[POLL] Is ME primarily an environmental illness?

[Milo]

There is a report in the making in Ontario about ‘environmentally-linked’ diseases for which they only include ME, Fibromyalgia and environmental sensitivity and multiple-chemical sensitivities.

So I am polling the members here as of whether you believe ME is primarily an environmental illness.

Please discuss and answer the poll.

 

[Mij]

In Dr. Byron Hyde's book he has referred to toxic gas exposure as "Secondary M.E".

It was discussed Here

 

[Londinium]

I think you'll need to define what you mean by environmental illness.

 

[Milo]

I think you'll need to define what you mean by environmental illness.

i have remained broad because the proponents of this terminology are not being so precise about what environmental illness constitutes other than the strong desire to call me, fm and mcs as being environmental illness or environmentally-linked illness.

The same group is not willing to actually include lyme disease in that group “because these people are being treated differently.”

So think about the question broadly.

 

[Gingergrrl]

I think environmental triggers like toxic black mold, certain pesticides/sheep dip, vaccines, etc, can be the trigger of ME/CFS in certain cases just as viruses and pathogens can be the trigger in other cases. That is my own opinion which of course I cannot prove or disprove.

 

[Invisible Woman]

I think it can be. I know some people who developed it after exposure to organophosphates. I believe the Countess of Mar became involved because of this.

I'm not sure how to answer the poll. I think ME may, in some cases, be triggered by environmental toxins. I don't necessarily think all cases are triggered in this way though.

 

[Mij]

Environmental toxins might be the second 'punch'. I think vaccines might have been my second punch soon after the viral infection.

 

[Snowdrop]

Is ME an environmental illness. I don't know. Can it be triggered by an environmental stimulus -- I think it can. I expect that even multiple triggers might be a factor for some.

I don't have an issue with ME under the rubric of EI in Ontario so long as it is seen as physical disease requiring appropriate medical treatment.

ETA: It seems to me that here in Ontario it has followed this path just for extraneous reasons. And I've hesitated bringing it up not wanting to be vague and having a crappy memory but it seems to me that it's a function of what people get hired in our research institutes and what their interests and expertise lead them to look at.

I think it just happens that there was interest and expertise there and ME having no home got subsumed into this particular pigeon hole. I find this better at least than either psych or neurology.

 

[MeSci]

I think that it's pretty evenly spread across the world, isn't it? So I don't think it's generally environmental, but maybe it can be in some cases.

 

[dannybex]

I think it can be. I know some people who developed it after exposure to organophosphates. I believe the Countess of Mar became involved because of this.

I'm not sure how to answer the poll. I think ME may, in some cases, be triggered by environmental toxins. I don't necessarily think all cases are triggered in this way though.

I agree. It's not a 'yes' or 'no' question. If the poll had a fourth choice, "Do environmental factors play a role in some cases?", I would answer yes.

 

[Webdog]

I think sometimes ME/CFS is partially an environmental illness. But no, I don’t think ME/CFS is primarily an environmental illness.

 

[MsUnderstood]

Based on my experience, I don't believe ME is "primarily" an environmental illness. However, exposure to environmental toxins (natural and man-made) played a role in my illness onset both as a pre-teen (from which I recovered) and as an adult.

In the first instance, I became ill one month after moving into a new "manufactured" home full of off-gassing toxic building products, and starting the school year in a moldy old building. Although I was removed from the school, my home environment didn't change -- yet, I recovered.

Twenty years later, my onset was viral, but I worsened with chemical exposure from similar building products during an office renovation one year later. At that time, I rapidly worsened from "mild" to "severe". Despite living in a toxin-free home for more than 20 years, I have not recovered.

I'd prefer to view ME as a neuro-immune disease, but with a high probability of co-morbid environmental illness (multiple chemical sensitivity).

 

[Peter T]

In this context is the suggestion that ME is caused by environmental factors, triggered by environmental factors or exacerbated by them?

Presumably until we understand the causal mechanisms underlying ME we can not begin to answer this question.

Personally I don't believe that my ME is caused by external environmental factors as its onset was contiguous with an acute episode of glandular fever (Epstein Barr), though I understand there may be multiple causes and recognise that some people believe the main cause of their ME is environmental, eg mould.

However, my symptoms can be triggered by environmental factors, such as getting too cold, eating gluten or any form of stress physical, pechological or emotional. So I can be in relative remission but environmental factors can trigger a relapse.

This also raises the question as to how you could distinguish an initial cause and a subsequent trigger. For example the theory that an acute infection triggers a particular gene expression that then could result in symptoms being triggered by other factors.

Perhaps the most confusing aspect in this context is PEM. 'Doing too much' triggers or exacerbates symptoms, so for some people if they are able to manage their activity levels they are able to manage their symptoms too. For me it is external factors that most commonly force me to 'do too much', financial, organisational or family events. Do these count as environmental, things in my environment causing my PEM? However, more recently as my condition has worsened the level of activity triggering PEM has dramatically reduced and basic activities of daily living can trigger it.

Also for me ongoing symptoms can be exacerbated by environmental factors be it noise, chemicals or temperature. It is not always clear if this is a general hypersensitivity (eg light and noise) or a specific response to specific stimuli (eg gluten intolerance).

 

[Melanie]

I got ill from a girl that came to work with "something" her doctor at that time was saying was some sort of Liver disease. (She was not suppose to be at work.) I mistakenly drank from her little cup of soda she had behind the soda machine which I thought was mine. I then got sick with the worst case of Mono the doctor ever saw. I finally got over the mono and when I saw her again she was still sick and I had not seen her in months because I was home sick and so was she and when she came in to return her uniform at work she was still sick with the initial illness (whatever it was). I assume she has ME/CFS; I never saw her again and have no idea who she was as that was the only time I ever saw her which was under 2 minutes.

I'm going with viral.

 

[Melanie]

I know some people who developed it after exposure to organophosphates.

I believe this is possible but I am not completely sold on it. I think it actually is another disease but of course, that will only be proven with a biomarker to compare someone like this. I just don't think, in the end, the brain scans and blood markers Dr. Davis is working on will be the same.

I don't think Mold is an onset of ME or CFS or ME/CFS but does trigger/irritate their symptoms. I think people that have Mold onset actually have CIRS and not a form of or secondary ME/CFS. http://www.survivingmold.com/news/2014/12/what-is-cirs/

 

[mango]

I voted 'No'. To me the term "environmental illness" has the same vibes as "central senstivity" in relation to ME: a completely different meaning than it would have in any other context, any other recognised/accepted disease. The way I interpret what I've read so far, it's just another speculative BPS model meant to "manage difficult patients".

Having said that, I do believe that our bodies' ability to handle various toxins etc is impaired due to ME, and I think it's possible that toxic exposure etc could potentially trigger ME in the same way that infections, physical trauma etc can. So, from this particular point of view I would probably agree that environmental triggers can play a significant role in our disease (causing symptom exacerbation, for example), which I guess -- according to some people/definitions -- would be the same as saying that ME is an environmental illness?

So, it completely depends on what "environmental illness" means to the person who is asking the question.

 

[Milo]

I appreciate everyone’s comments.

Consider the following:
HIV is an infectious disease
Rheumatoid arthritis is a rheumatologic disease
COPD is a pulmonary disease
Diabetes in an endocrine (or metabolic)disease
Parkinson’s disease is a neurological illness
Tuberculosis is an infectious disease
Endometriosis is a gynecological disease.

Myalgic Encephalomyelitis is a... environmental disease.

Yes or no

 

[mango]

Myalgic Encephalomyelitis is a... environmental disease.

Yes or no

Still 'No' for me.

 

[Gingergrrl]

I don’t think you can say yes or no b/c the triggers are so varied (and many have multiple triggers). My illness (whatever it will ultimately be called) had a series of immune triggers:

1) Neurotoxic reaction to antibiotic
2) Severe Mono from EBV
3) Toxic black mold exposure
4) Second unknown virus

I consider my illness to have both viral and environmental triggers which ultimately shifted into autoimmunity (but that does not change the initial triggers).

I don’t believe ME/CFS has one single cause. No one knows at this time but if some are triggered by EBV, some enterovirus, some Lyme, some mold/mycotoxins, some vaccines, some pesticides/organophosphates, etc, then I believe that SOME cases are environmental and some are not.

It would be like saying every broken leg is from a car accident when some could be from falling down stairs, from sports, or from endless causes.

The main thing is that environmental does NOT equal psychological.

 

[Jonathan Edwards]

I appreciate everyone’s comments.

Consider the following:
HIV is an infectious disease
Rheumatoid arthritis is a rheumatologic disease
COPD is a pulmonary disease
Diabetes in an endocrine (or metabolic)disease
Parkinson’s disease is a neurological illness
Tuberculosis is an infectious disease
Endometriosis is a gynecological disease.

Myalgic Encephalomyelitis is a... environmental disease.

Yes or no

I don't think that sort of categorisation adds up. Tuberculosis can be neurological or a rheumatology all illness. Rheumatoid arthritis is not a joint disease but is seen by rheumatologists. Endometriosis is a peritoneal disease. You can cut them lots of ways.

There are recognised environmental triggers inME but chieflyviruses. So there isn't much if any evidence of it being environmental in the political sense of being due to environmental damage by humans.