EiR Blog

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...

After being chronically ill for 20 years, having been diagnosed with chronic fatigue syndrome (ME/CFS) at the young age of 11, I have grown increasingly interested in psychology and particularly the traits required to survive an illness that robs sufferers of so much (what I would give to be able to just go for a run). My ill health has also included multiple chemical sensitivity (MCS), seasonal affective disorder (S.A.D.), and adrenal fatigue, which are all terrible things to deal with in themselves and have forced me to draw on every last bit of inner strength I could muster to keep going despite a distinct lack of enjoyment in life. Rather than crushing my spirit however, these trials and tribulations that have shaped my life, have actually strengthened my resolve, given me greater confidence in myself and my abilities, and changed my outlook on life for the better. When one...

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...

by  Carolyn Cooper, MPH, RN Multiple Chemical Sensitivity awareness is one of the health observances for the month of May.  MCS is also variously known as Environmental Illness, Idiopathic Environmental Intolerance, and 20th Century Disease.  Over the course of the last 8 years I have become acquainted with a number of individuals who are afflicted with this often misunderstood condition.  MCS causes many of those who are severely affected to isolate themselves in order to take refuge from the synthetic fragrances and fumes that are ubiquitous in industrialized nations.  My interest in MCS resulted from experience caring for one of my hospital patients who is severely afflicted.  (Read about my patient's experience with MCS in my blog post from May of 2009).  Recognizing the lack of scholarly published literature to inform health care providers about the specific needs of the chemically sensitive in the health care setting, I eventually wrote a...

 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...

 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...

 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...

 Browsing through the online news looking for stories about multiple chemical sensitivity (MCS) yesterday, I came across a review of a play which features a main character with the illness. The review features in the The Record, a local newspaper serving Troy and surrounding areas in New York state. The play is titled 'Sick' and features a 17-year- old character called Davey who suffers from MCS. Davey's family live in a New York apartment and protect him by turning their home into a chemical-free zone - something anyone who suffers from MCS knows is a necessity. Reading the review got me thinking about the exposure MCS gets in the media and how it is portrayed. It seems to me that there is a steady increase in awareness of the condition and it is beecoming more and more a part of the public consciousness. Just a few short decades ago virtually...

Following on from my previous blog about a NY Times article that didn't live up to its promise of offering a safe way to combat mosquitos I wanted to provide some genuine advice on non-toxic insect repellants and techniques for avoiding the troublesome pests. After a quick internet search I came across a fantastic article on About.com written by Anne Marie Helmenstine, Ph.D., the site's chemistry guide. Helmenstine explains that mosquitos use complex mechanisms to detect hosts so the most effective way escape becoming such a host is to avoid things that attract them and also use truly non-toxic repellants at the same time.   What do Mosquitos Find Attractive? Carbon Dioxide - As mentioned in my previous blog, mosquitos find hosts by following their trail of exhaled carbon dioxide (CO2). You give off more CO2 when you are hot or have been exercising so either avoid being outside or...

I thought for my main blog entry this week I'd discuss a subject that has for the past 10 years or so had a major impact on my ability to cope with daily life and plan for events in the future - the daily and seasonal fluctuations in the appearance and severity of my symptoms of chronic fatigue syndrome, environmental illness, and related conditions. I'll also talk about what I have done to adapt and minimise their impact.   Daily Fluctuations First I ought to explain that the body varies its biological processes such as hormone production throughout the day and night to allow for periods of activity and rest (i.e sleep) and this is known as the circadian rhythm. For example in the morning secretion of the adrenal hormone cortisol increases, as does activity of neurotransmitters such as serotonin, and this makes us feel awake and full of energy so we're prepared to...

This week I thought I'd try to get all you multiple chemical sensitivity (MCS) sufferers involved and conduct a kind of survey so we can see the most common symptoms of the condition and how it develops in different people. I hope this is an idea that interests you and you'll get involved by leaving comments below. First of all I'd like to discuss my personal feeling on what MCS actually is. There has been a lot of confusion among both doctors and patients about whether MCS is an allergic condition or a neurological condition. My personal feeling through experience of the illness and reveiwing the available scientific literature is that it is most definitely a neurological disease caused by neurotoxicity (toxic damage to the brain).  A leading theory which I believe to be along the right lines involves a process called 'limbic sensitization'. The idea is that either acute or chronic...

Hi everyone, my name is Jason and I am a multiple chemical sensitivity (MCS) sufferer. Like anyone who has MCS I have had a hard time convincing anyone (friends, family, doctors) that I am actually sick. Recently I managed to get a SPECT scan of my brain carried out which has given me visible proof that I am actually sick. I thought many of you here would be interested to see the scans so wanted to post this blog.  Just so you understand the scan more clearly- it is the scan and function of 'my' brain overlapping the 'Normal' healthy functioning image of an adult brain.  I try to point out the graphing system used on the side with my finger.  If my scan was functioning within the normal range there wouldn't be any color deviation away from the color 'gray'.  Where it is gray colored is where my brain's functioning (cerebral blood flow) is...

What is body odor? What makes someone smell clean? In our society, we equate a perfume-y, fragranced smell with clean and normal body odor as dirty. My boyfriend has not washed with soap in five years. He was nervous when we first met that I would think he smelled bad. On the contrary, I actually really loved his smell. That's because his diet is pure and he has minimal exposure to toxins in personal care and other types of products. So there is no bad smelly stuff to sweat out. Just normal human smell. I much prefer it to nasty chemicals in fragrances that are just masking over dirt. If you smell bad enough to want to use perfume, take a good look at your diet and lifestyle and start cleaning those up before you reach for the carcinogenic chemicals in fragranced products.   reposted from http://planetthrive.com/members/blog/earthwalker ...

This is a post from my Planet Thrive blog from last month. Thought it would be good to share here so people can see how others are living with MCS.   Not sure how my life came to this. I have 3 outfits, all thin and worn, ripped and stain, unwashed for 4 months, not warm enough for winter. I have no bedding except 1 thin and narrow shawl that does very little to keep me warm. I sleep on a 1" thick chair mat on the cold tiled floor. My pillowcase is stained brown from not being washed for months and months. I don't tolerate the water in my home. I have to go to a friend's house to get drinking water, 1 gallon a day. I get filtered water from the local stinky supermarket, then heat it on a hot plate and wash my hair in the tub...

If you suffer from multiple chemical sensitivity (MCS), sick building syndrome, allergies, asthma, or other respiratory problems you may own or be thinking of buying an air purifier to purify the air in your home and relieve your symptoms. Modern air purifiers are certainly extremely efficient at removing troublesome chemicals from the air with their HEPA, carbon and zeolite filters. They do have their drawbacks however. They can be expensive to buy, the filters need replacing periodically, they can be noisy, and they add to your electricity bills. There is an alternative however that many of you may not have considered......house plants! That's right, research has demonstrated that certain plants are highly effective natural air purifiers. Not only that but they are cheaper to buy than their manmade counterparts, don't require filter changes, are silent, use no electricity, are much more attractive, and may even contribute to our happiness! One...

Those of us severely affected by multiple chemical sensitivity (MCS) often have no option but to resort to wearing face masks containing carbon filters to protect us from volatile organic compounds (VOCs) in the form of perfume, fragranced products, tobacco smoke, diesel fumes and many other sources. For me wearing such a mask was both a blessing and a curse. A blessing because for the first time since developing severe chemical sensitivities I could once again be around people and venture out from the safe haven of my chemical-free home. A curse because clearly, a carbon filter face mask is not the height of fashion and draws much unwanted attention when out in public. A hard thing to deal with when you are a touch on the shy and self-concious side as I am!   Me in the summer of 2003 in Bishop Monkton, near Harrogate, England. When I first developed...

A study that hit the news this past week has caused a bit of a stir in the fragrance industry. Researcher Anne C. Steinemann, PhD, a professor of civil and environmental engineering and public affairs at the University of Washington, Seattle, revealed that common fragranced products such as laundry detergent/fabric softeners and air fresheners emit dozens of different chemicals, some of which are regulated as toxic or hazardous under US law. Not only that but NONE of these chemicals appear on the labels of such products so consumers are completely in the dark about the toxins they may be filling their homes with. Under US law (and in many other countries outside Europe) there is no requirement for manufacturers of fragranced products to list all of the chemicals in a particular product, even if an ingredient if officially classed as hazardous. All manufacturers need to do in such cases is put a warning label on the...

There was a time not so long ago when nobody had even heard of Multiple Chemical Sensitivity (MCS). In fact, when I first developed the condition only 7 years ago I didn't meet anybody who had heard of it, apart from others who were suffering like I was. This lack of awareness only adds to the considerable suffering and feelings of isolation that come with being affected by MCS.  As any MCS sufferer will tell you it's one thing to have a disabling illness and quite another to have nobody believe you have a disabling illness! Thankfully awareness of MCS now seems to be spreading thanks to a steady stream of coverage in the mainstream media. To stay on top of things I receive daily email updates from the Google News website (Google Alerts) on all topics relating to what we cover here at The Environmental Illness Resource. Not long ago there were rarely any...

I realised the other day that I had never really written about my experiences with multiple chemical sensitivity (MCS). So I thought today I'd give a (relatively!) brief account of my journey through developing MCS, living with it at its most severe, to the point where I am now largely free from symptoms, save for the odd twitch. I had been ill since the age of 11 and was diagnosed with ME/CFS at age 12. Having read a lot about my illness during my late teens I was aware that a large number of ME/CFS patients also suffer from allergies and MCS. I had developed hayfever a few years after being diagnosed with ME/CFS so thought it was a very real possibility that I could develop chemical sensitivities at some point. My fears were realised in late 2002 when I was 23 years old. Ironically, I believe the straw that broke...

Hi All, I recently had a conversation with my E/I doctor that made me realize that many MCS/EI people are sick all the time for a very simple reason; they don't have a safe place to sleep. He was telling me that I was lucky because I did have periods of time where I did feel OK. I told him what I am going to tell you now. I got sick in November of 1991. My primary concern over the years since then was to find and maintain a safe place to sleep. My day is about something like walking through a minefield (can you relate?); trying to avoid the perfumes, cells phones, fabric softeners, computers, TV's, etc. that are everywhere. This is not an easy task. My x-wife and I were married for nine years but lived together for only four. This is probably why we stayed together so...

MICAGO stands for MCS International Coalition of Allied Groups

To those of us who have been affected by multiple chemical sensitivity (MCS) and related conditions, fragranced products are a major menace. I feel those products rather amusingly called 'air fresheners' deserve special attention because of the way they are advertised to the public.

Manufacturers of 'air fresheners' make out that these products will make the air in our homes

As a multiple chemical sensitivity and allergy sufferer myself I can safely say that life hasn't exactly been a walk in the park. This is a sentiment with which I'm sure my fellow "canaries" would agree! However, I am also able to appreciate that things could be much worse for me than they are in 2007. If I had developed MCS in the 1980's for example, I'm sure my life

I had intended to write on a completely different subject today, something much more seasonal and light-hearted. Unfortunately I found myself on a website reading a rather heated debate between multiple chemical sensitivity (MCS) sufferers and those who believe (or portain to believe) that MCS is a psychiatric disorder. As a result I felt compelled to write about MCS skeptics and analyse

Earlier this week as I was browsing through news updates in my email inbox I came across a story which put a big smile on my face. It seemed that a member of the US House of Representatives was taking a stand against a medical board who were staging a witch hunt for doctors who dare to treat people suffering from multiple chemical sensitivity (MCS).

As someone who has suffered from severe

Yesterday I reported on a group of students at Stanislaus State College, California, who are campaigning for a campus ban on fragrances. That story can be read here:

Student Group Pushes for Fragrance Ban on College Campus

As I mentioned in that story,

After more than 5 months of solid work I am delighted to welcome you to the new version of The Environmental Illness Resource!

When I decided it was time for a new site I really didn't appreciate the work it would involve. The original site which I started in 2004 had grown to a total of 1200 pages which all had to be copy and pasted to the new site once I'd got the design and database