EiR Blog

A Blog For Those Affected By Environmental And Invisible Illnesses Written By Fellow Survivors

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08
Aug
1
Posted by Posted on in EirBlog
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Black Mold
Multiple Chemical Sensitivity (MCS) is estimated to affect up to 15% of the population in the US and other industrialised nations (1), yet research into why people develop this hypersensitivity to chemicals is sorely lacking. Currently we have mainly animal testing and studies involving small numbers of participants diagnosed with MCS to go on. One leading theory suggests the development of a hypersensitivity to chemical stimuli in an area of the brain known as the limbic system which controls a variety of functions including emotion, behaviour, long term memory, and olfaction (our sense of smell). Animals studies have shown that both large acute exposures and low-level chronic exposures to certain organic chemicals can result in hypersensitivity of the limbic system to subsequent minute exposures to the same, or similar chemicals (2). Perhaps the most complete theory of the pathophysiology of MCS thus far has been proposed by Martin Pall, Professor...
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  • adminv15
    adminv15 says #
    Have you thought about vaccinations?
  • adminv15
    adminv15 says #
    I honestly believe this century (& maybe next) will come to be known as " The Chemical Age" & even future schoolchildren will be a
  • adminv15
    adminv15 says #
    Hi Monique and Maff and all, Certain medications such as Fluoroquinolone antibiotics can cause damage to the Cytochrome P450 syst
31
Jul
0
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Noetic Science and Holistic Health

Brain Scan
Suffering with environmental illness is a huge struggle, not only in terms of dealing with the dibilitating symptoms themselves but also the lack of healthcare provision and the way we are regarding with suspicion by doctors and even our friends and family. Finding ourselves in this situation though does have its up side...it has a way of opening our minds to possibilities we may not otherwise have considered. Like me, when you were healthy and everything was going great you probably gave little thought to how something like your diet as a whole and even specific foods could be affecting your body. Environmental illness forces us to explore all our options in the pursuit of healing and I am sure the vast majority of you have turned your attention to your diet and probably have an impressive collection of nutritional and/or supplements in your kitchen. Now, I'd like to take...
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21
Jul
2
Posted by Posted on in EirBlog
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ONE THING

Thought I would let you all know the ONE THING that has helped me with living with chronic fatigue that I learned from one of my customers/patients.  I own a small medical company that services assisted livings and nursing homes in Portland,  Oregon.  Her name is "T" and she died of terminal cancer a few years back.  I asked her one day how did she get through the day knowing she had a terrible illness.  Her response was I look forward to watching Seinfeld re- runs every night.  There are days where I have severe fatigue and that One Thing that I focus on is getting home after work and walking my black lab.  I know it sounds cheesy, but thought I would throw that out for people struggling with this illness.  Pick One Thing everyday that you enjoy and can look forward to. Scott...
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  • Juniper
    Juniper says #
    Hi Scott, Thank you for your story Its not cheesy.... I got a puppy two years ago and another one a month ago. They have been and
  • Maff
    Maff says #
    Hi Scott, many thanks for sharing that inspiring little story with us. I think you are absolutely right. I have learnt through my
18
Jul
0
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Chronic Fatigue Syndrome Guidelines for Doctors Still Exhibit Ignorance and Misinformation

ME/CFS Ribbon
In 1991 I was diagnosed with Myalgic Encephalomyelitis (M.E.) following a two day stay in hospital for a battery of tests. The diagnosis of M.E. was given by my GP and hospital specialists. It's funny then that the latest guidelines to doctors from the Royal College of General Practitioners (RCGP) here in the UK blatantly dismisses the very existence of this illness - referring to M.E. as a "colloquial" term. Rather odd when this is a true medical name which had been in use for decades, in contrast to 'chronic fatigue syndrome' or 'CFS' - the all encompassing term with which anyone suffering from a single symptom of mild chronic fatigue to what we used to know as severe M.E. is now branded. Unlike those who pull the strings at the RCGP, and despite my 20 years of illness, I can be objective and like to give credit where credit...
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  • adminv15
    adminv15 says #
    Maff, you're so clever and so awesome!
12
Jul
0
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Environmental factors steps up in autism

Tom Insel, Director of the National Institute of Mental Health (NIMH) is quoted in his recent blog entry titled 'Autism Spring' as saying about autism "The answers — and there will be answers — will no doubt merge genetic risk and environmental exposure to help us reach the far side of the complexity of ASD". Whilst to many this sentence has made sense for many years, it is indeed a 'game-changer' when the Head of the one of National Institutes of Health makes such a bold statement. One might even suggest that his words define a new era in autism research where genetics share the throne with environment rather than environment somehow being seen as the distant cousin. What might lead Dr Insel to make such bold claims? Could it be that 2011 might just be the year when the worm turns. Indeed, 2011 has witnessed several interesting findings in...
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08
Jul
0
Posted by Posted on in EirBlog
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Effective Allergen Control Strategies

Considering the fact that most people spend at least half their day confined inside their homes, it is very important to have an allergen-free environment. Allergens are unhealthy for everyone and can be particularly harsh on those suffering from respiratory ailments like asthma or emphysema. Microscopic airborne contaminants not only make it harder to breathe, they also can cause coughs, sore throats, nasal problems and watery eyes. Chances are very good that if you always feel weak and tired, allergens in your home are at least partly responsible. Homeowners can employ a number of different allergen control strategies that can help keep the air that you breathe as clean as possible. There is no such thing as 100% pure air in any house, but the following steps can certainly make a big improvement in the overall quality of the air you breathe every day. Air Filters The use of quality filters to...
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04
Jul
0
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Health Dangers of EMF Exposure: Help us Fight for Action

Mobile Phone Mast
The other day I was contacted by new EiR member Emfsafety100 about the potential dangers the electromagnetic fields (EMFs) from our modern technology, such as power lines, wireless internet and cell/mobile phones, pose to human health and also to wildlife. Emfsafety100 reported coming across the global non-profit organisation Avaaz, who have a simple democratic mission: “to close the gap between the world we have and the world most people everywhere want”. If you aren’t familiar with this organization, their campaigns typically address environmental issues, corruption and human rights. If enough people ask Avaaz to lobby the World Health Organisation to review the EMF exposure safety guidelines, they would take action. Such a campaign would immediately enlist the support of many of their 9 million-plus members and would raise public awareness of the industry influence in the EMF safety debate. I will be suggesting a campaign to have EMF safety concerns...
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25
Jun
0
Posted by Posted on in EirBlog
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Chronic Fatigue Syndrome in the Family: Same Diagnosis, Different Symptoms

My sister Lindsay and myself
As a family of four, three of us have been diagnosed with Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME). Myself, my mother and my younger sister. My mother and I were diagnosed in 1991 when I was aged 12 and she was 39. My sister became ill when she was 15/16 years old in 1998. Obviously this is has been a tragedy of indescribable proportions for us as a family. My sister and I have (so far) had our youths and young adulthood stolen and our mum was not only struck down in the prime of her life but has had to watch both of her children suffer horribly, directly as a result of CFS and also due to society's attitude towards it. That we are certainly not the only family to be in this horrible situation is certainly no comfort. I would not wish this illness on anyone....
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  • adminv15
    adminv15 says #
    I'd end up writing an essay if I fully went into this here and now, but in my family, 2 of my 3 siblings have ME. I have ME. My Mu
  • adminv15
    adminv15 says #
    Thank you for sharing this. I believe that I have CFS and am working with holistic physician. My Mom had many symptoms that you de
19
Jun
0
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Causes Of Sleep Problems You May Not Have Considered If You Have Environmental Illnesses

Woman with sleep problems
Sleep problems are common among the general population but particularly so among those suffering from 'environmental', or 'invisible', illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FMS) and multiple chemical sensitivity (MCS). Everyone will be familiar with common causes of insomnia and poor sleep quality such as consumption of stimulants like caffeine (coffee, tea, soda/fizzy drinks) and psychological factors such as work or relationship stresses. For those suffering from environmental illnesses there may be other less obvious contributors to sleep problems, however.   Hypoglycaemia Hypoglycaemia, or low blood sugar, is frequantly experienced by those suffering from environmental illnesses and is exacerbated by a diet that contains significant amounts of foods containing sugar or refined carbohydrates e.g. candy/sweets, chocolate, white bread, white pasta, white rice, baked goods, fast food. When levels of blood sugar (glucose) drop too low or too rapidly it is the brain that is affected first since it...
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20
May
2
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Albert Einstein
Albert Einstein is my kind of guy. Although undeniably one of the greatest scientists who ever lived, he did not see the world simply through the narrow focus of physics. Although his views on religion and the existence of God are far from clear...due in no small part to his (I suspect deliberately) ambiguous comments on these subjects, he appears to have had a spiritual side and despite his great knowledge and understanding of the workings of the universe, he maintained childlike wonderment at that which we call reality. Einstein famously said "Science without religion is lame, religion without science is blind". Although open to interpretation, my take on what he was saying is that without the ability to see scientific findings in the context of a greater whole those findings serve little purpose and do nothing to furthering our understanding of reality and of the human experience. Equally, to...
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  • Maff
    Maff says #
    No problem Tracy, I'm glad you found this blog post of interest. I totally agree that this subject could form the basis of a resea
  • Tracy Mac
    Tracy Mac says #
    Thanks for this Maff. Only today I was wondering what sustains the people who suffer this journey. It is a research thesis in itse
11
May
0
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Salt water as effective as antibacterial wipes

Bacteria
I stumbled across an interesting snippet in a science magazine the other day about a study conducted by researchers at the University of Alberta, Canada. The scientists had observed that hospital staff habitually give surfaces only a single quick wipe with antibacterial products in order to disinfect them. They wondered if the number of wipes was important for bugs to be successfully removed from surfaces. The main results themselves are interesting because it was found that one wipe is not enough and that in fact, three wipes is optimal to properly disinfect surfaces and equipment. What is also interesting however, particularly to those of us affected by environmental illnesses, is the finding that if wiping a surface three times a simple saline solution (salt water) is as effective at removing nasty bugs as the antibacterial wipes, sanitizers and other products impregnated with chemical disinfectants such as triclosan. These products have...
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09
May
0
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Epidemiology of autism - its been a busy few days

One of the 'hot' topics of autism research is the question of 'how many people present with an autism spectrum condition'? I don't have the answer by the way, but there are a few recent papers which seem to be pointing at a few interesting figures. Indeed the last week or so has been an interesting time for those with an interest in the epidemiology of autism. First there was the findings from a UK study looking at the prevalence of autism spectrum conditions in an adult population (16 years +). The paper abstract can be viewed here but the paper summary: (1) an initial autism traits screening questionnaire was completed by nearly 7,500 participants; (2) 618 participants were invited for a more detailed follow-up interview; (3) the weighted prevalence of autism spectrum disorder (ASD) in adults was estimated to be 9.8 per 1,000 (approaching 1% of the population); (4) none of those diagnosed with an ASD...
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05
May
0
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Lactose intolerance and autism

Autism seems constantly to be in the news. This week is no exception following the publication of a paper suggestive that the prevalence of adults with autism is hovering around the 1% mark - similar to that suggested for children. Whilst such work gathers quite a lot of media headline coverage, other pieces of research seem to quietly pass by with hardly a thought or mention. One such study is this titled: 'Intestinal disaccharidase activity in patients with autism: effect of age, gender and intestinal inflammation' published in Autism. http://aut.sagepub.com/content/early/2011/03/07/1362361310369142.abstract The paper by Tim Buie and colleagues from Harvard Medical School is an interesting one. Buie has some interest in autism given his Chairing role in the American Academy of Pediatrics (AAP) position paper on gastrointestinal factors associated with autism last year. The recent paper from his team makes for some pretty interesting reading, not least with the suggestion that 58%...
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08
Apr
6
Posted by Posted on in EirBlog
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Close up eye in black and white
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...
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  • adminv15
    adminv15 says #
    I am the drunk with a grumpy face that can't remember what she was trying to say. Never had bags under my eyes but people say my c
  • Maff
    Maff says #
    You can still pull off some good moves on the dancefloor with the slow and gingerly approach tori Thanks Airy, I'm glad you like
  • Airy
    Airy says #
    Wow Maff, Great list. I so relate to all of these. I also sometimes forget things that I've known for years like passwords or a
28
Mar
3
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Faecal Transplants and Human Probiotic Infusions (HPI): Mainstream Media Attention

Most people suffering from environmental illnesses experience gastrointestinal (GI) symptoms of some kind, or show other signs that something is not quite right in the gut. Perhaps tests such as a comprehensive digestive stool analysis (CDSA), or equivalent, reveal an imbalance in the normal balance of bacteria, yeast, and other microbes that is essential for overall health. Research has revealed pathological changes in the composition of the gut flora (gut dysbiosis) in irritable bowel syndrome (IBS), chronic fatigue syndrome (ME/CFS), fibromyalgia, and autism...and this is a relatively new area of study so this may only be the tip of the iceberg. The most common (and most widely accepted) finding has been the presence of small intestinal bacterial overgrowth (SIBO) in IBS, ME/CFS and fibromyalgia. Healthy individuals have very little bacterial growth in their small intestines (most gut microbes reside in the colon) - SIBO is the presence of large numbers...
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  • Maff
    Maff says #
    Hi Mario, HPI tends to be used as a treatment of last resort. In C. difficile infections it has been remarkably successful when t
  • adminv15
    adminv15 says #
    Maff l was diagnosticated with Blastocystis Hominis trof ozoitos. Aparently is resistant to Fragyl. Do you know if is tratable wi
  • Maff
    Maff says #
    Hi Mario, No problem. Good to hear that the combination of colostrum and probiotics is helping you feel better. Unfortunately I a
27
Mar
4
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Adrenal Stress Index (ASI) Test Results + Restoration Plan

Adrenal Stress Index (ASI) Test Results + Restoration Plan
Posting the Adrenal Stress Index (ASI) Test results received from Diagnos-Techs, Inc. Note the images 4 and 5, which provide a great restoration plan approach to resolving the adrenal deficiencies found in the test. Hoping this may be helpful for folks out there that have seen similar results, but are unsure how to proceed.          

 

Adrenal Stress Index (ASI) Test Results + Restoration PlanDynamic Neural Retraining Program (DNRS)

 

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Tagged in: adrenal CFS DHEA ME Test
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  • Maff
    Maff says #
    Thanks for posting the great info. Glad you are having good success with your treatment, particularly with restoring a normal circ
  • TheStache
    TheStache says #
    I have seen success following the suggestions, specifically those listed on the last page: 1a) Optimize DHEA/cortisol balance In
  • susiecax
    susiecax says #
    Wow this was helpful I'm in total adrenal insufficiency Anybody had success with the suggested supplements?
27
Mar
0
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New Study on Tourette's and the Brain: Greater, Not Lesser, Motor Control

care2.com posted by: Kristina Chew Tourette's Syndrome is a neurological disordered characterized by 'repetitive, stereotyped, involuntary movements and vocalizations called tics,' according to the National Institutes of Health (NIH). While these movements might suggest that those with the disorder have less cognitive control over their movements, a new study published in Cell Biology suggests the opposite: http://www.care2.com/causes/health-policy/blog/new-study-on-tourettes-and-the-brain/...
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26
Mar
0
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Forward ME Group minutes: Meeting held at the House of Lords on March 1st (UK)

MAY BE REPOSTEDMinutes can be accessed on the Forward ME Group website:http://www.forward-me.org.uk/1st march 2011.htmTOPICS DISCUSSED:NHS Commissioning and ME/CFS Service ModelsChild Protection issues and use of Mental Capacity ActDWP benefitsResearch, including ME/CFS biobankNICE guideline reviewENDS   Charles Shepherd - MEA...
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25
Mar
0
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Policy on Lyme Disease and Tick-Borne Infections: A Community Agenda

Policy on Lyme Disease and Tick-Borne Infections: A Community Agenda
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...
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  • adminv15
    adminv15 says #
    “Unnecessary risks are being taken by patients seeking the liberation treatment.” says Dr. Avneesh Gupte of the CCSVI Clinic. “It
22
Mar
0
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Cognitive behavioural therapy not harmful in chronic fatigue (Irish Medical Times, 18 March 2011)

PERMISSION TO FORWARD, USE IN NEWSLETTERS AND RE POST ON FACEBOOK PAGES To read a letter from Dr John Greensmith click http://www.mefreeforall.org/index.php?id=2696#c10331 Any letters in response should be sent to e-mail address This email address is being protected from spambots. You need JavaScript enabled to view it. We have introduced a new system of inviting co-signatories for letters by signing up to a petition. If you wish to co-sign, click on the short link below. Or you may prefer to send your own e-mail to the letters editor or add a comment below the news item. The more of us who do, the better the chance of at least one being published. Cheers John This email address is being protected from spambots. You need JavaScript enabled to view it. Dr John H Greensmith http://www.mefreeforall.org/

 

Cognitive behavioural therapy not harmful in chronic fatigue (Irish Medical Times, 18 March 2011)Dynamic Neural Retraining Program (DNRS)

 

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