This is some blog description about this site
Bronchitis is a health problem, which occurs to you when your health severity level is between pneumonia and the common cold. There is swelling or inflammation in your bronchial tubes when you have nagging cough or mucus. Bronchitis is of typically two types – acute and chronic. The first one is usual and is acknowledged as a chest cold. It lasts for a few weeks, but doesn’t hamper your daily life activities or cause serious health issues. On the other hand, the second one is a critical health problem and doesn’t go away quickly.
What do you mean by chronic bronchitis?
Chronic bronchitis is a lung health problem, which comes under the category of COPD (chronic obstructive pulmonary disease). In this health condition, you have a nagging cough, which continues for a more extended period and starts affecting your normal life. It can be a life-long illness if you do not treat in earlier stages.
How to get treated?
To treat your chronic bronchitis, you need to follow a set of steps that are as follows:
· Educate yourself
You can have a better chronic treatment when you have idea what causes you to have it and how to identify that you have chronic bronchitis. Polluted air, fumes, chemicals, dust, smoking/having second-hand smoking, allergies, weaker immune system, and family history of lung diseases can trigger your chances of suffering from this lung health problem.
Coughing, which lasts for more than 3 weeks, can be a sign of acute bronchitis. However, cough with mucus for a month or more than it is an apparent sign of having chronic bronchitis. Besides, you have symptoms like tightness in your chest, shortness in breathing, wheezing sound while breathing, and a feeling of tiredness even after a short walk.
· Consult a doctor and follow his advice for diagnosis and medications
Visit a doctor when you notice mucus in your cough and frequent tiredness or wheezing sound while breathing. The doctor converse with you to discuss what problems you are facing. He/she can do a test to know the lung function, examine the oxygen level in your blood, and ask for an X-ray of your chest, blood test, and cough test. The expert can prescribe chronic bronchitis medications that may include Advair Diskus and Anoro Ellipta. For the opening of the airways of your lungs, the physician may advise you to take an inhaler. Your chronic bronchitis treatment may consist of the use of mucus clearing device, oxygen therapy, and pulmonary rehab.
· Make lifestyle changes
Making changes in your lifestyle can also help you a lot. You must maintain a distance from smoking and smokers. Besides, you need to wash your hands frequently to stay away from infections. Never forget washing your hands if touch an object engulfed with dirt/dust. Wear a face mask if you have to go to the polluted area.
· Have a rehabilitation plan/therapy
Rehab therapy can be very effective for you if you have frequent shortness in breathing. The therapist will teach you ways how to manage this lung problem in a better way. You will learn how to breathe while doing workouts.
Chronic bronchitis is a lifelong lung health problem. It’s incurable. However, you can make your life better by having control over symptoms with proper treatment under an experienced doctor. You need to get in touch with your doctor before taking any step to treating this lung disease. Whether it is having lab tests, taking medicines, or following preventive tips, you must follow your doctor’s advice to manage your chronic bronchitis and to have a healthy life.
As regular readers will be aware, I was unlucky enough to be struck down with a chronic illness as severe and life-changing as chronic fatigue syndrome (ME/CFS) at the age of just 11 years old. But was it really just "bad luck" or did environmental factors - specifically toxic mold exposure - play a role? This is something I've been considering carefully lately and wish to share with you.
Being just a child at the time, I obviously wasn't concerned with the "hows and whys" of what caused this annoying and frustrating illness, or the ramifications it would ultimately have for me and my family. All I wanted was my family doctor to give me some medicine to cure whatever was wrong. He had of course done so many times before for the recurrent ear, nose and throat infections I'd experienced growing up (mold-related themselves perhaps?).
Surely I'd be back riding my BMX on the street and playing in the school football team with my friends in no time?
Ah, the innocent naivety of youth!
Now however, more knowledgeable and with somewhat(!) different priorities aged 37, I can look back at that time with the aim of identifying factors that contributed to the ill-health that has shaped my entire adolesence and adult life.
As is typical with ME/CFS my chronic illness began following a stubborn viral infection, hence it alternatively being dubbed 'post-viral fatigue syndrome'.
What has become clear looking back with hindsight though is that another disease-causing, toxic and insidious organism was very likely to have played a role by weakening my immune system, for example; of course... you've got it - I'm talking about mold!
Now, in case you're thinking "where's he plucked that idea from?" or maybe "this guy's just jumping on the latest bandwagon!"- let me fill you in on some key information I'm basing the possibility of chronic fatigue syndrome being a mold-related illness on:
- Firstly, I grew up prior to becoming sick in a house built in the 1930s on land that was previously marshland - not a good start. If you want to keep a house dry and free from damp and mold growth, the last place you'd want to build it is on wetlands where birds such as cranes and herons go to fish!
- It's also reasonably safe to say 1930s houses would not have been designed and built with damp-proofing as a priority and there certainly wouldn't have been any consideration of mold-proofing beyond cosmetic considerations. I'm pretty sure nobody laying the bricks was thinking about fungal spores and what they might do to a young boy's health when he breathed them in fifty years later...
- Where I grew up was cold and wet for half of the year and my bedroom window was metal-framed, and significantly, only single-glazed. Every morning I'd wake up and not be able to see outside for the condensation, not to mention there'd be water pooled on the window sill. The house was always kept clean by my parents but I do remember seeing black mold around the windows in those years before I became sick. Just imagine the number of toxic mold spores I was inhaling while I slept every night - enough to give you nightmares, right?
I could go on thinking of things about my childhood house, such as a leaking flat roof to part of the property, that in hindsight made it a breeding ground for mold - but truthfully it's starting to make me feel bad for my parents who obviously thought they were giving us the perfect family home!
Aside from that there remains something I've yet to tell you that has really forced me to reassess things based on my environmental surroundings as a child and consider mold as at least a significant contributor, if not direct cause, of me developing chronic fatigue syndrome ...
The fact is, I was not the only one to develop ME/CFS in this story. Not the only one in my family. Not the only one on our street. Not the only one in neighboring streets. And not the only one in our 'marshland neighborhood' as a whole!
Aside from myself, both my mother and sister were diagnosed with ME/CFS shortly after I was, so was our neighbor next door, so were at least half a dozen people who lived on adjoining streets and cul-de-sacs over the proceeding years (that we know of); undoudtedly there are many more we don't know of than we do.
Although some of us can pinpoint the "start" of our ME/CFS to viral infections, an equal number had no such infections. Based on what we know, the sole common denominator would appear to be our shared environment, rife with damp and mold growth. For me, it may have been fun to play in the remaining areas of marsh, adventuring and going home with newts and tadpoles as a kid, but I'm convinced although we lived in a nice neighborhood, the houses were plagued by mold - and as a result a large proportion of residents developed a mold-related illness - chronic fatigue syndrome...
As a postscript to this article I've intentionally not delved into the science of mold, including its toxic effects and role in allergies and sinusitis, nor have I looked at ways of dealing with mold in your home or treating symptoms of mold-related illnesses; the simple reason being I intend to cover these subjects in detail in a series of follow-up posts to the EiR Blog in the coming weeks and months.
However in the meantime, through looking into mold and mold-related illness I came across a great personal blog written by a former magazine editor, Catherine Fruechtenicht, about her and her family's battle against mold-related illness and also a fantastic company - Micro Balance Health Products - that produces a great range of science-based natural products to treat both the symptoms, and more importantly, the root causes of mold allergies, sinusitis and other mold-related illnesses; they also have products to help rid your home of mold and keep it gone - something myself, my family and our neighbors could have used all those years ago!
Both Catherine's blog - How to Clean for Mold - and the Micro Balance Health Products website provide a wealth of information on the science of mold, hints and tips for dealing with it, personal experiences, and so much more, so please check them both out to learn how mold may be affecting your health and that of your family - plus more importantly - what to do about it!
Anyone who suffers from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) will have been delighted to see news last week that reliable biomarkers for the disease had finally been found. Essentially, researchers at Columbia University have pinpointed changes in immune function that go a long way to proving once and for all that the illness once dismissively dubbed 'Yuppie Flu' is most certainly a physical, biological illness rather than a psychological disorder. Something any sufferer knows to be the case all too well from the moment it cruelly turns their lives upside down.
The key point that makes this study so important is that it was conducted on a large scale with 298 ME/CFS patients involved. In medical science this gives the findings a huge amount of credibility and reliability. It means the findings cannot be ignored and should lead to greater funding from both governments and non-governmental organisations (NGOs) and charities for future research and education. If confirmed, the findings will also give doctors, health care systems and medical insurance companies no scope to dodge their obligations to treat patients with respect and provide the care and support they need and deserve.
As a ME/CFS sufferer of 25 years, from the age of 11 years old, this seminal research is music to my ears. For me, I accept it may not lead to effective treatment for myself personally, but it should mean those who develop this horrible illness in the future can be diagnosed and treated early, offering a much brighter prognosis and chance of full recovery. This is an illness that destroys millions of lives worldwide, tears families apart and costs governments billions in lost tax revenues and disability payments (in cases where patients are lucky enough to be granted them).
When I was diagnosed in 1991 after all conventional tests came back negative or 'normal' following an in-patient stay in hospital - my parents and I were basically left on our own to cope with a complex illness we (and seemingly everyone else) knew nothing about. Being extremely stubborn by nature my response was to attempt to carry on living my life as normal but this only worked (sort of!) for around 3 years until total exhaustion began to kick in and my "healthy facade" became harder and harder to maintain.
My personal experience ties in exactly with what the Columbia researchers have discovered. The key findings of their study indicate that for roughly a 3 year initial period the immune system goes into overdrive with excessive secretion of signaling chemicals known as cytokines keeping it perpetually switched on - as it would normally be when fighting viral infection. High levels of the specific cytokines identified are associated with the symptoms familiar to everyone as those experienced when suffering from flu or similar viral illness. Not surprisingly, this is exactly what the early stages of ME/CFS feel like - exacerbated by physical exercise which raise the cytokine levels even further. Mirroring my experience exactly, the scientists found that after an initial period of around 3 to 4 years the immune systems of patients simply can't maintain what it is being asked to do and it becomes exhausted. The illness then enters a new phase and patients are themselves left completely exhausted and because the immune defences have been depleted, also open to opportunistic infections from pathogens such as bacteria and fungi/yeast (again, matching my experience and that of many others I've spoken to over the years).
Why Is This Study Such Good News?
If replicated, the findings of this study should point the way to the development of diagnostic lab tests to unequivocally confirm ME/CFS diagnosis quickly and easily - and shortly after to effective treatments.
Early Diagnosis: Key To Recovery?
The Columbia study actually found 51 immune markers specific to ME/CFS patients when compared to healthy controls. It should be possible to develop a simple blood test to screen for these (or a subset of the most important). With this in hand, diagnosis using this lab work and a patient's symptoms and medical history will become as easy as diagnosing other serious chronic diseases such as diabetes or heart disease.
Since it appears that there is this 3 year window to reverse the initial immune dysfunction seen in ME/CFS, early diagnosis becomes critical to successful treatment and a healthy future for patients. Being a sufferer of 25 years trust me when I say I am not being overly dramatic to say early diagnosis may therefore make the difference between a 'normal' life and one where an individual is robbed of career or employment, normal family life, social life, ability to enjoy sports and other hobbies...the list is literally endless.
Treatment Could Already Be At Hand
Perhaps the best news of all to come out of the Columbia study is that treatments may already be available. Drugs that suppress the excessive secretion of the cytokines that "switch the immune system on" - and in ME/CFS, keep it switched on - are already available. My personal feeling is that if I had been treated with these drugs following my diagnosis I would have felt 'well' and most likely not have spent a whole day in bed following any moderate physical exercise like a P.E. class at high school.
Perhaps more importantly even than feeling well again would be the long-term benefits. With the immune system carefully regulated with the aid of these drugs (i.e. kept within normal ranges) it seems logical to expect that it would not become exhausted and the illness would not progress and become much, much harder to treat and live with. Of course, this is just my own speculation but I do have a lot of insider knowledge! In the longer term I suspect drugs that are more specifically targeted will be developed and we will be able to confidently start talking about ME/CFS being a curable disease in the large majority of cases.
As things stand today it is still a lottery as to whether patients get an accurate diagnosis and if they do it can take years of going from doctor to doctor being told conflicting information. If you're unlucky as an ME/CFS patient you are simply dismissed as "crazy" even in 2015. Equally, treatment and prognosis is just as much of a lottery. If you get an early diagnosis and the right doctor caring for you then you might stand a good chance of recovery, for most of us things have turned out to be far more bleak.
I sincerely believe this research is the turning point and I am looking forward to a future where ME/CFS patients no longer have to "suffer in silence" but instead are diagnosed and subsequently treated - in every sense of the word - in the same way as patients suffering from other serious physical diseases.
As most people are looking forward to Christmas and the Holiday period with the promise of plenty of festive cheer with family and friends, the mere thought of it can send those of us affected by chronic illness into a panic. As a child and teenager suffering from chronic fatigue syndrome (ME/CFS) I still throughly enjoyed Christmas and New year's celebrations, after all what kid doesn't love opening gifts and gobbling down festive feasts? As an adult things are rather different and dealing with the fatigue, pain and other symptoms of chronic illness during the Holidays can cause a lot of stress and really get you down...if you let it.
This year however, I am determined to find as many reasons as possible to be cheerful and to enjoy the next few weeks to the fullest!
I know everyone has different health concerns and different circumstances but I hope you can all apply at least one or two of my reasons to be cheerful to your own lives and have a genuinely enjoyable festive season.
So, let's get down to it and look at ways in which we can make our lives easier during the Holidays and increase our enjoyment levels!
1. Drop Everything That's Not Essential
I'm sure I'm not the only one who has a tendancy to take on more than I can handle and attempt to do too many things at once. So let's start by dropping everything other than those things we absolutely need to do. In my case I work from home running this website and in March next year have my first gig as a lecturer at a nutritional medicine college - so I have a ton of research to do and slides to prepare. But do I really need to work over the Holidays? Not really. So other than writing another blog post or two for you guys to read as you are (I hope) relaxing over the next couple of weeks, I've decided all the technical website work and my lecture preparation can wait until 2015. Ahhh, I can feel a weight lifting from my shoulders already!
Obviously I appreciate we all have different commitments, maybe with work or keeping the kids entertained, but try to stand back for a moment and take an objective look at things and I am certain you will find things on your to-do lists that you really don't need to do. If it's not essential then scrub it off that list right now! Even the things that do need to be done - think about whether it's you that really needs to be doing them. You can always delegate tasks such as gift shopping and writing greetings cards to partners, family or good friends. Better yet, get the kids to take care of things where possible! With less on your plate, so to speak (I'll get to actual plates shortly!), you may already be feeling less stressed out and more cheerful!
2. Accept Your Limitations
On a personal note, I have been chronically sick for 24 years now. Being somewhat stubborn (an understatement if ever there was one!) it has taken me this long to finally accept that due to the fatigue, aches and pains, cognitive dysfunction and all of the other symptoms that ME/CFS brings with it - I simply can't do everything that I'd like to or that my healthy friends and family can. On the face of it this might not sound like a reason to be cheerful but what I'm talking about here is true acceptance, the kind that all those self-help books are always banging on about. I think I finally get it! If we can genuinely accept what we aren't able to do (through no fault of our own), then we can really focus on enjoying what we are able to do! Maybe you can't be the one to host the big family gathering and cook the Christmas dinner, who cares? Let someone else do all the hard work and you just sit back and enjoy! So what if you don't have the energy to write greetings cards to every single person you know, they'll understand, you're chronically ill after all and they know you're thinking of them!
I have had somewhat of an epiphany during a difficult 2014 with regards to the true meaning of 'acceptance' when it comes to coping with chronic illness. I plan to write a lot more about this in 2015 so I will leave this subject here for now. What I will say is once you're able to let go of the expectations you had for your life when you were 100% fit and healthy and focus on all the great things you can still do - things that may even bring more fulfillment and happiness into your life than your original plans - than that is undoubtedly a reason to be cheerful!
3. Enjoy Time With Friends And Family
When we live with chronic illness we often find ourselves isolated and feel cut off from social circles, particularly if unable to work or be involved with old hobbies. We may not see close family as much as we'd like either. We humans are social animals so it's only natural that this situation does nothing for our sense of well-being. The Holidays give us a great opportunity to spend quality time with our loved ones and catch up on what everyone has been doing over the past year. The great thing about the Holidays for me is that everyone is generally getting together anyway so I don't need to expend what precious energy I have and stress myself out planning to see individual family members and friends here and there. So try to look on this festive season as a time to really enjoy the camaraderie of just being around people and have a laugh and a joke. Sure, we might not be the last one at a party, staying up to the early hours but we can certainly make the most of the time we are able to spend in the company of our loved ones!
4. Give And Receive Gifts With Joy And Gratitude
This one speaks for itself really, we all enjoy receiving gifts don't we? Equally, there's a lot of pleasure to be had from giving presents. I am very lucky this year as I have become an uncle for the first time with my younger sister (chronically ill herself) giving birth to my beautiful, healthy niece Isabella in August. She's already quite the character and very precocious. It will be amazing for me just to see her cheeky little smile as she opens the gifts my fiancée and I have bought for her. The same goes for all family or friends though. Isn't it great just to see peoples' faces light up when they open that special gift you got for them, whether it be your children, your partner, parents, grandparents or best friend? The gift of giving is certainly a reason to be cheerful for me and chronic illness can't get in the way of this one in any way, shape or form!
5. Enjoy Food & Drink (Within Reason)
Although many of us (myself included) have dietary restrictions that are doctor-prescribed in the case of diabetes or hypertension (for example) or self-prescribed in the case of foods and drinks that just don't seem to agree with us. It's very easy to become obsessive with diets however and depriving ourselves entirely of things that give us enjoyment can actually be more detrimental to our overall health and well-being than allowing ourselves a treat now and then. As someone who has studied nutrition at degree level I am not saying we should go on a binge but if someone offers us a tasty indulgence, let's allow our taste buds a treat for once (I told you plates would come into it again!). When you're chronically ill you often have many of the things you enjoy in life taken away from you so let's give ourselves a break and another reason to be cheerful during the Holidays!
Finally, if all else fails and you're worn out and in pain - why not get that old Christmas hits CD out or put on that DVD of your favourite festive movie. Home Alone cheers me up every time, thanks Macaulay...
Happy Holidays everyone and best of health to you all in the New Year!
Visible Signs of Invisible Illnesses Featured
Those of us affected by what are frequently referred to as 'Invisible Illnesses' - chronic fatigue syndrome (ME/CFS), fibromyalgia (FMS), multiple chemical sensitivity (MCS) etc - are constantly frustrated by the fact that we feel lousy, yet appear perfectly healthy to the casual observer i.e. our friends and relatives.
Perhaps even more frustrating is that to the eye of the conventionally-trained doctor we also show no signs of illness, leading many to assume it's all in our heads and to send us off to the shrink. Which is of course unproductive, and often counter-productive, given that these illnesses may often be invisible, yet are nevertheless as real and legitimate as physical conditions as the likes of diabetes and arthritis. The medical literature is now full of decades worth of research documenting immunological, endocrine, and neurological abnormalities that overwhelmingly makes this case for us.
These illnesses may be invisible to the Average Joe on the street and even to most doctors but the signs are there if people knew what they were looking for. Some of these telltale signs include:
Pale or 'Washed Out' Complextion (The Corpse)
We invisible illness sufferers invariably look a bit closer to your average corpse than most people, especially on a particularly bad day or after some form of exertion. The reasons for this are many and varied but include poor oxygenation of the blood and difficulties getting sufficient blood to the head and face. Problems with the hypothalamus and hormonal pathways that regulate blood pressure account for some of this and ME/CFS patients have actually been shown to have less blood than healthy individuals. No wonder we look pale!
Dark Circles Under the Eyes (The Brawler)
If I spot someone who constantly has what look like minor "black eyes" then I know they are likely to be suffering from an invisible illness. The reasons for the circles are unclear to me from a scientific perspective, but common anecdotal reports suggest they are the result of liver toxicity or allergies (or both), which seems to fit with my own profile. My mother and sister also suffer from invisible illnesses and also sport black eyes so that when we are together we look like we have had one almighty family bust up!
Dizziness (The Drunk)
Whether it be someone with ME/CFS stumbling around just after standing up due to lack of blood flow to the brain (POTS, NMH, Orthostatic Intolerance) or an MCS sufferer looking unsteady on their feet after suffering a bad reaction to a chemical trigger - we invisible illness sufferers can often look like we've had one too many alcoholic beverages!
Lack of a Smile (The Grump)
This one is a bit left field but I have an unusually strong memory of a fleeting incident in high school when I was aged 14 (after having suffered from ME/CFS for 2-3 years). As I was walking down a corridor on a bright summer's afternoon a girl I knew quite well said something along the lines of "cheer up" or "give me a smile". At the time I was exhausted, was aching all over, and had a touch of nausea, so I politely attempted a smile but was angrily thinking "you try feeling as crappy as this and smiling!" Of course, had I been healthy I no doubt would have been smiling on such a nice day - they are rare here in Northern England so would usually bring a smile even to Mr Grumpy's face!
Forgetting Words or Names (The Amnesiac)
I don't know about the rest of you invisible illness sufferers but something I find infuriating about these illnesses is my frequent inability to remember even the simplest of words or the name of someone to whom I was introduced literally a minute earlier. I can be mid-sentence when talking to someone a draw a complete blank when searching my brain for a word that is a common part of my vocabulary. To the other person I must appear like a humanoid robot that has crashed and needs rebooting! I have yet to forget the word "the"...but I've been close.
Of course taken alone there could be any number of reasons why someone would exhibit these five signs. If someone displays them all chronically without other explanation though they may well be suffering from an "invisible" illness. So keep an eye out for us. We are the walking dead who have reached the depressed stage of drunkeness...and can't remember the bar fight we just had!
Now enough of my ramblings...as always, I would love to leave yours. Please post your thoughts and experiences below...
The following is the Preface and Introduction to an extensive 26 page article on Lyme disease and tick-borne infections (TBIs) by Kate Bloor (followed by a link to the full article in PDF format).
Kate argues that a coordinated effort is required, from government policy at the top down to local community efforts at the bottom, to prevent the spread of TBIs and the incidence of Lyme disease, which as many will know is extremely difficult to treat once it becomes chronic. It is focused on the UK but the information is relevent to those of you in the US, Canada, and elsewhere.
If you or any of your loved ones suffers from Lyme disease, TBIs, or multi-system illnesses such as chronic fatigue syndrome (often misdiagnosed Lyme disease), I urge you to read the full article and take action to implement its recommendations.
POLICY ON LYME DISEASE (AND TICK-BORNE INFECTIONS) IN ENGLAND AND THE UK - A ‘COMMUNITY’ AGENDA
Lyme disease is a spirochaetal infection carried by hard ticks which normally feed on the blood of wild animals, but also feed on domestic/farmed animals (e.g sheep and dogs). If a tick carries infection, and takes a blood meal from a human, large numbers of the Borrelia spirochaetes can be transferred into their skin and blood. This then causes an acute illness, but if left untreated or not treated correctly, it can become chronic. This can cause a multi-systemic (eg neurological, immunological, rheumatological, hormonal) illness. There are a number of other infections (eg Babesia and Ehrlichia) that can also be transferred by this method to its ‘host’, sometimes in conjunction with Borrelia infection, and this may cause more complex forms of illness.
Methods of diagnosis and treatment for tick-borne infectious related illness, are controversial. There are large areas of medical uncertainty, contradictory views and evidence, as well as ongoing new knowledge about the etiology of disease, and the biology of the infections. Patient’s experiences of health services in the UK have been a matter of concern, since the NHS has frequently failed to deal with their illness. Representations from patients and patients groups, via democratic and other processes, have not resulted in full review or consideration of these issues, on the part of the state or its agencies. Above all, there appears to be a lack of any strategic thinking with regard to dealing with to these complex illnesses.
The aim of this paper is to raise issues about policy and practice, on the prevention and treatment of tick-borne infection (TBIs), in the UK. Its purpose is to enable future discussion about key issues and is aimed at broad professional audience. While it is not an academic paper, it does use some academic concepts and rationale. It is a follow on from a background article on the medical and political issues, surrounding Lyme disease and other tick-borne illnesses (footnote ). It is a position paper that questions the lack of organisational process in dealing with TBIs, a view that is different from that held by the statutory services and government.
This new paper is orientated towards two basic questions, ‘What has gone wrong?’, and ‘How it could be fixed’. It is concerned with policy (and practice) solutions to the public health ‘protection’ and health education issues. It also attempts to present an approach to tackling the consequences, when prevention of illness, or diagnosis procedures, fail. It is also concerned with the potential role of local action and the involvement of communities, which is considered essential in an effective delivery of health and tick protection information.
The previous government (before the new coalition of May 2010), did not have a clear strategic (or co-ordinated approach) to tackling the prevention of disease from ticks. It had no well-defined, stated aims or operational tasks and projects, or policy responses, to ticks and tick-borne infection. Agencies and organisations, within the state, such as strategic planning bodies for public health, (including the Department of Health, Health Protection Agency and the public health specialist structures), have not yet enabled a planned, forward looking, and proactive approach to tackling the growing threat to communities and population from Tick Borne Infection's (TBIs).
The approach of these agencies is ‘reactive’ rather than ‘proactive‘, with the underlying assumption that no changes are needed to deal with TBIs, and the new medical challenge of more complex tick-borne infection-related illnesses. Another assumption that has become deeply embedded into policy, and practice (and possibly also research), is that ’chronic Lyme’ is a mild self-limiting illness. It is also assumed that that is no specific treatment, other than that given for symptomatic relief or those therapies aimed at people with M.E (Myalgic Encephalopathy), irrespective of length of delay in treatment, types of complications/symptoms, and response to standard treatment following initial diagnosis.
The government’s agencies are ‘transfixed’ by the idea that tackling Lyme disease is primarily about dealing with ‘acute’ illness. These structures consider the treatment of Lyme infection and other tick-borne infections, primarily in the context of general practice or ‘first line care‘. It is assumed that general practice advice provided on an individual basis to people who have been bitten and become ill, is the primary locus for diagnosis. Continuing care for those with ongoing illness, are also primarily cared for by GPs that do not often know how to advise or treat them.
Since trends in tick related chronic illness (defined loosely here, as any long-term illness initiated by a TBI) are not being monitored, researched or measured in any way. No detailed knowledge of these types of cases, is available. What the state does not ‘see’ or ’measure’ the state cannot ‘fix’ and takes no responsibility to do so. Referral of such cases, to M.E services (even when that is not considered by M.E doctors to be appropriate or useful) carries on. Patients with chronic forms of illness from ticks ’ disappear’ into ‘generic’ categories like M.E or various different ‘diagnostic categories’, including those whose illness has been aggravated by delays in treatment and/or misdiagnosis.
This paper looks at some of the potential ways in which the state and its agencies, could ‘work together’ with communities to tackle the risks, and effects, of tick-borne illness at ground level, as well as in ‘grand’ strategic policy. It is about the kind of approaches that could help government avoid unnecessary tests, or other medical and social expenses, by preventing misdiagnosis or late treatment, and therefore, chronic illness from TBIs. It presents a model that could be used as a starting point for discussion, to build a better strategic plan to protect the public from ticks, and TBIs, and thereby prevent illness.
While this paper focuses on England (as opposed to Scotland, Wales or Northern Ireland) the main points are also relevant to the rest of the UK. Many of the points made in this paper are relevant for areas where understanding and practice, is probably better.
The views presented in this paper are the author’s own, and do not reflect those of any organisations whose work is mentioned. The paper is based on an understanding of health and illness gained from working in medical (public health) research, undertaking academic research and study in relevant areas, and working in evidence-based policy-making in government. The internet has been chosen as the best means of disseminating this position paper because it makes it more accessible.
Since there has been little or no policy-orientated analysis or research, related to tick-borne infections in the UK published to date, this is an ‘uncharted’ area of policy-making and service delivery. More work of this kind urgently needs to be undertaken for the UK. It is hoped this article will enable more critical analysis and discussion to take place within UK professional groups and agencies, as well as organisations that have a vested interest (e.g. tourism, environmental, outdoor activities, landowners and land management, etc.).
There are many important questions to be asked, and debates that need to take place, about how to best organise and monitor the treatment of people with TBIs in the UK. These debates need to be more open, and therefore more accountable to patients and their carers, MPs and doctors. This is a controversial subject, has various dimensions, and some areas of uncertainty. If this article helps to generate a debate that is more open and deeper, to tackle some of this uncertainty, in a humane and problem-solving manner, it will have been a success.
PREFACE Pge 2
INTRODUCTION Pgs 2-3
PART ONE: AN ACTION MODEL FOR STRATEGIC CHANGE ON TICK-BORNE INFECTIONS (TBI’S) Pgs 3-6
PART TWO: RECENT GOVERNMENT POLICY APPROACHS ON TBI’S Pgs 6-12
PART THREE: A STRATEGIC APPROACH TO DEALING WITH TBI’S – A COMMUNITY AGENDA
A. WHY A COMMUNITY APPROACH IS NECESSARY Pgs 12-15
B. EVIDENCE BASED APPROACHES TO LOCAL ACTION ON TICK PROTECTION AND LYME DISEASE PREVENTION Pgs 15-18
C. COMMUNITY ACTION AT A LOCAL LEVEL - GOOD PRACTICE Pgs 18-20
PART FOUR: COMBINING STRATEGIC POLICY-MAKING AND LOCAL INVOLVEMENT Pgs 20-26
About the Author
Kate Bloor is a researcher and academic living in the south-east in the UK. She has a past career spanning health research, lecturing in research methods, and research management in the government sector. She has had many years working with and in groups, in a voluntary capacity, on a number of issues within various community groups and organisations, including trade unions and women's groups. Her research interests lie in the interface between society and scientific/ biological knowledge, where the influence of each on the other is interconnected and subject to change. She has an orientation towards critical multidiscipliniary research spanning philosopy, sociology, policy studies, political studies and science/ statistics. She is also an occasional poet and aspires one day, to make a film.
For those who are not regular visitors to The Environmental Illness Resource, I am a 31 year old male from the UK and was diagnosed with Chronic Fatigue Syndrome (ME/CFS) in March 1991 around the time of my 12th birthday.
Recently my parents moved house and my mum dropped off a box full of old photos of me from my childhood. Looking through them I was struck by how happy I looked as a child. This was clearly the purest type of happiness borne out of freedom from worry and a true zest for life and the excitement of discovering new things every day. Naturally, it's easy and 'normal' to lose these things as we get older, but even more so when a chronic and misunderstood illness such as ME/CFS deprives you of many of the things that most people take for granted.
As I found photos of myself as a young teenager, following my diagnosis of ME/CFS, it was clear what a devastating effect becoming ill had had. I look tired and drained but also as if someone had stolen the magic that life had previously had to offer. At the age of 12 I was being asked to face a challenge so great that most people would find it hard to comprehend, never mind empathise with. It wasn't so much the physical symptoms of my illness I found hard to deal with, it was the loss of freedom to engage in all the sports I loved, spend time with my friends...and believe it or not, attend school every day and study. Despite what a particularly old school psychiatrist with an attitude problem and an apparent lack of a caring bone in his body would tell my parents and I, I loved school for everything it had to offer, the learning, the socialising, the extracurricular activities, the lot. So the worst thing about developing ME/CFS for me was not the symptoms themselves, but the frustration of being strapped into a metaphorical straight jacket. This has remained the case to this day despite having to cope with some pretty horrendous symptoms.
I also found photos of myself after I had developed multiple chemical sensitivity (MCS) in my early twenties and was forced to wear a carbon filter face mask to avoid exposures and the exacerbation of my symptoms. This obviously added a huge amount of extra restriction to my life and I had the sense that the world was closing in on me. As time went by I was losing more and more of my freedoms due to my ill health. It felt like eventually I would be completely enveloped and unable to move at all, as if trapped alive in a coffin.
I digress. It was not my intention to write an autobiography today, I want to let the photos do the talking, so I will leave it there. I will just add that I have now developed a sense of empowerment and self-confidence that I never knew existed within me and I am slowly pushing back against the world and expanding my horizons once again. I am still frustrated by limitations my ill health places on me but I have overcome the MCS and am confident I will continue to get better. Hope and the tenacity to never give up are wonderful things and I pray that all of you on a similar journey to mine can find them.
My parents tell me I cried constantly as a baby...until I was mobile...at which point I didn't stop smiling...
...or pulling cheeky faces!
"Don't stop me dad!"
Happy with friends
A common site after ME/CFS diagnosis. No more boundless energy...one day of activity followed by one spent sleeping it off.
Not happy to be restricted to bed by an invisible force!
A few years later and still not looking happy at having to stay home...despite the company of my labrador puppy 'Toby' whom I loved dearly.
A typical scene following the development of multiple chemical sensitivity. I had to wear a mask when around family...
When around friends...
And when outside, even in the fresh air of the countryside.
Reward for never giving up...my graduation ceremony at the University of Greenwich, London. I may be pondering the future...or I might just like silly poses for the camera!
Enjoying a holiday in Turkey after completing my degree work.
I feel like this post has been a little self-indulgent but I do hope you got something out of it. My aim was to show those who dismiss ME/CFS and MCS or do not appreciate their seriousness, just how devastating they can be and how they completely change a person's life. I slipped the two most recent photos in at the end to show that despite the devastation these illnesses cause, if you have hope and refuse to give up on yourself (or loved one), life can once again be a positive experience complete with enjoyment and personal achievement.
To a happy and healthy future!
In Chronic Fatigue Syndrome there are many theories as to the cause. Some say it is the effects of heavy metal and chemical toxicity. Some say it is chronic infections, while others say it is the side-effects from vaccines and the use of suppressive medicines such as acetaminophen, aspirin, and ibuprofen, still others say it is dysregulated hormones or the effects of emotional trauma.
It this author’s opinion everyone is correct in the same way as the proverbial three blind men describing an elephant from the head, tail, and the side are correct in each one’s description but only from his unique vantage point. However, in Chronic Fatigue Syndrome there is one common overriding finding…low body temperature!
This article deals primarily with the very predictable problems seen in low body temperature and the profound importance of restoring and maintaining normal core body temperature. This is true not just in Chronic Fatigue Syndrome, but in every degenerative disease of our day.
Your core body temperature is the temperature taken under the tongue. When human physiology books refer to the “normal” core body temperature it is presented as a range sometimes listed between 97.0-99.0°F . Understand that the “Normal Range” for temperature or even the normal ranges in blood tests are based upon the average person of our day. That is why “normal” changes periodically, because as our average population continues to get sicker the normal ranges must be adjusted. So in this discussion I am speaking about what is an optimal core body temperature – 98.6-99.6°F.
Much emphasis in conventional medicine is usually placed upon feverish conditions; however, a low body temperature can be a much more sinister condition. Where a fever can be viewed as an active developmental and corrective process of the healthy body, a low body temperature can never be viewed as a normal or healthy condition, nor is it a mechanism for a learning or developmental process in the body.
A low body temperature creates a happy home for viruses and chronic infections, and is a sign of degeneration and gradual cellular death. The problem with a low core temperature is that no effective immune response can be mounted therefore no fever is generated and infections go undetected. The sickest person is one who gets the same infections but never miss a day of work because there is no response by their immunes system, so they have a false sense of wellness as healthier individuals go through healthy fevers and immune responses that may cause them to miss work.
Low body temperature is the plague of the 21st century. People with low body temperature have a weak reaction to even the most ideal medicines and therapies.
As the body’s core temperature decreases all cellular energy also decreases thereby leading to profound and chronic fatigue that is not relieved by sleep.
The effects of low temperature:
The cooperative and collective intelligence of the human organism is short-circuited as the body temperature cools. As a result, all cellular functions decrease. There is a decrease in the production of all hormones, neurotransmitters, and other body chemicals necessary for healthy regulation of energy.
In this mild hypothermia condition there is an increased susceptibility to infectious disease as temperature drops the acidity of the body increases and the normally predominantly negative polarity of the cells become more positively charged.
The colder the body becomes the more prone to depression and other psychological abnormalities and all degenerative illnesses of the body, mind and spirit.
Until the causes of the lowered temperature are addressed and corrected, the best that can be hoped for is only temporary or mild improvement of symptoms and a gradual but steady overall decline in health.
Viruses prefer and promote a cold environment and replicate at a much more rapid rate when the body is cold. Viruses are killed and further replication is impeded by maintaining a warm body. Some bacteria such as Lyme spirochetes also prefer and promote a cold environment and can remain in a chronic state as long as their cold environment is maintained. Therefore, in the interest of the prevention and treatment of any viral, bacterial, or chronic illness, this topic must be understood.
The ultimate body coldness is seen in death. When observing a corpse many clinical gems can be gleaned and correlated to degenerative states of human suffering. In death, the blood and lymph fluid of the body solidify and the body becomes stiff and cold. In the same way many chronic cold illnesses such as, fibromyalgia, chronic fatigue, cancer, Lyme disease, Multiple Sclerosis, diabetes, and heart disease, we see that the body becomes progressively colder. As the body cools, the electrical oscillations of the fluids in the body slow down and there is a shift in the body’s polarity which promotes infectious microbes and cancer.
We can see the same principle of what happens in the body by observing the same dynamics in a water molecule. When the electrical oscillations of a water molecule slows down it becomes a solid, ice, as we speed up a water molecule’s electrical oscillations it liquefies and ultimately becomes a vapor.
The colder a body becomes, the slower the electrical oscillatory rate and therefore the thicker, more viscous, or syrupy the body fluids become. The more viscous the fluids become the more difficult it is for the body to push the fluids through the body. The lymph fluids that are normally supposed to bathe the outsides of all of your cells become progressively stagnant as it is too thick to move efficiently.
Now, consider the fact that just like your skin is constantly dying and flaking off and being replaced, so it is that every cell in your body is in a constant state of dying and being replaced. Only now the cold, syrupy lymph fluid cannot wash the dead cellular debris away. As a result the body becomes a toxic waste dump!
Muscles normally have a high demand for energy. Through contraction and relaxation muscles assist in eliminating their own cellular waste products. In a cold body however, the liquidity of the fluids inside of the muscles is gone, and the muscles cannot move the toxins and cellular debris.
The deeper you go into belly or center of the muscle, the colder and more difficult it is to move the toxins. Without normal viscosity of the body fluids, muscular contraction and relaxation grinds to a halt, like an engine with no lubricating oil. The belly of the muscle develops a knot that can be felt when massaging the muscle. This is the knotted, painful, muscle condition commonly known as “trigger points” of Fibromyalgia Syndrome, which is being diagnosed in millions of people every year.
If the low body temperature is allowed to persist and no therapies are applied, even in a palliative manner as in massages to move toxins manually out of the belly of the muscle, the condition follows that of the water molecule. The belly of the muscle, due to the increasing coldness and decreased muscular activity progressively over time reaches the point of zero electrical oscillations at which time the tissue solidifies in a calcified stone in the belly of the muscle.
Interesting research that supports this concept has been performed by Dr. Carolyn McMakin, D.C. using the electro-therapy called microcurrent. The microcurrent is applied through direct contact on these trigger points via vinyl/graphite gloves connected to the microcurrent machine.
The trigger points virtually vanish under the gentle touch of the glove when applying the correct electrical frequency. What may be happening here is that the stimulation of the muscle through microcurrent is externally increasing the electrical oscillatory rate of the thickened fluids in the muscle resulting in temporarily restoring the normal liquidity of the fluids allowing the muscles to once again contract and pump out the toxic accumulation.
The results are somewhat temporary due to the fact that the underlying condition that created it in our scenario, the overall low body temperature, remains unchanged. However, used in combination with various other corrective measures, this microcurrent therapy can speed healing in many cases. Relief of Fibromyalgia Through Microcurrent Therapy by John W. Addington ImmuneSupport.com 7-11-2001
Organ Circuits and low temperature
The body is set up with dedicated electrical circuits all of which are interdependent and interconnected. A circuit in the body has a specific organ, gland, teeth, muscle, and nerves. If anything goes wrong in one of these organ circuits the circuit energy goes down approximately 60% of normal.
The laws of thermodynamics state if we decrease energy we decrease temperature. Due to the interconnectedness of all the circuits, one circuit in the body cannot go down without ultimately affecting the whole.
Therefore, if the muscle is seizing up and becoming progressively rigid and solidified, what do you suppose the organ that is also on that same electrical circuit is doing? It is likely that to some degree it is also progressively seizing up and solidifying.
In the 50,000 miles of blood vessels, the cold thick blood is more difficult to flow through the veins and arteries. Arteriosclerosis, the progressive hardening of the arteries, and the clogging of the blood vessels is manifesting the exact same problem that is being experienced by every tissue in the too cold body.
Edema in the extremities is seen as the muscular walls of the blood vessels seize up and can no longer maintain tone and the fluids leaks out of the pores in the vessels.
I look at many older patients, and some not so old, who are experiencing all the signs and symptoms of death in the extremities. They are dying in their extremities first, from the feet and hands up to legs to the torso. To touch their feet is just like touching an icy, stiff, dead corpse. The foot is deathly whitish blue and etched in blue/black blood vessels from devitalized, stagnant blood.
The overcooling of peripheral blood returning from cold legs and feet causes depression of the temperature in the vital organs with slowing of metabolic processes, particularly in the brain and medullary centers. Cotran R.S., Kumar V., Robbins S.L., Robbin’s Pathological Basis of Disease 4th ed. 1989 pp501. Death occurs when a vital organ reaches the point of being too cold.
Your physician can name your disease, he can call it cancer, he can draw your blood and show you everything that is wrong with it, but he is simply describing the process I have just outlined. When the core temperature of the body is cold every organ, gland, and tissue is affected and becomes hypo-functional or may even become hyper, as in the case of hyperthyroidism, in a last ditch effort to compensate for the hypothermic condition of the body.
Hypo-function in the body means that there are fewer hormones, and less of every chemical involved with normal body and brain function. Even the psyche is affected leading to virtually any type of psychological problem, especially depression. How many people are told that they have psychological depression from a deficiency of a certain brain chemical?
Can you see that of course they are deficient in “happy” brain chemicals possibly due to the overcooling of the body?
It might be said that you are dying in direct proportion to the coldness of your body. Follow this logic: Cells degenerate and die in direct proportion to the depletion of oxygen. Blood that is overcooled from a cold core temperature is too thick to efficiently carry oxygen and the lung vital capacity is reduced leading to shallow breathing.
This means that the oxygen to carbon dioxide exchange rate in the lungs is minimal. Now combine the degenerative effects of the oxygen deprivation and the cold temperature and the fact that all of this and the overgrowth of microbes promote an acidic environment and you have greatly accelerated cellular degeneration and the onset of life-threatening disease.
There is an optimum body temperature is which all chemical reactions in the human body need in order to maintain health...98.6° F. I can honestly say that I rarely see a new patient come into my clinic with a normal body temperature. One 66 year old woman came in as a new patient with a temperature of 94.6! She was in dire straits for certain. She could not feel her feet and to touch her legs was like touching the legs of a corpse, the legs even looked dead and grey, streaked with blue/black veins of stagnant devitalized blood.
In classic hypothermia, as seen in people stranded in blizzards, it is well known that the circulation of blood in the arms and legs is reduced dramatically, almost to zero, in order to provide protection and warmth to the vital organs. These people will also cease to feel cold and will experience numbness, loss of coordination, mental confusion, and heart rhythm problems. It sounds like I am describing many elderly people, and some cancer sufferers doesn’t it?
One way to treat weather related hypothermia is to give the person warm sugar drinks. Sugar is a cheap, fast burning fuel for your body and therefore generates a lot of heat in the process. This may be why so many people suffering from lifestyle induced cold core temperature are plagued with sugar cravings.
Many of them consume copious amounts of sugar in the form of soda pops, chocolate, pastries, and various candies. It may be a craving that is driven by the body’s desire to generate fast heat to keep the body functioning. Sugar cravings should diminish as the core body temperature problems are resolved.
Keep in mind that the body has been too cold possibly since birth, due to multi-generational use of suppressive medicines, vaccines, fever-reducers, heavy metal and chemical toxins, and from the consumption of energetically dead food.
The retraining and resetting of the body’s thermostat is just the beginning of healing the body of chronic illnesses. The normal body temperature must be held steady possibly for a year or more in some cases before the body can undo the damage of a lifetime of coldness.
Understanding your Temperature
Everyone can afford a simple thermometer. Track your temperature when you first awaken in the morning, before even getting out of bed. This reflects your core body temperature, when it is not being influenced by what you just ate, drank, or your activity level. Many of you will likely be surprised to see just how cold you already are. This is the result of generations of suppressive therapies and an imbalanced life. You must save yourself.
Many doctors will undoubtedly say that you need to take a thyroid medication to bring up the body temperature; however this is the same mentality of taking a Tylenol for a headache. If you don’t believe me then ask anyone on the prescription thyroid medicines- what happens when they go off of the medication? The body returns immediately to the previous cold, hypo-functional condition.
One should definitely support the normal functioning of the thyroid, by detoxification, organic iodine, adrenal glandular supplements, and nutritional support, but see the coldness for what it really is, a sign of multi-organ system breakdown, and longstanding or even generational imbalance. Besides, it is the hypothalamus that regulates your core body temperature, along with regulating your degree of motivation and sex drive. The hypothalamus is actually “upstream” from your thyroid, helping the pituitary regulate the thyroid.
The healthy body has daily temperature fluctuations (diurnal) with the coolest temperature upon awakening in the morning hours of 6-8 a.m. and the warmest being in the evening between 8-10 p.m. Tracking of the difference between morning and evening temperature should reveal, in a healthy person, a difference of at least 0.9° F (0.5° C).
People with a low body temperature and an overall degenerative condition will find that this temperature variation is minimal. Another unusual finding of dysregulated body temperature is that the evening is often colder than the morning reading.
The body’s best chance at long-term healing increases in direct proportion to the restoration of normal body temperature. The effect of even the most perfectly selected medicines is limited by the available energy in the body to correctly utilize those medicines.
You and your healthcare team must address your body from every direction and with every balancing tool available. You can never truly overcome this condition with pills. Therapies must engage and reactivate and stimulate the rhythmical, metabolic, and nerve/sense aspects of your body, addressing the body, mind, and spirit.
Other supporting therapies designed for restoring the rhythms of the body must be applied. These therapies might include color and sound therapy, hot and cold contrast therapy, life-activity planning, breathing and voice therapy, rhythmical massage therapy, curative movement therapies, and indeed every other treatment from your doctor will address in some way the rhythmical aspects of your body.
Low body temperature must be addressed to bring the body back to balance. The temperature must be elevated to end the dying process of the body and to help the body eliminate the cellular debris or the “sludge” in the body.
· Temperature monitoring and graphing (upon awakening before getting out of bed, and between 8-10 pm after a 30 minute resting period) · CRT (Computerized Regulation Thermography) for identifying problem areas and tracking of progress. · Core Warmth™ herbal formula (Hansa Healing Products, Inc.) to open all meridians and restore proper fluid dynamics and warmth regulation in the body. · Sleep on an Amethyst BioMat® from Richway, Inc., provides detoxification and restoration of fluid viscosity and core body warmth through variable infrared heat and negatively-charged ions from amethyst crystals. · Infrared Sauna Therapy…detoxifies body and restores circulation of blood and lymph (High Tech Health, Inc.). · Natural-Bristle, Dry skin brushing morning and evening (Entire body) · Detoxification Bath Therapy…4 cups Epson Salt 64oz. Hydrogen Peroxide 3% in warm bathtub. Soak for 20 minutes one bath per night before bedtime. · Mustard foot bath (Hansa Healing Products, Inc.)… at least once per day, preferably in the morning or early afternoon. · Solum Aesculus Oil (Uriel Pharmacy, Inc. )… This oil and essence is great for restoring the warmth organization of the body. They also are beneficial for chemical sensitivities, and those suffering from weather-change barometric-related sensitivities. The oil and essence are low odor products made by Uriel Pharmacy, Inc. This oil can be added to a bath for all over body application or be used as massage oil. May be applied as needed. · Chiropractic spinal, pelvic, and cranial alignments combined with specific homeopathic, nutritional, glandular, and myofascial support using Bio-Resonance Scanning™, or other body circuit balancing technique…as dictated by your healthcare professional. · Vibration Station®… work up to 20 minutes per day. (Or other movement therapies) · Therapeutic Massage using various homeopathic and herbal ointments (Uriel Pharmacy, Inc.) and therapeutic essential oils (Young Living Essential Oils company) · Dietary Changes… call Dr. Jernigan for pamphlet on cooling foods and warming foods for restoring optimum body temperature. · Learn to control the mind and emotions, picking higher vibrational thoughts and emotions…see Hansa Center blogs (www.hansacenter.com ) and Dr. Jernigan’s book, “Everyday Miracles by God’s Design”
For more advanced conditions add the following: · Prescription-only, daily injections of Homeopathic, Viscum Album (Uriel Pharmacy, Inc. ) as directed by your Healthcare Professional. · Hyperbaric Oxygen Therapy… Two 1-hour sessions per day for first 5 days, then two to three sessions per week thereafter.
Written by Dr. David Jernigan
Visit Dr. Jernigan's blog for updates.
Genetic Testing for Detoxification, Immune and Neurological Risk Factors in Environmental Illness Featured
As an environmental illness sufferer myself and someone who is in the final stages of clinical training to become a Nutritional Therapist having obtained a bachelor's degree in nutritional health, I have become interested in genetic testing.
In the past genetic testing of any kind has been extremely expensive and has tradtitionally looked only for genes that identify hereditary diseases. Now however there are commercially available tests that many naturopathic doctors and other functional medicine-orientated health care practitioners are utilising to better help patients with environmental illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, multiple chemical sensitivity (MCS), as well as those with chronic unexplained ill-health but no diagnosis.
Such testing allows for the detection of single nucleotide polymorphyisms (SNPs - pronounced "snips"), small sections of genetic code that determine, for example, the efficiency with which an individual can neutralise and excrete toxins or synthesise neurotransmitters by affecting the functioning of various enzymes and other chemicals.
This information for the first time allows health care practitioners and patients to modify environmental factors such as diet and tailor treatment programs to take genetic predispositions and weaknesses into account. This could potentially improve the success of interventions as rather than using a "one size fits all" protocol for each patient or diagnosis, an individual can be treated as just that, a unique individual.
Most who are suffering, or who have suffered from, an environmental illness, whether ME/CFS, MCS, or gut issues such as Candida overgrowth will attest to the fact that treatments that have worked for others have not helped them, and vice versa. This is because these illnesses are not the result of a single inherited gene (or a few genes), or an infection, poisoning, or other environmental exposure - these illnesses are the result of a complex interplay between genetic susceptibilities and a variety of environmental exposures accrued during life (and even before birth).
It is my hope that profiling of SNPs controlling metabolic processes known to be dysfunctional in environmental illnesses (and those that become apparent in the future) will help many sufferers regain a better level of health more quickly than has been possible thus far.
Genova Diagnostics have pioneered commercial genetic testing with their Genovations tests. Those likely to be of most help in determining factors underlying environmental illnesses in individual sufferers are the:
- DetoxiGenomic Profile
- ImmunoGenomic Profile
- Comprehensive Inflammation Profile
- NeuroGenomic Profile
Some of these profiles overlap in the SNPs they look for so history, symptoms and previous test results will no doubt help to determine which would be the most appropriate in your particular situation.
I will be adding review pages for each of the above profiles with detailed descriptions of what they test for and what results might indicate and I will link to them from this blog post as I do so (you can also learn more at www.genovadiagnostics.com or ask your health care practitioner).
It would be great to hear from anyone who has had any of these tests and your experiences with them. Please leave comments below as always!
Research indicates that the majority of symptoms in Lyme disease are caused by the release of toxins by the spirochetes. If that were not bad enough, for most people in the United States, the daily accumulation of toxins just from living, eating, and breathing is staggering!
Environmental toxins from our air, water, personal care products, medications, and food supply are jamming up the machinery of the cells, interfering with the regulation of the body.
Toxins are a global problem. There is virtually no one on the planet who does not need to detoxify the body on a continual basis.
Every person on the planet should be working to eliminate the sources of toxins in our house and life. Detoxification of the body must be a part of any effective Lyme protocol or one risks permanent damage to nerve and joint tissue from the toxic irritation.
Today more than 77,000 chemicals are in active production in this country. Our exposure to these chemicals is greater than at any time since the beginning of the Industrial Revolution. More than 3,000 chemicals are added to our food supply, and more than 10,000 chemicals in the form of solvents, emulsifiers, and preservatives are used in food processing and storage.
Ethyl alcohol, isopropanol, wood rosin, shellac, propylene glycol, silicone, ammonium hydroxide…
You are eating these particular toxins for breakfast if you’re eating non-organic commercial grapefruit, melons and fresh oranges from the supermarket…
Thiabendazole, mineral oil, methylparabin, dimethyl polysiloxane, benzimadazole…
You’re eating these chemicals for lunch if you had supermarket tomatoes, avocado, apples…
Fungicides botran, 2-6 dichloro-4-nitroaniline, orthophenylphenol…
Sound like a good balanced dinner?
You’re eating these yummy ingredients in sweet potatoes, onions, and limes from your local supermarket.
Fungicides are put into wax to provide a longer shelf life; even peeling your fruit and vegetables will not get rid of the chemical toxins, they often permiate the entire fruit or vegetable.
And we wonder why the United States is ranked 36th in all the nations of the world for health, according to the World Health Organization!
We cannot eat, breathe, and put toxins on our skin (personal care products) and get away with it for very long.
These chemicals are bioaccumlative over the course of a person’s life…meaning they accumulate in the tissues of the body gradually with continued exposure.
These chemicals are known to cause cancers, birth defects, damage to the immune system, and directly cause many other diseases.
When ingested, these chemicals can remain in the body for years, altering our metabolism, causing enzyme dysfunction and nutritional deficiencies, creating hormonal imbalances and lowering our threshold of resistance to chronic disease.
Besides food borne chemicals, we are continually subjected to poor air quality, chemically contaminated water, household cleaners, paint fumes, pharmaceutical drugs, pesticides, heavy metals (including mercury) and the list goes on and on.
Today, studies show that most of us have between 400 and 800 foreign chemical residues stored in the fat cells of our bodies. This occurs gradually over the course of our lives. These chemicals enter into the body either through the skin, lungs, or they are eaten.
Most of the time, these chemicals are bio-accumulative, meaning miniscule amounts accumulating over the course of years. These chemicals and heavy metals make up the “total toxic burden.”
When the amount of toxins exceed the body’s ability to excrete them, our body will begin to store these toxins. This bio-accumulation seriously compromises our physiological and psychological health and leads to chronic disease.
Environmental Protection Agency (EPA) Study of the U.S.A Toxic Load
Since 1976 the EPA has been conducting studies to determine the presence of toxins in the fat cells of the body. This study is called the National Adipose Tissue Survey (NHATS). The results of this study are staggering.
Across the United States, the EPA took samples of people’s fat cells (adipose) and analyzed the samples for the presence of various toxins. In 98% of the samples they found many toxins, including benzene, PCBs, DDE (a metabolite of DDT pesticide), dioxins, toluene, and chlorobenzene, all of which are highly damaging to the immune system and compromise every tissue in the body.
The EPA only looks for 100 out of the potential thousands of different toxins that could be present in the fatty tissue samples. Twenty different toxins were identified in over 75% of all the samples.
So, from this and other studies you can see that it is no so much a matter of “if” you have toxins in your body, rather how much! Remember that our goal is not to just get rid of Lyme spirochetes or your symptoms, but to remove anything that may be blocking your body’s healing mechanisms.
True health is not the absence of pain or symptoms, otherwise aspirin would be the ultimate longevity medicine.
The following is a partial list of known symptoms often related to toxicity:
• burning skin
• brain fog
• chronic fatigue
• chemical sensitivities
• frequent colds or flu
• feeling “sick all over”
• loss of dexterity
• low body temperature
• memory loss
• mood swings
• muscle and joint pains
• poor concentration
The list of potential toxicity symptoms for Lyme sufferers is the entire list of possible Lyme Disease symptoms since the symptoms are the result of the bacterial toxins.
As a result of this widespread environmental contamination, doctors are faced with increased rates of toxin-related cancers, neurological diseases, reduced immune function, allergies, and the newer diagnoses of multiple chemical sensitivities, chronic fatigue syndrome, and fibromyalgia.
Doctors are finding their usual treatments are not as effective as in the past due to the presence of these many toxins in people.
Did you know that few people actually die of cancer?
Authorities say that they actually die of toxemia, produced by an excessive buildup of toxins from the medications and the lifetime of accumulated toxins.
Did you know that you can not simply take supplements and laxatives to eliminate all of the toxins? You must be guided through a total body protocol to truly achieve detoxification. Consider the skin for a moment.
Did you know that your skin is one of your largest organs of elimination? Your skin should be releasing two pounds of waste acids every day!
Most people have spent their entire life blocking this process through lotions and powder and toxic antibacterial, deodorant soaps. So as you can see, two pounds of waste per day that is not being eliminated through the skin is going to add up and tax the body severely.
American Biological Medicine, as practiced and promoted at the Hansa Center for Biological Medicine , in Wichita, Kansas has heavy emphasis on facilitating the efficient removal of these toxins through various therapies, such as Frequency-modulated Low-Level Laser protocols, ST-8 Lymphatic Drainage Therapy, Infrared Saunas, strategic chelating and binding nutritional supplements and homeopathic remedies, and Lymphatic Massage therapy, just to name a few ways to help eliminate this interferance to your body’s ability to completely heal.
I feel I must apologise for my recent lack of blogging activity but I'm sure when I explain why you'll understand - plus the reason has given me the inspiration for this post!
As regulars will be aware I have suffered from Chronic Fatigue Syndrome (ME/CFS) for a long time - since I was 11, so 20 years now. Like many ME/CFS sufferers I am also burdened by adrenal fatigue, low thyroid function, hypoglycaemia, Candida and Small Intestinal Bacterial Overgrowth (SIBO) amongst other things. I also suffered from severe Multiple Chemical Sensitivity for a number of years in my early 20s but thankfully was able overcome it (touch wood)!
Like most suffering from environmental illnesses (or more appropriately here 'invisible illnesses') I have been constantly frustrated by the absence of any abnormal findings on conventional medical tests over the years. After all, if the standard lab tests are normal there can't possibly be anything wrong with us in the eyes of the average doctor - or perhaps we are just too difficult to deal with.
Recently however something significant did show up in some routine blood tests I had carried out by my GP. Ultimately however I once again ended up frustrated at the medical system here in the UK.
I had attended the doctor's surgery in an effort to obtain some form of evidence for the long-standing liver impairment I know to be present from my symptoms and various functional testing I have had carried out privately (e.g. detoxification profiles, toxic exposure profiles, intestinal permeability assessment etc). I described my symptoms of chronic, dull pain just under my rib cage on the right hand side, intestinal pain on passing stools, stool colour ranging from white to yellow and orange (not a healthy brown), fatty stools, yellowing of the skin (jaundice) etc. Credit to my GP as he always listens and subsequently examined me which involved palpating (pressing) on my body at various points around the liver, gallbladder and intestines. I indicated that the most pain was felt the close he pressed to the liver and gallbladder area. He subsequently ordered a standard liver enzyme blood test - the results of which came back well within normal ranges. Nothing I hadn't expected as low grade liver impairment and inflammation just won't show up on these tests - they look for enzymes released by hepatocytes (liver cells) when they die so only show up when major damage is currently being done to the liver as in alcoholic liver disease or viral hepatitis.
However, my GP also ordered a full blood count as a matter of routine and lo and behold it came back with findings that could not be ignored - my total leukocyte (white blood cell) count was officially low as were numbers of neutrophils and monocytes (vital players in the innate immune response - our first line of defence against infectious disease) and lymphocytes (white blood cells involved in acquired immunity that recognises and attacks specific targets). Here are those results:
On previous blood counts over the past 10-15 years all these results had been hovering just inside the bottom of the 'normal' range so no notice had been taken. This was the first time there had been obvious abnormality and signs of substantial immune impairment so my GP had no choice but to order a retest. Unfortunately, or fortunately depending on how you choose to look at it, the second set of results put me back just within normal range so no further action has been taken.
Now at this point I'd just like to point out what a great example this is of medicine not following the basic principles of science and being more concerned with finances and resources than the health of patients. Put simply I had two blood counts, one showed undeniably low leukocytes and one showed borderline levels. Now how can you make a decision not to take further action when you have one abnormal and one normal (just) result to work from? Not to beat about the bush - you can't! Scientists repeat tests over and over so they can see patterns in results. At the very least a doctor would need a third test to make any kind of reasonable decision about the status of my leukocytes and my immune system. Unfortunately that is not how things work within the National Health Service (NHS) in the UK and most conventional medical systems around the world. A test is just a snapshot - if blood was taken again today my results may very well be low again.
So what could have caused my leukocytes to be low on the first blood count? Well as I've just touched on a blood test is just a snapshot at a particular time and everything in the human body tends to show some natural variation throughout the day and night (diurnally) and over longer periods such as seasons. This is particularly true when you have a chronic illness such as ME/CFS. It may be that I have had low leukocytes on many occassions and this is just the first time it has coincided with me having a blood test. However, there are a couple of factors that immediately spring to mind that I think may account for the result at this time - stress and sugar.
As some regular readers will know, I am currently completing a bachelors degree in nutritional health and at the time of the test I was hugely stressed with writing my dissertation and another essay. This towards the end of a demanding final year with a lot of other work already having taken a lot out of me. My stress levels had also recently been chronically high due to ongoing problems with keeping this website online and running smoothly!
Stress is a factor that should not be dismissed in any disease. Over the past century scientists have gradually unravelled the links between stress and disease. Pioneers such as Hans Seyle in the 1950s showed how the body responds to stressful events by triggering the release of adrenal hormones, adrenaline and noradrenaline in the short-term and cortisol in the longer-term. With the advent of the branch of medicine known as psychoneuroimmunology it has now been established that each system within the body (immune, endocrine, nervous etc) rather than acting independently is in constant bidirectional communication with each of the other systems. As such stress is perceived by the brain/nervous system, which tells the endocrine to secrete various hormones, which bind with receptors on immune cells and direct its action. Unfortunately it is now established that chronic stress through the actions of cortisol and other hormones and hormone-like chemicals (neuropeptides) has the effect of suppressing immunity.
Other factors such as the food we eat can also significantly impact immunity. One dietary component which is particularly detrimental to the immune system is sugar. Unfortunately during the writing of my dissertation I was in the situation where I either had to give up or rely on a regular sugar fix (mainly from sugary drinks) to keep my brain working and my energy levels up. Ironic I know given my medical conditions and the fact I am studying nutrition - but having tried various more natural solutions to limited effect I was left with no choice if I was to meet the university's inflexible deadline. Rest assured I would not advise anyone do the same but I am extremely stubborn and there was no way I was going to risk my high grade average or drop-out of the course at this late stage! I know I can help myself and others with the knowledge and experience I've gained in the future so I had to get through the course by any means possible. Back to sugar itself - simple sugars in their various forms including glucose, fructose and sucrose have profound effects on leukocytes and immunity. The vast majority of various sugars from the diet are converted to glucose in the body - glucose being the type of sugar in the blood that is primarily used as fuel for the cells. Eating a diet high in sugar leads to high blood glucose levels which in turn increases the production of free radicals and other damaging chemicals such as advanced glycation end-products (AGEs) in the body. These chemicals can cause miscommunication between immune cells and the activation of genetic transcription factors such as Nuclear Factor KappaB (NF-KappaB) which has potent effects on immune cells and has been linked to viral infection, inflammatory and autoimmune disease, and cancer. Studies have shown high doses of sugar can reduce the ability of leukocytes to engulf bacteria in a process called 'phagocytosis' by up to 50%.
Stress combined with consuming large amounts of sugar therefore has the potential to lower both numbers of immune cells and their ability to function correctly. I'd urge everyone to look into the effects of stress and sugar consumption on immunity in more detail as it's both a fascinating subject and knowledge we as environmental illness sufferers can use to avoid negative influences on our health.
So, one again, please do not do as I did and take on the amount of work a degree course entails and then resort to sugar to get you through it as I did. I can assure you I am now back to a low carb diet and and meditating more than ever and taking walks in the countryside to manage my stress levels amongst other things!
If you suffer from ME/CFS or other environmental/invisible illness and have had some abnormal test results or you always get normal results despite feeling lousy and would like to vent your frustration please leave a comment below. Also if you'd like to discuss factors that impact on immunity go ahead and leave a comment too...
I received an email update this week on the work of the European Society for ME (ESME) that I thought you may be interested in. ESME is a Think Tank of top scientists in fields relevant to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) where the latest research and knowledge on the illness can be discussed and efforts made to propogate this to the medical profession to improve care for patients.
ESME was founded just last year and had its launch meeting on June 13th, in Stavanger, Norway. The launch was well covered by the mainstream media and the following are summaries of this coverage with links to full articles and videos.
ESME Press Summary 2009
SKY NEWS - UK
In connection with ESME's Think Tank meeting in Norway, Sky News aired a story on the 13th of June with the heading, "Could a Cure for ME be Near?" In the piece, Dr. Jonathan Kerr, a British ME-expert and researcher, expressed support for the idea of the Think Tank by saying: "It's really critical that scientists talk to each other more, collaborate more and do studies where they confirm each other's hypothesis and preliminary findings. Because we are in a time in this disease when we do have a lot of biochemical, biological abnormalities that have been found, but these all need to be validated and put in context of everybody else's work."
You can find the story here: http://news.sky.com/skynews/Home/video/Researchers-claims-cure-for-ME-may-not-be-far away/Video/200906215303486?lpos=Latest+Video_7&lid=VIDEO_1933822_Could+A+Cure+For+M.E+Be+Near?&videoCategory=Latest+Video
The press release for the launch of the new Think Tank was sent out on Newswire the week of the launch. In the press release, last year's Nobel Prize winner in medicine, Professor Luc Montagnier of France, gives his full support to the Think Tank and says: "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes."
You can read the press release on Newswire here:
DAGBLADET - NORWAY
One of Norway's biggest national newspapers, Dagbladet, published a two-page article about the launch of the Think Tank in Norway with the heading, "Wants to solve the ME-mystery." In the article Professor Kenny De Meirleir of the Think Tank panel tells about his new test for discovering hydrogen sulphide in ME-patients. Another member of the panel, world-renowned scientist Professor Ola Didrik Saugstad, compares the current treatment of ME-patients to the disgraceful way lobotomy patients were treated a few decades ago.
The article can be found in pdf-version here:
A-MAGASINET - AFTENSPOSTENS WEEKLY MAGAZINE - NORWAY
Aftenposten is Norway's second largest newspaper with over half a million readers daily.
The article focused on Lars Th. Narvestad, 45, who contracted ME after a stay in San Francisco in the late 1980's. He was totally bedridden for a period of time, but is now a little better and is challenging the government to commit money to biomedical ME research. In the article there are several references to ESME's first Think Tank meeting in Stavanger. Professor Ola Didrik Saugstad, a Think Tank panel member, compares the treatment of today's ME patients with that of lobotomy patients decades ago and says: "When the full history of ME is written one day, we will all be ashamed of ourselves."
The Norwegian Minister of Health is quoted as saying: "We know too little; we do not do enough."
The article also quotes the statement issued by the Think Tank panel after the meeting in Stavanger, which says that ME is clearly a physical disease and that further biomedical research is needed.
IRISH MEDICAL TIMES - IRELAND
The Irish Medical Times printed a story about Dr. Derek Enlander's work with ME. Enlander is an ESME panel member who represents Ireland. In the article Dr. Enlander clearly states that ME/CFS is a physical disease and needs to be treated as one. He also says about the name CFS: "Chronic Fatigue Syndrome unfortunately was coined in America and the term creates great scepticism. Doctors don't understand the disease. Then it was given the pseudonym of ‘yuppie disease' in the popular press, which added to the problem."
You can read the full article here:
ESME state that their goals for 2010 are to "increase information flow in Europe, organize training conferences for MD's and other healthcare personnel and to facilitate research collaboration. The training conferences will be organized in cooperation with local ME associations, thus allowing ESME to benefit from local connections."
They also aim to establish ME/CFS clinics throughout Europe and encourage other doctors step forward and specialize in the field of ME/CFS.
ESME appear to be a ME/CFS that us patients can really get behind. They are focused on advancing research and the education of doctors about the illness, both of which are still very much needed. Please visit the ESME website to learn more and perhaps make a donation there if you like what you read.
As someone who has suffered from chronic fatigue syndrome (ME/CFS), multiple chemical sensitivity (MCS), irritable bowel syndrome (IBS), adrenal fatigue (AF) and a host of related concerns for almost 19 years now, since the age of 12, I am acutely aware of the need to pace myself. I know I should not take on too much at once and allow myself time to relax and recuperate, at least to some small degree, yet after all these years I still find this extremely difficult.
ME/CFS patients have often been reported to be disproportionately Type A personalities as a group. This study refers to the "action-proneness" of patients i.e. our need to always be on the go and engaged in activity of some kind, whether physical or mental. I can certainly relate to that. Here I am so many years after becoming ill and I am singlehandedly running this website (which is now a BIG job!) and also trying to complete my studies for a bachelor's degree in nutritional health. I also find it very hard to say no to social invitations. I'm sure you can imagine I am not feeling too great at the moment as a result!
The following study talks about acceptance of the chronic nature of ME/CFS being associated with increased well-being:
I thought I had accepted this fact but looking at my life currently I think perhaps I have just directed my Type A action-proneness in a different direction. Not that this is all bad as my actions are hopefully helping others who are also ill. I have also discovered ways to help myself during work on The Environmental Illness Resource and my degree studies - I used to suffer terrible S.A.D. for example but am now able to get through the winters without feeling suicidal.
I concede however that once I complete my degree I do need to take a step back and look at how I can pace myself but still live a life that brings me a sense of well-being and fulfillment. It's a big ask as it is not in my nature to compromise and accept limitations but to enable myself to heal and be truly happy I know that some way, somehow, I must take this path.
Meditation and Eastern practices have helped me a lot in this area already but I have a long way to go. In any case....it's the journey and not the destination that are important...
What are your thoughts on this issue? Do you find it difficult to pace yourself? Do you accept the limitations imposed by your illness or try to ignore them and push back harder? Do you find it hard to say "no"? Let us know your thoughts by leaving a comment below!
For those of us suffering from environmental illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, multiple chemical sensitivity (MCS) and gut problems including irritable bowel syndrome (IBS), leaky gut syndrome (LGS) and Candida it can be hard to stay positive and enjoy life at any time of year but the holidays can be particularly difficult.
Just when the generally healthy majority are taking time out, indulging and letting their hair down us 'canaries' can often find life even more of a struggle than normal. At Christmas people are told to "eat, drink and be merry" - and most people happily comply but this poses a problem for us unfortunates.
First of all there is the eating. Most of us will have some kind of dietary restriction whether our own bodies have told us to avoid certain foods, we've discovered the "baddies" through our own research, or we've been put on a particular diet by a health care professional. Sweets and candies are everywhere this time of year but are almost universally a bad idea for the canary - they exacerbate hypoglycaemia and feed the bad bugs in our guts such as Candida and unfriendly bacteria. Then there are the snacks and nibbles packed with wheat, dairy and food additives that are highly tempting but no good for the majority of us with gluten and/or casein sensitivity or lactose intolerance. It's a dietary minefield and often it's highly temping to step on a metaphorical mine despite knowing the consequences will be unpleasant to say the least.
Then there is the drinking part. I for one cannot tolerate a drop of alcohol without getting an instant hangover. It might be worth it if I got to enjoy the pleasant relaxing and socially enhancing effects first but no - just a big fat headache (and that's just for starters)! It can be a frustrating time when everyone around you is enjoying their favourite alcoholic tipple and you're "enjoying" a glass of water or herbal tea.
Of course for those suffering from chemical sensitivities things are even worse. Lots of people wearing perfume and cologne, fragranced products bought as gifts everywhere, air fresheners in friends and relatives houses...there's no escape.
So onto the enjoyment part of our familiar phrase. First of all let's give ourselves some credit. Us canaries are a resilient lot and put up with things others couldn't even imagine both in the form of suffering often frightening and unbearable symptoms of illness and the way we are often dismissed as hypochondriacs and treated as if we are not quite right in the head. Still, if we do make it to gatherings and parties during the holiday season it can be pretty rough watching everyone else let go of their self-control and eat and drink whatever is put in front of them knowing that we must resist or risk making ourselves even sicker. And to add insult to injury the temptation is there constantly and people will often offer us food and drink and then greet us with a look of puzzlement and disdain as if we have the Christmas spirit of Scrooge when reality we'd like nothing more than to dive right in with everyone else.
Anyway, I am getting off track here, this was not meant to be a rant - I was looking for the positives wasn't I! I have found writing things down and making lists is a good way to put things in perspective so that's what I'm going to do. First 10 things I wish I could do during the holidays but can't because of my illness. Then 10 things that I am grateful for despite my illness (ah, there are those positives I mentioned!). I hope you will join me in this little exercise and add your own lists using the comments box below.
Ok so here are my lists:
10 things I wish I could do during the holidays
Drink what I like (lager in the pub with family and friends....and I also used to be partial to a glass of sherry or mulled wine)
Eat what I like (I'm not going to lie here - I would eat just about anything! Christmas cake with crumbly cheese would be nice. An English thing I think?)
Party until late
Play football/soccer in the annual game with old school friends
Go mountain biking
Go on a skiing holiday to the Alps (I was lucky enough to go on skiing trips every year when in high school)
Go shopping without being exhausted by the masses within minutes
Feel relaxed by the occassion rather than drained
Not have to explain myself all the time
10 things I am grateful for
I have a great family that loves me
I have great friends who understand and accomodate me as best they can
It still feels like a special time of year
I still get to catch up with old friends
I have not had a reaction to chemicals in years and no longer have to wear a carbon filter mask around people
I am still here
I am not terminally ill
I am still young
I have hope for the future
Last but not least - I don't need to go on a crash diet in the New Year!!
Well I certainly feel better for that. I hope you'll have a go too and get some benefit from it. Feel free to use some of my items if they strike a chord with you but let's see how many other things we can all be grateful for!
Best wishes and happy (early) holidays to all canaries out there :-)
Once upon a time Facebook was the domain of students who used the social networking site to keep track of friends and share their academic and non-academic exploits.
However, since Facebook opened its cyber-doors to the the online community at large it has grown into much more and believe it or not it now has much to offer people who are struggling with what we call 'environmental illnesses' on this site, but may also be termed 'unexplained chronic illnesses' or 'invisible illnesses'. We're talking chronic fatigue syndrome (ME/CFS), fibromyalgia, multiple chemical sensitivity (MCS), irritable bowel syndrome (IBS) and others.
On Facebook you will now find a multitude of interactive pages and groups devoted to these illnesses that both provide information and act as support and advocacy groups. Since many suffering from these illnesses are housebound these are ideal as an alternative to support groups in the real world where you might have to travel some distance to meetings and come home exhausted. These Facebook offerings mean you can spend as much or as little time getting the latest information, making friends and sharing experiences and support.
For those of you who already use Facebook below is a list of some of my favourite fan pages and groups relating to environmental illnesses which you can click straight through to. If you are yet to jump on the Facebook bandwagon I won't go into details here on how to use the site as there are guides available elsewhere on line but please do visit http://www.facebook.com/ and sign up for an account so you too can benefit from the information and support available on environmental Illnesses.
First I would recommend the pages for groups and individuals that regularly contribute material to The Environmental Illness Resource:
Chronic Fatigue Syndrome/Fibromyalgia (CFS/FM) is Treatable - based on Dr. Jacob Teitelbaum's work and treatment protocol.
MCS America - One of the best sources for multiple chemical sensitivity (MCS) information. Founder Lourdes Salvador does a great deal to further recognition and understanding of this disabling condition.
Phoenix Rising: A Chronic Fatigue Syndrome (ME/CFS) Website - Cort Johnson's page. Cort brilliantly translates ME/CFS medical research into layman's terms we can all understand.
Some more of my favourites:
Finally of course there is The Environmental Illness Resource page:
The Environmental Illness Resource on Facebook - Get updates on our new content and join in discussions!
I hope you'll join some of these groups and find them informative and supportive. After all we need all the help we can get!
If you like any other Facebook groups or pages that I haven't listed then please feel free to leave a comment below with the link...
Since Thursday of last week when news of research linking the XMRV retrovirus to chronic fatigue syndrome hit the headlines many patients (and I suspect their doctors) have been wondering what exactly this finding means.
The amount of media attention this discovery by the Whittemore-Peterson Institute for Neuro-Immune Disease (WPI) generated in the press was unprecedented. After having the WPI press release delivered to my email inbox, the next day my mum handed me a copy of The Independent (one of the major "serious" national newspapers in the UK) with a front page article asking 'Has science found the cause of ME?' There was also an editorial piece coming down squarely on the side of us much maligned chronic fatigue syndrome (ME/CFS) patients and concluding that it was about time we were taken seriously.
It is rare to find any ME/CFS news in the mainstream media but the story was the same across the board. The London Telegraph stated 'Most cases of chronic fatigue syndrome linked to virus', 'Virus Is Found in Many With Chronic Fatigue Syndrome', reported the New York Times, while the Washington Post ran with 'Virus Associated With Chronic Fatigue Syndrome'. So the media certainly thinks this is a big deal for us ME/CFS patients but what does the wider ME/CFS community, including patients, doctors and researchers, think of the results of this study.
One can't help but note that this is not the first time a virus has been seen as the cause, or at least a major contributor to ME/CFS, with the Epstein-Barr Virus (EBV) and Human Herpes Virus 6 (HHV-6) being prime examples. Both have been found in significant numbers of patients. Indeed even a retrovirus such as XMRV, which is now causing such a stir, has previously been found in ME/CFS patients.
Dr. Elaine DeFreitas of the Wistar Institute in Philadelphia discovered in the early 1990s a novel human retrovirus in ME/CFS patients. Her finding was subsequently confirmed by two other prominent researchers as well as a commercial laboratory. After Dr. DeFreitas had published a meticulous paper in a top journal and was almost done sequencing the virus' genetic code the The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) reportedly engaged in a smear campaign against her as her findings did not fit with their psychological views of the causes and symptoms of the disease. The work was not finished and no other researcher has dared take up the baton.
So is XMRV THE cause of ME/CFS and the key to successful diagnosis and treatment as the avalanche of media attention may lead some to believe? In a Q&A session in the New York Times, Dr. Nancy Klimas, an immunologist specialising in ME/CFS and a board member of International Association for Chronic Fatigue Syndrome (IACFSME), is cautious.
She states that "It is important not to take these new findings about the XMRV virus as anything more than an exciting new development. We need confirmatory studies, then studies to see if the virus is contributing to the cause of illness persistence and symptoms."
"The good news is that if XMRV is linked to C.F.S., there are many antiviral drugs that have already been safety tested in H.I.V. that may inhibit viral replication. So those studies could be designed very rapidly."
Dr. Klimas also suggests (and many experts will no doubt agree) that XMRV may be just one of several viruses including EBV, HHV-6 and enteroviruses, that may become reactivated in people with ME/CFS due to immune dysfunction - rather than actually causing the disease
The researchers at WPI who conducted the study, led by Judy Mikovits, Ph.D., themselves cautioned that the results far from prove that the virus causes ME/CFS. They admit it may be well just be part of the picture. They suggest that the virus may at least contribute to the development of the disorder, however.
William Reeves, head of the CDC's CFS research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS". The CDC and Reeves have been widely criticised by the ME/CFS community for lack of progress in uncovering the cause(s) of the disease but Reeves says the CDC is already trying to replicate the WPI findings.
The patient community online has been a buzz over the past week since the news of the findings first broke. Cort Johnson, friend of The Environmental Illness Resource and respected ME/CFS research reporter, has set up a forum section specifically for XMRV-related topics on his website Phoenix Rising which already has many hundreds of posts. ME/CFS patients all over the world are using the internet to discuss what the study results mean for them. Will this lead to a diagnostic test and treatment? Does this mean ME/CFS is contagious? Does ME/CFS run in families? These are just some of the question being asked.
My own feelings are that the discovery of the XMRV retrovirus in so many ME/CFS patients is certainly important but needs to be confirmed by other studies. I think it is likely to turn out to be another piece in the puzzle of what is an extremely complicated disease rather than THE breakthough the media frenzy would suggest. As Dr. Klimas pointed out one major positive is that drugs to fight retroviral infections are already well studied and widely available due to the huge research effort into the HIV virus. If the XMRV findings are confirmed then these treatments may turn out to be effective in at least a subset of XMRV-infected ME/CFS patients as well.
However, the biggest positive to come out of this research by WPI in my humble opinion is not the result itself but the kick in the behind it seems to have given the CDC and other governmental and medical organisations to get their acts together and seriously investigate ME/CFS. Let's hope WPI and other independent and semi-independent ME/CFS research institutes continue to further our understanding of the disease and force more action from governments and the medical profession.
What are you thoughts on all this? Please let us know in the comments section below and in the forums.
Hi everyone. My time is currently very limited due to just returning from a trip to California and having a backlog of studying and assignment deadlines for my degree course. I didn't want to leave another week "blogless" however so I thought I'd just draw your attention to a potentially powerful therapy known as 'phospholipid exchange' which Helen64 posted a question about in the forums this week.
To explain the principal of the therapy we first need a little bit of biochemistry. Basically, cells in the human body have a cell membrane made up of fatty substances called phospholipids along with fatty acids. These fatty substances give the cell membrane a level of fluidity that allows them to efficiently allow nutrients to enter the cell and toxins to be expelled amongst other important functions such as maintaining the structure and shape of the cell.
A physician by the name of Richie Shoemaker M.D. determined that environmental illnesses such as chronic fatigue syndrome, fibromyalgia, autism, and multiple chemical sensitivity were the result of an initial exposure to neurotoxins; be it from viruses, bacteria, parasites, mercury poisoning, or any other source. According to Shoemaker this leads to the breakdown in the integrity of the cell membrane due to disturbances in phospholipid and fatty acid metabolism and this leads to increased inflammatory processes, toxicity, and environmental illness.
Phospholipid exchange therapy is a means to restore the integrity of the cell membrane thus reducing inflammation and toxicity and restoring health.
The therapy involves the administration of phospholipids (predominantly phosphatidylcholine) intravenously along with supporting treatment to achieve the restoration of cell membrane health. Once this is achieved the body is in a position to heal itself as inflammation is reduced and toxins are more efficiently dealt with.
The work of Shoemaker has been built on by a number of doctors and researchers who developed The Detoxx System which incorporates phospholipid exchange along with IV glutathione (the body's major antioxidant), essential fatty acid supplementation, special dietary measures, and other supporting therapies.
Learn more about phospholipid exchange therapy and The Detoxx System:
Book: The Detoxx Book
As always, please let us know if you have had experience or are knowledgeable about the therapy discussed by leaving a comment below.
Best of health!
As someone who became ill with chronic fatigue syndrome at the age of 11 I have spent my entire adolescence and adult life struggling with the condition.
My personality is one that could be classed as predominantly type A and I like to "burn the candle at both ends" as the saying goes. After being diagnosed with ME/CFS and discovering there was no treatment or cure available this led me to ignore my illness and push even harder during my teens. I continued full-time at school, took part in physical education (P.E.) classes, played soccer with my friends after school and went to parties.
For a while this seemed to work as I was very happy which obviously makes you feel better anyway. Inevitably however things began to go down hill in my late teens and my life eventually came to an abrupt halt after a two semesters of university. I was then virtually bedridden for a number of years.
I'm sure many of you have had similar reactions to your illness even if you didn't develop the condition as early as I did. Unfortunately we can't just ignore it and get on with things as normal so we have to adapt.
I spent many years researching my illness and gradually found treatments and lifestyle changes that have helped. Information about these can be found throughout this site. They include diet, nutritional supplements. herbs, medications and the removal of toxins from my life (I subsequently developed multiple chemical sensitivity).
Old habits die hard unfortunately so I am now running this website single-handedly and also studying for a degree in nutritional therapy. It has to be said though that having a purpose in life as these things have given me can be very beneficial. I realise many of you will be unable to undertake such tasks but doing any task for yourself however small or seemingly insignificant can increase your sense of self-worth hugely. The key is getting the balance right. Having a focus and achieving things is great for our self-esteem and therefore our health but only if we don't overdo it and balance it with rest and relaxation.
It has been a real struggle for me to change my ways but I thought I'd share a few tips on how I now cope with my activities and keep stress under control. Most are obvious but are often surprisingly hard to stick to:
1. Don't Take on Too Much - If you are to avoid getting sicker you must know your limits. Once you accept these limits and live within them you can start to enjoy life again (albeit with less going on and at a slower pace than before). Taking on too much only leads to further exhaustion and worsening of symptoms. If you're like me and find it hard to say "no" to people then learning to be more assertive and taking control is essential. Assertiveness training and other techniques can help here. There is nothing wrong with saying "no".
2. Time Management - Following on from knowing your limits is time management. If I have an essay to write I make sure I start work on it way before the deadline because I know that it takes me longer to do things than it would if I were 100% healthy. This way I can makre sure I get it done on time without adding too much stress to my life. Rushing to do things at the last minute is the last thing you want if you suffer from ME/CFS. It only leads to worsening of symptoms and relapses.
3. Sleep - Chronic fatigue syndrome experts agree that disordered sleep (mainly a lack of deep sleep) is a major contributor to symptoms and that making sure patients get the best night's sleep possible is essential to feeling better. How you achieve this doesn't matter too much but things that help include:
Medications - e.g. clonazepam, sonata, amitriptyline
- Supplements - e.g. melatonin, 5HTP, l-theanine
- Herbs - e.g. valerian
- Sleep Hygiene - e.g. getting to bed at the same time every night, avoiding stimulants, avoiding excitement, avoiding too much activity, avoiding bright lights and lots of noise.
- Relaxation Techniques - e.g. breathing techniques, self-hypnosis
Getting to bed as early as possible is also important as much of the repair work and release of important hormones (e.g. growth hormone) occurs efficiently only if you're asleep before midnight. This is often hard for those of us with ME/CFS as changes in adrenal hormones and circadian rhythm make is sleepy in the morning and more awake at night! Hopefully the interventions above should help.
4. Relaxation Techniques - I've found techniques such as deep breathing, self-hypnosis, and visualisation to be very helpful if I feel things are getting on top of me. Just taking a few minutes to breathe deeply can restore calm and allow you to get on with things.
5. Meditation/Prayer - I am not a religious person but am open to the idea that there is more to reality than we know. Whether meditation and prayer work on a spiritual lvel or purely a mental and physical level they have been proven many times to be effective in relieving stress and even reducing the incidence of disease. I practice meditation every morning and find it wakes me up, focuses my mind and gives me the motivation needed to tackle any tasks before me during my day.
6. Socialising - Having some form of social contact is essential to well-being but make sure it is positive. If you have friends who use you or are a drain on your energy reserves it may be best to limit contact with them. Do things that are uplifting (with people that are uplifting!) without over-doing it.
7. Personal Time - A simple one this. Make sure you have time in your day just to drop everything and be alone. People, activity, light, and noise can all be draining so just take a while to have some peace.
8. Hobbies/Entertainment - Another simple one - do things you enjoy. It may be as simple as watching your favourite tv show or listening to music or it may be a hobby that provides enjoyment and also brings with it a sense of accomplishment.
9. Get Out of the House - We ME/CFS sufferers tend to spend a lot of time couped up in our homes. I work at home and study at home and it does get to me and drive my stress levels up! I find that if I get out for 30 minutes or an hour just to drive to the shops or visit a friend nearby, when I come back I am again able to get on with the jobs at hand much more relaxed and be more productive.
10. Exercise - I'm not talking about running a marathon here I'm just talking a short walk around the block, a few lengths of a swimming pool or whatever you can manage. As you as you don't do too much it can only be beneficial for your health and your mood and stress levels. It's about knowing your limits again. I used to love the really physical sports such as soccer, tennis and athletics but know they are currently not a good idea. I am however able to play golf which allows me to get some exercise and enjoy the sense of competition that all sports lovers crave!
Hopefully some of these tips will be helpful to you. As a long-term sufferer of chronic fatigue syndrome all I can say is that knowing your limits and adapting your life around them is key. Yes you will undoubtedly have to make sacrifices but you can still lead a very productive and happy life.
Best of health friends!
You may have seen in the news media this week that new research suggests antidepressant drugs may damage men's sperm and increase the risk of infertility. Researchers from Cornell Medical Center in New York found that some men given the common SSRI antidepressant paroxetine (Paxil, Seroxat) for four weeks had far higher levels of sperm with damaged DNA. Experts say this does not necessarily mean these men would have more trouble becoming fathers but that it was certainly a cause for concern.
So here we have another reason to look for alternatives to the antidepressant drugs which are prescribed to many millions of people every year. Earlier this year it was revealed that drug companies had buried studies showing that these drugs are largely ineffective in all but the most severe cases of depression. Before that paroxetine was linked to an increased risk of suicide.
In a previous blog I have talked about nutritional and herbal supplements that can help to combat depression. This week I'd like to talk about a therapy known as mindfulness-based cognitive behavioural therapy (MCBT) which may be an effective alternative to antidepressants for depression and anxiety and may also help those with chronic fatigue syndrome (ME/CFS), fibromyalgia and environmental illness. MCBT is a combination of minfulness meditation, a technique derived from Buddhist and Hindu traditions, and cognitive behavioural therapy (CBT).
Cognitive Behavioural Therapy (CBT)
CBT is a therapy which aims to identify negative thoughts, assumptions, and beliefs and highlight how they are related to negative emotions and ultimately actions and behaviours which only serve to worsen a person's mood and/or medical condition. Once this has been accomplished CBT aims through various methods to replace these with more, realistic, positive and beneficial thoughts and behaviours.
Techniques employed in CBT include keeping a diary of significant events and associated thoughts, feelings and behaviours; questioning those which may be unhelpful and unrealistic; trying out new ways of reacting to these situations; and gradually facing situations and activities that may have been avoided in the past.
I have had a course of CBT myself after being referred from a psychiatrist whom I was seeing about my health problems which included depression, anxiety, ME/CFS and irritable bowel syndrome. CBT is commonly used for these conditions. The use of CBT for ME/CFS is controversial because although a few studies have found it to be helpful when patients are surveyed it generally gets a resounding thumbs down verdict. I have to say I would also rate it this way. Don't get me wrong, the theory behind CBT all makes a lot of sense and I found it both interesting and enligtening looking at how my thoughts, beliefs, and emotions all influenced the way I behave. The problem is that I found CBT gave me little in the way of tools to implement lasting changes based on what I discovered about myself.
Mindfulness-Based Cognitive Behavioural Therapy (MCBT)
I was left to myself to discover the tools I felt were missing in CBT and I did....in the form of meditation. After beginning the practice of regular meditation I found that it quickly had profound effects on my mood, self-esteem and self-believe, motivation, and general cognitive abilities; all of which helped me to make positive changes in my life and implement the changes identified in my CBT sessions.
I am clearly not the only one who has found this combination of meditation and CBT to be effective as mindfulness-based cognitive behavioural therapy is increasingly being offered to patients.
MCBT is based on the work of Dr Jon Kabat-Zinn, a researcher who specialised in the mind-body interaction, and had been practising mindfulness meditation as part of Zen Buddhism for many years. Building on Kabat-Zinn's work MCBT was further developed by Zindel Segal, Mark Williams and John Teasdale. The therapy has proven very effective for depression in clinical studies and is now endorsed by the UK's National Institute for Health and Clinical Excellence (NICE).
Mindfulness meditation teaches us how to focus on the present moment and act with purpose rather than letting judgements about past events or fears about what may happen in the future affect how we feel right now. Being focused only on the present in this way helps us to respond positively to situations rather than react in a negative way. As a result the use of mindfulness may better prepare people to implement the changes in thought and behaviour indentified by the traditional CBT part of the therapy.
From my personal experience I would certainly recommend that anyone suffering from depression/anxiety or chronic illnesses such as ME/CFS and fibromyalgia if offered CBT should instead ask that they be referred to a therapist who uses MCBT instead, or seek one out yourself. Together meditation and CBT can be a powerful tool where CBT alone often falls down.
Learn more about MBCT:
The Mindful Way through Depression: Freeing Yourself from Chronic Unhappiness
I was doing some searching online yesterday for new fibromyalgia and chronic fatigue syndrome (ME/CFS) articles for the site and stumbled across a few blogs and sites maintained by psychiatrists (I will not provide links as I am not one for personal attacks).
These sites and blogs had pages dedicated to fibromyalgia and ME/CFS and I was disappointed (but not surprised) that these individuals and the speciality of psychiatry as a whole still dismiss an organic basis for these illnesses almost out of hand. If I were a cynic I might say it is almost like they are trying to hang on to patients who would be better served by other professionals and forms of treatment.
One psychiatrist writing on fibromyalgia seemed to have a fondness for pointing out there are NO (his emphasis) lab tests to diagnose the condition. He used this point to bolster his position that fibromyalgia may not even exist and that patients might actually be suffering from depression and should be treated by individuals from his profession with therapy and antidepressant medications.
It is certainly true that there are currently no lab tests to diagnose fibromyalgia. This is a fact. On the other hand there is available a large body of research that when taken into consideration clearly indicates that fibromyalgia is an organic disease that, while having certain characteristics in common with depression, is almost certainly a distinct condition.
It has become clear that in fibromyalgia there is 'central sensitization' of the nervous system so that nerve cells in the entire body become overexcitable. The differences are clear between fibromyalgia patients, healthy individuals, and importantly, patients geniunely suffering solely from depression and other psychiatric disorders. According to Dr. Rodger Murphree , a doctor who aims to treat the underlying causes of fibromyalgia, current knowledge tells us that "Fibromyalgia patients have a reduction in their pain threshold (allodynia), an increased response to painful stimuli (hyperalgesia) and an increase in the duration of pain after nociceptor stimulation (persistent pain)."
Studies have shown that those with fibromyalgia have levels of a chemical called nerve growth factor (NGF) that are four times higher than normal. This increased NGF results in an increase in levels of another chemical called substance P. It is substance P that increases the sensitivity of nerves to stimuli which heightens patients' awareness of pain. Interestingly recent research has also shown that this heightened sensitivity in fibromyalgia isn't restricted to the sense of touch but that patients are also hypersensitive to noise and it is likely this extends to all senses.
It is very common for fibromyalgia and ME/CFS patients to complain of being sensitive to bright light and noise and that these exacerbate symptoms. This is not something that is associated with depression.
These psychiatrist authored websites also like to point out that those doctors that disagree with their position on fibromyalgia are making good money out of treating patients. On this point I would say this; if you are a fibromyalgia patient who has had little or no relief from the therapy and antidepressants you've been offered wouldn't it be natural to seek out the relatively few doctors who see the condition for what it is and offer more meaningful treatment. It's no wonder those few doctors who treat fibromyalgia as the physical illness it is have long waiting lists and make good money when the treatment on offer elsewhere is so inadequate.
Besides, can psychiatrists really have a beef over money? They get paid handsomely for doing very little in a profession that has very little solid ground to stand on. The mainstays of psychiatric treatment are antidepressant drugs and talking therapy. Antidepressant medications were recently shown by researchers from Hull University in the UK to be no more effective than placebo for the vast majority of patients when all studies were included. The researchers used the US Freedom of Information laws to reveal that drug companies had only been presenting the results of studies that gave a positive view of their products. Talking therapies have historically been based more in philosophy than science, although newer approaches have at least addressed this to some degree.
Psychiatrists tell us that antidepressant drugs such as the selective serotonin reuptake inhibitors (SSRIs) such as Prozac/Paxil/Seroxat and old tricyclic antidepressants such as amitriptyline are very helpful in fibromyalgia and ME/CFS. The evidence for this is far from convincing. On a personal note I saw a psychiatrist for a couple of years (I have ME/CFS) and was prescribed three different SSRIs, amitryptaline, and an antipsychotic called respiridone. None of them helped at all. All three SSRIs and respiridone appeared to be completely inert, not helping any of my symptoms and at the same time not giving me any side-effects. Amitriptyline certainly knocked me out (so I guess that's classed as a successful sleep treatment) but left me extremely groggy in the morning even at very low doses and also resulted in worsening of memory function and concentration. These side-effects are common as this class of drugs blocks the action of acetylcholine, an important neurotransmitter.
The blogs and websites of psychiatrists I was reading also liked to repeat the standard line that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are the most effective treatments for fibromyalgia and ME/CFS. It may be true that there are clinical studies suggesting these therapies are helpful. In the real world however the evidence against them is damning. In the UK this summer patients and medical researchers aware of the biochemical basis of these illnesses went to court to make a stand against national guidelines advocating CBT and GET.
At the time Dr. Charles Shepherd, Medical Director of the M.E. Association, pointed out that the evidence for the effectiveness of these treatments remains weak and inconsistent, especially for group CBT sessions. Additionally, based on evidence submitted by CFS/ME patients themselves, the government's chief medical officer's report concluded that CBT produced "no change" in 67% of cases and actually made the patients' condition "worse" in 26% of cases. In addition, around half of the patients reported that inappropriate exercise therapy had also made their condition worse.
On a personal level I have tried both of these therapies. CBT made a lot of sense in theory but did not provide me with any significant improvement in my condition. It occurs to me that the positive studies on CBT may be due to the short term hope it may give patients. It is uplifting when you feel you can make positive changes to your life and this may bring about improvement in symptoms on its own but when lasting improvements fail to materialise symptoms worsen again. With regards to GET. It just doesn't work in my experience. Biochemical research shows that fibromyalgia and ME/CFS patients have problems with energy production at the cellular level. Patients can't increase their activity according to a GET schedule because the mitochondria in their cells are simply incapable of producing any more energy!
It's my personal experience as an ME/CFS sufferer that my illness is most certainly physical in origin. I have various lab tests (both conventional and those used in functional/integrative medicine) showing as much and with a passing knowledge of the symptoms of depression it is obvious to any fibromyalgia or ME/CFS patient that that is not what they are suffering from. I have gained no benefit from antidepressant drugs, CBT or GET. On the other hand I have gained a lot of benefit from treatments recommended by doctors working from the starting point of these illnesses being physical in origin (the same doctors psychiatrists seem to be accusing of "cashing in" on my suffering).
It is my hope that in the near future patients like myself will not be subjected to ignorance and useless 'therapies' recommended by psychiatrists, especially early in the disease process when the chances of more appropriate biochemical based treatments being successful are at their highest.
Back in February of this year the US government admitted that in the case of young Hannah Poling, a reaction to vaccinations she received had resulted in her developing autism.
This admission sent the media, bloggers and online autism forums into a spin with many seeing it as concrete proof that vaccines are the cause, or at least a cause, of the developmental disorder. Medical experts however maintained that Hannah had an underlying mitochondrial disorder, which they said, was extremely rare and so the same process could not account for a significant number of other cases of autism.
It now turns out however, that the medical experts may have been wrong! Results of a new study announced on Monday by the United Mitochondrial Disease Foundation (UMDF) reveal that at least one in 200 healthy humans "harbors a pathogenic mitochondrial mutation that potentially causes disease." The landmark study is published in the current issue of the American Journal of Human Genetics.
What the research demonstrates is that contrary to what the medical experts were saying back in February, mitochondrial disease and milder dysfunction is in fact NOT a rare occurence. This remarkable finding could be a key piece of the puzzle, not just in autism, but in a host of other unexplained diseases.
Mitochondria are miniature power stations found within most cells, converting glucose and oxygen into energy in a form the body can utilise. The brain and central nervous system demand large amounts of energy to function efficiently so contain a high concentration of mitochondria.
Speaking to David Kirby of The Huffington Post, UMDF Executive Director and CEO Charles A. Mohan, Jr said, "What this says to me is that more than 1-in-4,000 people have mitochondrial disease". Mohan continued, "And it tells me that 1-in-200 could develop some type of mitochondria-related disease over the course of their lifetime, depending in part on environmental triggers."
A few months ago researchers in Baltimore published results from a study of 30 children from one autism clinic who it was found all had nearly identical markers for mild mitochondrial dysfunction. One of these autistic children being Hannah Poling.
The researchers discovered that all 30 children were developing normally until they encountered some type of immunological stress, either a typical childhood virus or a vaccination(s), when they began showing signs of regressive autism. In Hannah and one other case the trigger was thought to be the administration of vaccines while in the remaining 28 children a viral infection was the likely culprit.
So although much more large scale research is required to say for sure, it now seems that a much larger percentage of the population than previously thought has some form of mitochondrial dysfunction which might leave them open to developing various medical conditions. Whether they do become ill depends in part, as UMDF Executive Director Mohan says, on the environmental triggers they are exposed to.
It seems like childhood viruses and vaccines (particularly when many are given close together) are likely triggers for mitochondrial dysfunction in those with susceptible genetics but what other environmental triggers could trigger such dysfunction? Mercury and other heavy metals? Pesticides? Petrochemicals found in personal care and household cleaning products? Many autism organisations are already pushing for more research into the interaction between such environmental triggers and genetics in the genesis of the disorder and these findings relating to mitochondrial dysfunction will only strengthen the case for well funded and designed studies.
In children whose brains are developing rapidly and require vast amounts of energy it seems that mitochondrial dysfunction leads to developmental disorders such as autism. In adults however other conditions may result.
Mitochondrial dysfunction and low cellular energy is seen in chronic fatigue syndrome (ME/CFS) patients. Interestingly this condition often follows an acute viral infection or exposure to pesticides. Could it be that in older children and adults mitochondrial dysfunction triggered by viral infection or toxic insult often results in ME/CFS rather than autism? Only further research can answer this question. It is also interesting to note however that ME/CFS patients commonly report adverse reactions to vaccinations. On a personal note as a ME/CFS sufferer I was acutely ill for a week after a tetanus vaccination. My arm swelled up like a balloon around the site of the vaccination and I was pretty much totally incapacitated.
For more on mitochondrial dysfunction in ME/CFS see this article by Dr. Sarah Myhill: Chronic Fatigue Syndrome - Definition, Test & Treatment
Mitochondrial dysfunction has also recently been implicated in depression. It's hardly surprising that if the cells aren't producing as much energy as they should that mental energy and mood will suffer. A study published in March of this year indicated that people whose cellular energy production was at the lower end of normal are at increased risk for developing depressive illness.
Read more about this here: Depression may be caused by poor cellular energy production
These findings on the prevalence of mitochondrial disease and dysfunction are exciting and very important for the future direction of research into autism and other environmental diseases. They open up the possibility that these conditions can be avoided by identifying environmental triggers and perhaps effectively treated with nutrients and medications which correct mitochondrial dysfunction.
Tomorrow is the longest day of the year and the official start of summer in the northern hemisphere (Sorry Aus/NZ etc!). Here in the UK the longer days mean that at least there is more chance of there being periods of clear skies while it is still light!
So I thought this would be a good time to discuss sunshine and vitamin D in relation to chronic fatigue syndrome (ME/CFS) as there seems to be some disagreement over how vitamin D metabolism is affected in patients and whether extra, either from sunlight or supplements, is needed.
From a personal perspective, as part of my illness I suffer from seasonal affective disorder (S.A.D.) which is also known as winter depression. For a number of years I would become suicidally depressed during the winter months and then my mood would lift substantially from late March. After a few years of this it became obvious that lack of light in winter was the problem so the next year I made an effort to wake up at dawn to maximise the amount of light I was getting. Sure enough my mood remained much better and more stable and I was actually able to enjoy the winter with Christmas and snow and everything else once again! It wasn't just my mood that was affected however as physical symptoms such as the aches and pains characteristic of ME/CFS were also much better. Obviously I wasn't outside sunbathing in winter so the benefits here were likely due to the affect of light on the pineal gland, melatonin and serotonin production, and regulation of the sleep-wake cycle rather than anything to do with vitamin D.
In summer however, when my skin is exposed to the strong sunlight, I also experience very noticeable benefits and these are likely due to the production of vitamin D by my skin as it is hit by UVB radiation. I experience more energy, greater motivation, better sleep, and again fewer aches and pains. The benefits increase the longer I am out in the sun and really are very distinct and noticeable.
What evidence is there that sunlight and vitamin D are good for ME/CFS patients?
Research by Michael Terman, Ph.D., and colleagues found that a significant subset of 110 ME/CFS patients studied had symptoms resembling S.A.D. which worsened in winter, as did their other ME/CFS symptoms. They suggested increased sunlight exposure or use of light therapy as potentially useful treatments.
Anecdotal reports from patients and their doctors suggest light therapy does effectively relieve the symptoms of ME/CFS in many cases. Many books on ME/CFS contain a section devoted to light therapy included 'From Fatigued to Fantastic' by Dr. Jacob Teitelbaum, a leading ME/CFS specialist.
Vitamin D deficiency is often misdiagnosed as ME/CFS or fibromyalgia as the major symptoms include muscle pain and weakness, according to Michael F. Holick, MD, PhD, of the Boston University School of Medicine. Other researchers (Shinchuk & Holick) agree saying that all patients presenting with symptoms suggestive of ME/CFS should be tested for vitamin D deficiency.
- Some studies have suggested that over 25% of ME/CFS patients have low vitamin D levels.
- Studies have shown that vitamin D supplements can significantly reduce pain with one showing that vitamin D deficient people require twice as many painkilling drugs.
- Vitamin D is a powerful immune system modulator with most immune cells having receptors for the active form of the vitamin. It is suggested that vitamin D may enhance innate immunity and inhibit the development of allergies and certain autoimmune conditions. These actions may be important for the immune dysfunction in ME/CFS.
Many anecdotal reports from ME/CFS patients suggest that vitamin D supplements or increased sunlight exposure are of benefit. Some useful links on this subject are:
What evidence is there that sunlight and vitamin D are NOT good for ME/CFS patients?
Given the above I assumed that as a ME/CFS sufferer I was doing myself good by spending as much time in the sun as possible and eating a diet high in vitamin D rich foods such as oily fish: a diet which is generally very healthy. After all I felt much better when I was in the sun! I began to doubt this assumption only when I came across information about the Marshall Protocol (MP).
The MP is based on the idea that ME/CFS is the result of overactivation of parts of the innate immune system (TH1) which results in chronic inflammation. This immune system dysfunction is said to result from chronic infection with cell wall deficient organisms (CWDs) which are able to hide within cells and evade the immune system.
Where does vitamin D come into it?
As a result of the overactive immune response macrophages (large immune cells that gobble up invaders!) convert the inactive form of vitamin D (25 D) into the active form (1,25 D). This results in abnormally high levels of 1,25 D which interfere with the functioning of the immune system further as well as causing dysfunction of other bodily system which are regulated by vitamin D (there are many!). The high levels of 1,25 may therefore contribute to the symptosm of ME/CFS either directly or indirectly.
What of the research showing low vitamin D in ME/CFS patients?
Most research that has looked at vitamin D levels in ME/CFS has only tested levels of 25 D and has ignored 1,25 D. According to Dr. Marshall and colleagues this has led researchers to incorrectly conclude that patients have a vitamin D deficiency and recommend supplementation. What is actually happening they say is that any 25 D synthesised in the skin or obtained from the diet is immediately converted into 1,25 D by macrophages due to the chronically overactive immune response.
The Marshall Protocol - Avoid Vitamin D!
Dr. Marshall developed a treatment protocol for ME/CFS and other chronic inflammatory conditions based on this vitamin D dysregulation. The MP involves the use of low dose antibiotics to kill the CWDs, immune modulators to correct the immune response, and avoidance of sunlight and vitamin D in the diet to bring levels of 1,25 D back to normal.
At first I was sceptical of this approach, mainly because I felt so much better in the sun. The MP literature however suggests that this may be due to temporary suppression of the immune system components which are trying to fight the CWDs by even higher 1,25 D levels. The more I learn about the MP the more it makes sense. I have to say I am put off a little by comments such as the following on the offical MP website by a nurse involved in the ongoing MP research project:
"Keep in mind also, that the ingestion of Omega 3 fatty acids is promoted to decrease inflammation without the realization that inflammation is caused by intracellular bacteria. Dietary supplements have not cured anyone but the MP will help you recover your health."
This is an extremely arrogant statement considering the MP is experimental and has not been proven in large trials of patients to be effective. It is not strictly factual as Omega 3 fatty acids have been shown to be an effective treatment for ME/CFS in studies by researchers such as Professor Basant Puri. I found this arrogant attitude throughout the MP website and it is a big turn off for me but still it does not detract from the logic behind the protocol.
I would like to see a lot more research into vitamin D levels and the MP specifically for ME/CFS and hope to get my own 25 D and 1,25 D levels tested when I can. Until then I will play it safe try to spend only moderate time in the sun and not overdo the vitamin D rich foods and supplements.
It would be great to hear from anyone who is on the MP protocol or has recovered through using it. Please leave a comment below!
Back in November of last year I reported on the efforts of the Fair Name Campaign which has the aim of promoting a name which truly represents the medical and patient reality of the illness currently known as Chronic Fatigue Syndrome in the United States and elsewhere.
The majority of patients, as well as some in the medical community (doctors, researchers etc), have felt that the name Chronic Fatigue Syndrome (CFS) trivializes what is a very serious and disabling illness. Not only that but it is medically inaccurate and does nothing to confer the fact that it is an organic illness. This has understandably contributed to much of the public, and to the chagrin of sufferers doctors as well, dismissing the condition as "all in the head". The weight of evidence conclusively demonstrates that CFS is not a psychological illness.
Patients, backed by knowledgeable doctors and researchers, have now decided that the time has come to put things right.
The Fair Name Campaign was created by Rick Carson, himself a patient and also founder of ProHealth, Inc which owns the largest CFS and fibromyalgia site on the web - http://www.immunesupport.com/. As well as providing huge amounts of information for patients immunesupport.com also sells high quality nutritional supplements with a share of the revenue being used to fund CFS and fibromyalgia research.
As part of the campaign The Name Change Advisory Board (NCAB) was created. The NCAB is made up of CFS experts including Dr. Lucinda Bateman, Dr. Paul Cheney, and Dr. Charles Lapp and was charged with advising the campaign on the best name to move forward with from a medical perspective. The NCAB put forward their recommendation that Chronic Fatigue Syndrome (CFS) be renamed as ME/CFS with the ME standing for Myalgic Encephalopathy.
It now seems that the campaign is progressing faster and being more successful than expected. Following CFS and fibromyalgia awareness week on May 12 Rick reported in a newsletter this week that the campaign had entered a new phase:
"When we began the Fair Name Campaign, our intention was to have a vote on whether or not to accept the Name Change Advisory Board's recommendation of ME/CFS. However, since that time, the campaign has taken on a life of its own, as the use of ME/CFS in both the medical and patient communities is growing steadily. Therefore, we are shifting our focus, from a vote to implementation of the name that is increasingly being recognized and accepted - ME/CFS - and moving forward with the guidance of respected patient leaders."
I have certainly noticed myself how effective the campaign has been in such a short space of time. Each week I add the latest research abstracts to The Environmental Illness Resource and have noticed that a growing number of papers already use the term ME/CFS in place of Chronic Fatigue Syndrome (CFS). Since the US produces the largest amount of scientific research it has a strong influence on the rest of the world so with researchers publishing papers using ME/CFS the use of the new name is sure to spread.
This process worked in the opposite direction when the US originally adopted the CFS name over 20 years ago. Until that point other countries had been using ME but this has been progressively replaced by CFS due to the vast majority of research coming out of the US which has used this name.
Organizations have also been quick to incorporate ME into their names with for example the International Association for Chronic Fatigue Syndrome (IACFS) becoming IACFS/ME.
On a personal note I am delighted that the Fair Name Campaign has been so successful. I have been ill with ME/CFS for 18 years after being diagnosed at the age of 11. Being English I was originally diagnosed with ME but have clearly seen a shift towards the use of CFS by both doctors and the public. I have no doubt that this hasn't helped the cause of patients like myself as I've lost count of the number of times people recognise the name Chronic Fatigue Syndrome and immediately ask "So you just get tired then?" Thankfully I have learned to brush off such ignorance and try to explain the seriousness of the illness, after all it's not the individual's fault that the name gives such a false impression!
I'd like to thank Rick, the Name Change Advisory Board, and all involved with the Fair Name Campaign for their much needed efforts.
What are your thoughts on the name change? Have people dismissed your illness due to it being called CFS? Are you happy with ME/CFS? Do you think it will help patients to be taken more seriously?
Please let us know!
Many of you will have seen the news this week on this site and elsewhere that seven subtypes of chronic fatigue syndrome (ME/CFS) have been catergorized based on new genetic research.
This is fascinating stuff. Not only does it give us a deeper understanding of what is going on in ME/CFS and offer the hope of diagnostic tests and treatments in the not too distant future, but it also puts another (rather large!) nail in the coffin of the idea that the disease is psychological in origin. Let's face it, this idea should have been buried years ago but its proponents (mainly psychiatrists) are a stubburn lot!
ME/CFS has always been a highly puzzling illness for researchers because despite obvious commonalities between patients, chronic fatigue being the obvious one, there are also many differences. These can be grouped into different areas of investigation:
A proportion of patients can trace the start of their illness to an acute viral illness, myself included. I developed a flu-like illness in November 1990 which would seem to clear up after a few days only to return the following week. This went on until the New Year when I realized I was no longer acutely ill but didn't feel healthy either. I was diagnosed with ME/CFS 4 months later after tests failed to turn up anything else. This pattern doesn't appear to be the same for all patients however. Some report various of factors triggering their illness such as an extremely stressful event such as the death of a loved one, divorce etc. In a sizeable number of patients the illness doesn't start suddenly at all but develops slowly over time.
Studies have often found abnormalities in levels of certain neurotransmitters such as serotonin, dopamine and noradrenaline (norepinephrine) in ME/CFS patients. The trouble is that the results are often conflicting with some patients having abnormally high levels of serotonin and others low levels for example. I personally suffer from S.A.D. as part of my illness which tends to suggest my serotonin levels may be low rather than high, during the winter months at least. Other neurological abnormalities include altered blood flow to the brain and a condition known as neurally mediated hypotension, or orthostatic intolerance, which results in a lack of blood flow to the brain, usually when standing up or when standing for long periods. This results in feeling dizzy, lightheaded, faint and wobbly and occurs because the brain fails to increase blood pressure so that enough blood reaches the brain when standing upright. Again not everyone with ME/CFS seems to suffer from this, at least not to the same degree.
A number of studies have found low levels of the stress hormones cortisol and DHEA which are produced by the adrenal glands. This could account for ME/CFS patients' inability to get going in the morning and poor tolerance for exercise and stress. The picture is not clear however as the low cortisol levels seem to be more prevalent amongst women and giving cortisol replacement treatment to those with low cortisol does not work consistently.
Studies have found various abnormalities of the immune system with some aspects being overactive and some underactive. Some types of immune cells (e.g. natural killer cells) are often low in number but no consistent picture of immune dysfunction has emerged. In addition ME/CFS patients are more likely to have allergies than the general population but not all sufferers have allergies by any means. Some studies have found autoantibodies (antibodies that attack the person's own body tissues) in patients but results have been inconsistent.
ME/CFS has significant overlap in symptoms with other poorly understood conditions. Many people with ME/CFS are also diagnosed with fibromyalgia, irritable bowel syndrome (IBS), and multiple chemical sensitivity (MCS). They are much more likely to suffer from these conditions than the general population. Again this is not always the case and ME/CFS patients may have none of these other conditions.
All of these findings have lead most researchers to conclude that ME/CFS is not a single disease with a single cause but rather a group of diseases with a common base but a different expression of symptoms and biochemical abnormalties in different patients. They have thus sought to define subgroups to improve research and treatment outcomes by focusing on a single subgroup at a time.
The genetic research which has been in the news was carried out by Dr. Jonathan Kerr and colleagues could well provide the basis for accurate subgrouping. The study found seven distinct types of ME/CFS based on variations in 88 genes and the proteins which they control. The types are as follows:
Type 1 - high levels of depression and anxiety as well as poor sleep and high degrees of pain. Type 2 - severe post-exertional fatigue, joint and muscle pains. Type 3 - mildest form of the disease. Type 4 - moderate levels of body pain and sleep problems Type 5 - most severe muscle weakness and predominance of gut problems Type 6 - associated with significant fatigue Type 7 - most severe form with high levels of pain, swollen glands and headaches.
I'm sure if you suffer from ME/CFS like I do this is quite exciting news and your initial reaction is to try to figure out which type you might have. It soon becomes obvious that this isn't exactly an easy task! In my case I seem to have characteristics from across the types but don't fit into a single types very well. I certainly don't have the most severe form of fatigue that leaves some patients unable to get out of bed and I don't suffer badly with the type of severe muscle and joint pain characteristic of fibromyalgia. I do experience severe depression, anxiety, sleep disturbances, gut problems, headaches and post-exertional fatigue.
So, although this is great news and undoubtedly furthers our understanding of the disease it doesn't provide us patients with any practical benefit just yet. We'll have to wait for further research to see if blood tests can be developed to look for levels of the proteins which these 88 genes code for. We'll then have a diagnostic test to determine which type we suffer from. From there let's hope that specific treatments can be developed.
How do you feel about the types of ME/CFS outlined by this research? Do you seem to match any of them? Let us know below!
As a chronic fatigue syndrome sufferer I have come to realise just how pivotal healthy thyroid and adrenal gland function are to recovery. If your thyroid or adrenal function is below par effectively treating these issues can make a huge difference to how you feel and your ability to function.
Research has demonstrated that the function of the thyroid and its hormones in those of us with chronic fatigue syndrome and other chronic illnesses can be adversely affected by a variety of factors and through a variety of different mechanisms. Unfortunately, routine medical examinations and blood tests are woefully inadequate when it comes to detecting thyroid problems.
Standard thyroid blood tests typically only look at levels of thyroid stimulating hormone (TSH) and thyroxine (T4). T4 is actually the inactive form of thyroid hormone which has little affect on the cells. The active form known as T3 is rarely tested for. As we will see this can give an incomplete or entirely false view of how thyroid hormones are actually doing their job of regulating metabolism at the cellular level.
Currently most doctors (working from standard blood tests) only recognise two types of hypothyroidism (low thyroid function.) The first is known as 'primary hypothyroidism' and this occurs when the thyroid itself is not producing enough hormones. The second type results from a failure of the tissues which stimulate the thyroid; the hypothalamus and pituitary gland.
However, in his book 'Your Thyroid and How to Keep it Healthy' Dr. Barry Durrant-Peatfield describes how you can experience all the symptoms of hypothyroidism even if standard thyroid blood testing appears normal:
1. Conversion Failure - This is a failure of the systems which convert the inactive T4 hormone into the active T3 form. The enzyme required for this conversion needs adequate amounts of selenium to function so any degree of selenium deficiency may reduce thyroid function. Heavy metals such as mercury which those with CFS and environmental illnesses often have problems with are known to displace selenium. The process also requires other mineral cofactors such as calcium, magnesium, zinc and mangenese. Other chemical contaminants such as fluoride also prevent the conversion of T4 to T3. Unfortunately fluoride is widely added to water supplies and toothpastes so make sure to filter your water and buy fluoride-free toothpaste if you think you have thyroid issues!
2. Receptor Uptake Failure - As well as there not being enough T3 due to conversion failure there may be a problem with the hormone not working effectively when it reaches the cells. Each cell has receptors which should recognise thyroid hormones but these may become resistant so the message doesn't get through as strongly and symptoms of hypothyroidism result. Suggested reasons for this resistance include autoimmune reactions, other hormonal imbalances (e.g. adrenal fatigue), and toxicity whether from environmental toxins or those produced excessively in the body.
3. Adrenal Insufficiency - Dr. Durrant-Peatfield reports that poor adrenal function with reduced output of the hormones cortisol and DHEA can reduce thyroid function in every way; thyroid hormone production, T4>T3 conversion, and receptor uptake. Adrenal dysfunction is known to be a problem in CFS and t has been suggested that function can be reduced in otherwise healthy people by chronic stress and other factors.
Symptoms associated with hypothyroidism:
Cold hands and feet
Poor concentration and mental sluggishness
Low blood pressure/heart rate
*there are many more
My Experience with Thyroid Issues
During my teens I saw an enlightened doctor who recognised that low thyroid function was an issue in CFS. At that time I was given a trial of thyroxine. Unfortunately this didn't have any noticeable effect so we gave up on that avenue of treatment (mainly because I wasn't a very willing patient at that time!). More recently however after a lot of research on the issue I decided that it was probably worth having a trial of T3 medication. This was effective. VERY effective. Even at very low doses it was like a switch had been flipped in my head. I had suffered terribly from lethargy, apathy, depression, fatigue, and general sluggishness. The T3 medication improved all of these drastically and made me feel like myself for the first time in years. It brought tears to my eyes as I had literally forgotten what it was like to feel like myself and feel alive. The fact that it only took a small dose probably suggests that mine was a conversion problem. Others may require larger doses to see an effect if receptor sensitivity is an issue. From my experience I would advise all those with CFS and related illnesses (including depression) or symptoms suggestive of hypothyroidism to work with a doctor who recognises the intricacies of thyroid function. Do not stop at trying thyroxine, make sure you see how you feel on T3 medication or a natural alternative such as Armour thyroid.
Low adrenal function (adrenal fatigue, adrenal exhaustion, burnout) is even more controversial than low thyroid function. Put simply the medical profession in general doesn't believe that people can be ill as a result of low output of adrenal hormones unless the adrenal glands are failing completely. This is known as Addison's Disease or adrenal insufficiency.
Research has shown however that those of us with CFS are often low in both cortisol and DHEA and that this can contribute to our symptoms. Researcher Hans Seyle also showed that the adrenal glands of rats exposed to chronic stress eventually reduce their output of these hormones and the glands themselves actually withered.
Levels of adrenal hormones can now be tested at home by taking samples of saliva throughout the day which are then posted to a lab. These tests are known as Adrenal Stress Index (ASI) tests. An ASI can reveal how much DHEA and cortisol you are producing throughout the day, indicating if corrective measures may be needed. Doctors specializing in environmental illnesses and other healthcare providers such as nutritionists may order these tests for you but you can also order them yourself. Of course you should enlist the help of a helthcare professional to interpret the results and monitor treatment.
Symptoms associated with adrenal fatigue include:
Inability to get going in the morning
Inability to cope with stress
Low blood pressure
Tendancy to get a second wind at night (becoming more alive as the day goes on)
Allergies and sensitivities
*there are many more
My Experience with Adrenal Issues
Since I had all the typical signs of adrenal problems I had an ASI carried out which revealed DHEA right on the borderline of an outright deficiency with cortisol levels that were slightly low but varied wildly throughout the day, being very high at night and low in the morning when they are supposed to rise to help you get going!
As with T3 thyroid hormones my response to treatment for my adrenal problems can only be described as spectacular. I took DHEA (again at very low doses - 10mg every other day) and within a week I was feeling a lot better. Again I felt more like myself, this time mainly because I felt so much more relaxed and free from stress. Tasks which would have filled me with dread and left me extremely tense I could now handle without a problem and even enjoy as I felt a sense of well-being and confidence. Besides this I slept soundly and felt refreshed in the morning, was able to get up much earlier, and could even handle some aerobic exercise. My blood sugar levels which had been highly erratic stabilized and the severity of my allergies was much reduced.
I had previously taken licorice supplements since they are said to help with adrenal issues by increasing the activity of cortisol. These too had a powerful effect, providing me with the energy to motivate myself to start tasks and again allowing me to get out of bed earlier. A word of warning though; increasing cortisol levels although motivating and energy boosting can actually leave you feeling even more stressed if your DHEA is too low.
A Final Point
My personal experience has taught me that DHEA acts as a counter-balance to substances which have a stimulating effect on the body including thyroid hormones and cortisol. If you don't have sufficient DHEA then taking thyroid hormones, cortisol, or any stimulant (caffeine, nicotine, sugar etc) will likely leave you feeling stressed and overstimulated very easily. Dr. Durrant-Peatfield suggests that adrenal problems must be addressed if thyroid treatment is to be successful. My own experience tells me that this is indeed the case.
My aim with this blog was to tell you a bit about the things that can go wrong with the thyroid and adrenal systems which may very well be missed by most doctors but can have a profound affect on your health and how you feel. When you work with a healthcare practitioner who is knowledgeable in these issues the results of treatment can be dramatic. If you sufgfer from CFS or related chronic illness and haven't looked into your thyroid and adrenal function it is something that is well worth doing and could go a long way to getting you back on your feet!
The story of a contestant on the hit show Who Wants to be a Millionaire? grabbed my attention this week. It's an amazing story that just shows how quickly things can change in life which is something those of us dealing with ME/CFS and other chronic illnesses always need to keep in mind!
Thirty-three year old Marie Chesterfield from Brighton, England suffers from myalgic encephalomyelitis
New research to be published in the April issue of the Journal of Human Nutrition and Dietetics relating to dietary intervention in Chronic Fatigue Syndrome had me very frustrated this week. The research was supposedly an attempt to determine if an anti-Candida diet is beneficial in those with Chronic Fatigue Syndrome.
The researchers note that Candida has been linked to CFS in many books and anecdotal reports but little scientific evidence exists for such a link. I couldn't agree more, good quality research that really gets to the bottom of this issue is required, unfortunately the research in question here does nothing to further scientific knowledge and to my mind is of very little value.
As a chronic fatigue sufferer who has gone through the process of applying for disability benefits I can say without a shadow of a doubt.....the assessment procedures are not set up for conditions such as CFS. I'm sure most CFS patients out there will have come to the same conclusion.
Here in the UK (and I'm sure it's similar in other countries) to apply for any benefits based on you being sick or disabled you must first complete the
The antiviral drug Ampligen has supposedly been the big breakthrough in chronic fatigue syndrome (CFS) treatment for 20 years. The long wait for patients looks set to continue and the reason ironically seems to be that clinical trial data submitted by Hemispherx Biopharma Inc., the drugs maker, is too old and doesn't meet new criteria.
Hemispherx submitted a New Drug Application (
I came across a story the other day about the Welsh professional golfer Ian Woosnam and his battle with chronic fatigue syndrome (CFS). Woosnam hasn't played a European Tour event since July after being diagnosed with CFS, but plans to launch his senior golf career next March at the Barbados Open.
This story made me curious to find out about other celebrities who are suffering from chronic
The third edition of Dr. Joseph Teitelbaum's bestselling book 'From Fatigued to Fantastic!' was released recently. Dr. Teitelbaum is one of the best known chronic catigue syndrome and fibromyalgia specialists and this title is basically all of his knowledge and experience
My ASI results indicated that my cortisol