[POLL] Is ME primarily an environmental illness?

[Milo]

First i need to say i am not from Ontario, and my care will not being affected by saying what I say. Patients with ME in Ontario are horribly served. There is only one medical-based clinic for the most populated area in Canada, and just a few doctors seeing patients from that clinic. The waitlist is measured in years.

While i am not in a position to say exactly what is happening over there, the we site they have is very telling that self-management and environmental concerns and stress reductions are the priority over there. (i am reposting the link to the clinic for convenience)

When I speak up about ME being framed as an environmental illness. Some in Ontario may be worried that criticisms like that may put the whole program in jeopardy, as some find the program useful in managing their symptoms and seeing a doctor who is sympathetic to patients wanting a more natural approach to their disease. Providing input about the report was actually requested in light of the upcoming Montreal conference where the report will be discussed amongst patients, authors of the report and decision makers.

However such program being the only program in Ontario is not likely being strategic here. Is there a research program? Do these doctors attend and participate in international ME conferences? The problem is that their interest seems to be in the environemnt and environmental causes such as mold and chemical exposures as it relates to diseases that have no biomarkers. They would not be dealing with folks who have actually diseases directly caused by organophosphates or by toxic chemicals.

At this point, it remains my opinion that continuing to frame ME or FM and even MCS as ‘environmental illnesses’ perpetuates the harm, neglect and the stigma in health care and in society.

In the 20 years this clinic has existed, there has been no progression, no innovation, no growth, no improvement and the quality of life of patients in Ontario has not been made better, no significant funding.

No other clinic from around the world recognizes ME as being an environmental illness. Our own experts the Klimas, the Peterson, the Bateman out there would not say this is primarily an environmental illness. Even if you are intolerant to many food or are allergic to perfume, it still does not mean it’s an enviromental illness. And to e very fair, when we wonder which medical specialty should embrace this disease, these doctors would not be able to coin one medical specialty right now, because we still do not know enough about what is the cause. But i am also very sure that none of these experts would say that it should be parked in ‘environmental medicine’. It is a dead end, go nowhere field.

 

[Gingergrrl]

However mold illness is not ME.

I didn't mean to imply that mold illness equals ME versus, in my personal opinion, that mold/mycotoxins is one potential trigger of ME. It is certainly not a trigger in every case but I believe it is a trigger in some cases.

 

[brf]

I am rather sceptical. What exactly are the years of hard work? As far as I can see the material in the report is obvious - anyone could say it. And I see no reason to think it will lead to any concrete action since people have been saying it for years.

The recommendations may seem simplistic and obvious but it's still more than what we've got.
It was only 1 1/2 years ago that a federal grant was rejected denying ME was a real disease.

 

[Barry]

I'd be very surprised if ME was all down to the environment, yet I would not be at all surprised if environmental issues are a contributory factor for some PwME. e.g. Pesticides, etc? So not sure for me. Not sure anyone knows enough to be certain either way. Depends if your question really is:

Is ME an entirely environmental illness? Or ... [In which case I would probably have answered 'No']

Could ME be an illness in some cases partially contributed to by environmental issues? [Which I have answered 'Not sure' to]

 

[ScottTriGuy]

Calling ME an environmental illness is a category mistake and unlikely to be overall helpful.

However, currently it is helpful in that a Task Force has been created and mostly helpful recommendations have been made and it does the give the community a point of leverage.

We can't throw out the baby with the bath water. We must work to change the water - and respectfully challenging Task Force Chair Roy Copes to clarify and justify at the pre-conference patient meeting would seem appropo.

 

[Milo]

Calling ME an environmental illness is a category mistake and unlikely to be overall helpful.

However, currently it is helpful in that a Task Force has been created and mostly helpful recommendations have been made and it does the give the community a point of leverage.

We can't throw out the baby with the bath water. We must work to change the water - and respectfully challenging Task Force Chair Roy Copes to clarify and justify at the pre-conference patient meeting would seem appropo.

Certainly i was not suggesting to drain the baby too. I was suggesting that continuing to accept unhelpful concepts such as ME being an environmental illness is just as unhelpful as suggesting that ME is a psyciatric illness.

While folks may have appreciated the care they may have received at that particular clinic, it remains that the label remains and the disease gets lumped with others, and the list of medical treatments offered there is very, very short, unless you qualify ‘eating organic food’ as medical intervention.

And by the way i could ask couple of questions at this week’s webinar, and the author of this task force did not feel that lumping diseases in a unifying ‘environmentally-linked illness was a problem and did not feel it could be stigmatizing for the patients. This is a problem.

 

[Mij]

Dr. Hyde is stating Here that exposure to toxic chemicals and viral infection are not obvious distinctions in brain injury.

 

[Milo]

Dr. Hyde is stating Here that exposure to toxic chemicals and viral infection are not obvious distinctions in brain injury.

Does that make ME and environmental illness and does it warrant ME to be labeled as such? This label at least in Canada, allows the Ontario government from segregating patients into a tiny program called environmental illness, and yet this program does not accept patient with diseases which are clearly triggered by environment (lead poisoning, asthma, asbestosis, mesothelioma, etc.). Take fibromyalgia, which is also labelled as environmental illness. Many people get FM after a car accident. One could argue that a car accident occurs in the environment. But then how about sports concussions? Is it an environmental illness?

This label as used in Ontario is harmful. It allows herding patients into a program and prevents them access to further medical care.

An Overview of Environmental Illness (EI)

Environmental Illness is a term used to describe illness in which environmental triggers play a significant role in producing symptoms, and the illness itself. People suffering from environmental illness may have allergies, be sensitive to certain chemicals, as in multiple chemical sensitivity (MCS) or be unable to work in an office or other enclosed environment without becoming ill, which is known as sick building syndrome.

Some people who suffer from environmental illness become sensitive to almost everything in their environment. They may be allergic to pollen, mold and animal dander, be made sick by a large number of common foods through immediate food allergies and delayed food sensitivities, and be unable to tolerate tiny amounts of everyday chemicals in cleaning and cosmetic products. These people are often referred to as 'universal reactors' because their bodies react to so many environmental triggers.

Environmental illness is sometimes referred to as "universal allergy" or "20th century syndrome". Whichever name is used, universal reactors can suffer symptoms so frequently and/or severely that they must wear carbon filter face masks, or even respirators like the man in our image above, just to stay relatively well.

As yet there is no standard definition for environmental illness, as agreement has yet to be reached about what this should entail. There are many differing opinions within the medical and research communities as to the causes and mechanisms of “EI” and some refuse to acknowledge the existence of anything other than classical allergic reactions.

In the absence of an official definition, environmental illness can loosely be defined as:

“A reaction to common components of a persons environment, including chemicals, food, water and physical particles, that results in symptoms relating to multiple organ systems and a general poor state of health.”

 

[Mij]

Does that make ME and environmental illness and does it warrant ME to be labeled as such?

No.

 

[Milo]

No.

I feel compelled to say thank you.

What matters to me is not whether there is an environmental component for some of our patient population especially when it comes to MCS. What matters most to me is to stop the stigma, stop the labelling, and for all patients with ME and FM to get mainstream medicine, with a robust research program and carefully thought clinical trials. We should not be segregated into a poorly funded program that only offers education and self-management, because only very few lucky patients have escaped a world of disability and a lifetime worth of being robbed of the life they were meant to live, meaning we are all still sick and grossly underserved