A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors
Blog posts tagged in chronic fatigue syndrome
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...
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....
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...
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 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...
Apologies to readers who might have already read about this story. The UK Mail on Sunday (February 13th 2011) carries an article by Esther Rantzen on her daughter who has ME. UK viewers will know Esther from such classic TV programmes such as That's Life. In recent years she has discussed ME as a consequence of her daughter's diagnosis. The article in the Mail regarding a possible link between ingestion of gluten and ME/CFS can be viewed here:
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...
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...
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...
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...
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...
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....
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...
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...
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...
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...
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.
Read the forum thread on phospholipid exchange therapy
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...
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...
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...
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...
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...
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...
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...
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:
Illness OnsetA proportion of patients can trace the start...
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...
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
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
Around 7 years ago I had a test done called the Adrenal Stress Index (ASI). This test measures levels of the adrenal hormones cortisol and DHEA in saliva samples taken at various points throughout the day. Multiple samples are needed to get an accurate picture of cortisol levels as they vary considerably during the day in everyone.
My ASI results indicated that my cortisol