Recognizing and Improving Care for ME/CFS, FM and ES/MCS (Canada)

MeSci

MeSci

Senior Member (Voting Rights)
Source: Canadian Family Physician

Vol 64, #6, pp 413-415

Date: June 2018

URL: http://www.cfp.ca/content/64/6/413

Report: Time for Leadership: Recognizing and Improving Care for those with ME/CFS, FM and ES/MCS

http://www.health.gov.on.ca/en/comm...task_force_on_environmental_health_report.pdf

Recent insights into 3 underrecognized conditions:

Myalgic encephalomyelitis–chronic fatigue syndrome, fibromyalgia, and environmental sensitivities–multiple chemical sensitivity
----------------------------------------------------------
Howard Hu(1,*), Cornelia Baines(2)

1 Professor of Environmental Health, Epidemiology, Global Health and Medicine and Founding Dean of the Dalla Lana School of Public Health at the University of Toronto in Ontario.
2 Professor Emeritus in the Dalla Lana School of Public Health at the University of Toronto.
* Corresponding author. Email: howard.hu@utoronto.ca

The Ontario Ministry of Health and Long-Term Care recently released the interim report of a task force charged with providing recommendations on 3 symptom-based conditions that have both shared and distinctive features (Box 1): myalgic encephalomyelitis–chronic fatigue syndrome (ME-CFS), fibromyalgia (FM), and environmental sensitivities–multiple chemical sensitivity (ES-MCS).
 
"...convening experts on all 3 conditions to establish case definitions and subsequently to create clinical practice guidelines that will be valuable both for everyday recognition and management and for formulating a basis for research..."

The Task Force Report recommendations the article is referring to was released last August. Its good to see 2 new medical names weigh in on ME (and FM and MCS).

My problem is with how the Task Force is moving forward: The only dollar amount ($200,000) that is attached to any of the recommendations is for the above quote about developing case definitions and to create clinical guidelines.

Of all the things $200k could do to advance ME in Ontario, creating yet another case definition is about the last thing the money should be spent. It is a bureaucratic masturabatory exercise.

Another organization, Health Quality Ontario, is considering developing guidelines for ME. I'll bet dollars to donuts the Task Force and HQO are not in contact to know of the other's work. More potential repetition.

Last week a new Premier of Ontario (that makes my skin crawl) was elected. He'll most likely appoint a new Minister of Health. Will this new Minister act on the Report recommendations? I ain't holding my breath.
 
Amw66 said:
Prevalence rates - is this " official" diagnoses or including self report.
http://www.cfp.ca/content/64/6/413
Click to expand...

Prevalence rates published in the linked article were obtained from The Canadian Community Health Survey (CCHS). It is a voluntary, self-reported telephone survey that covers a wide range of illnesses and behaviours that impact an individual's health. It is intended to capture statistics related to conditions "diagnosed by a health professional". This is stated at the start of the survey, and there are occasional reminders.

With respect to ME-CFS (article designation), FM and ES-MCS (environmental sensitivities-multiple chemical sensitivities), the questions from the Statistics Canada survey script were as follows, with no qualifier or reminder that they be clinically diagnosed:

Do you have fibromyalgia?
Do you have chronic fatigue syndrome?
Do you suffer from multiple-chemical sensitivities?

I hope it's just a coincidence that these questions appeared immediately after those regarding mood and anxiety disorders.

In my opinion, a self-reported survey is likely to be reasonably accurate only when an illness has, at the very least, a standardized diagnostic criteria that is consistently used by clinicians and patients within the population being surveyed. Even better if there is a diagnostic test, or tests. Neither situation applies in Canada, or elsewhere, for any of the conditions listed in the article.

Related to ME/CFS, there are many inconsistencies in the CCHS survey results that make me question the usefulness of the data. The survey may have captured many patients whose illness is very mild, or who are chronically fatigued for other reasons. There's no way to know for sure.

The telephone survey script I found was a 406-page PDF (linked below). Not many moderate to severe ME patients would have the endurance to complete the survey, or the memory to remember the answers. I know I wouldn't.

http://www23.statcan.gc.ca/imdb-bmdi/instrument/3226_Q1_V7-eng.pdf

@Amw66 Is there a particular reason why you're wondering about the prevalence rates in the article you posted?
 
MsUnderstood said:
Prevalence rates published in the linked article were obtained from The Canadian Community Health Survey (CCHS). It is a voluntary, self-reported telephone survey that covers a wide range of illnesses and behaviours that impact an individual's health. It is intended to capture statistics related to conditions "diagnosed by a health professional". This is stated at the start of the survey, and there are occasional reminders.

With respect to ME-CFS (article designation), FM and ES-MCS (environmental sensitivities-multiple chemical sensitivities), the questions from the Statistics Canada survey script were as follows, with no qualifier or reminder that they be clinically diagnosed:

Do you have fibromyalgia?
Do you have chronic fatigue syndrome?
Do you suffer from multiple-chemical sensitivities?

I hope it's just a coincidence that these questions appeared immediately after those regarding mood and anxiety disorders.

In my opinion, a self-reported survey is likely to be reasonably accurate only when an illness has, at the very least, a standardized diagnostic criteria that is consistently used by clinicians and patients within the population being surveyed. Even better if there is a diagnostic test, or tests. Neither situation applies in Canada, or elsewhere, for any of the conditions listed in the article.

Related to ME/CFS, there are many inconsistencies in the CCHS survey results that make me question the usefulness of the data. The survey may have captured many patients whose illness is very mild, or who are chronically fatigued for other reasons. There's no way to know for sure.

The telephone survey script I found was a 406-page PDF (linked below). Not many moderate to severe ME patients would have the endurance to complete the survey, or the memory to remember the answers. I know I wouldn't.

http://www23.statcan.gc.ca/imdb-bmdi/instrument/3226_Q1_V7-eng.pdf

@Amw66 Is there a particular reason why you're wondering about the prevalence rates in the article you posted?
Click to expand...
Prevalence rates interest me as the cfs figure seemed high.

Given there may be environmental factors in causation and/ or perpetuation prevalence rates v location would be an interesting study.
 
On the surface, this is a sympathetic article and similarly the recommendations seem sympathetic. However "the devil can be in the details": education and guidelines could, for example, promote exercise programmes and/or CBT for ME/CFS.

Also it says that care should be standardised which could mean clinics focusing on relatively cheap nonpharmacological approaches.
 
Biological mechanisms:

ME-CFS and FM Some advances have clearly been made in recognition of and research into ME-CFS and FM. Recent reviews,4-7 including those by the US Institute of Medicine and advice for patients by the American College of Physicians, support the existence of these conditions as distinct disabling disorders affecting millions with a likely organic or physiologic basis. Infections are the suspected initial trigger of ME-CFS, with contribution from environmental and polygenetic susceptibility factors. Evidence is mounting for involvement of immunologic and inflammatory pathologies, neurotransmitter signaling disruption, microbiome perturbations, and metabolic or mitochondrial abnormalities. Regarding FM, the central nervous system is likely involved, triggered by physical trauma or infections. Twin studies indicate inheritance might contribute to half the risk of developing FM.7 Some studies suggest the involvement of genetic polymorphisms related to the metabolism of neurotransmitters involved in pain modulation.
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I don't find a summary of fibromyalgia research that promising. I think there is likely to be peripheral component to at least some cases of fibromyalgia e.g. single fibre neuropathy

Stigma and meagre funding:

ES-MCS In contrast, recognition of and research into ES-MCS in North America has remained bleak. (The exception is some early work by the University of Toronto’s Environmental Hypersensitivity Research Unit that found discriminant validity of 2 published case definitions8 and identified associations with genetic polymorphisms that are known to alter metabolism of some chemicals.9) A detailed PubMed search uncovered only 320 references specific to ES-MCS, compared with 7453 references specific to ME-CFS and 9846 references specific to FM, with relatively few describing original research. No highlevel reviews of the evidence surrounding ES-MCS have occurred since a 1999 statement made by the American College of Occupational and Environmental Medicine10 and a 2001 international workshop,11 both concluding that substantial research investments were needed. No such investments followed.

Research funding for all 3 conditions has been meagre or nonexistent. From 2012 to 2015, for example, the Canadian Institutes of Health Research funded 2, 11, and 0 grants for ME-CFS, FM, and ES-MCS research, respectively, with a combined total of $1.8 million—less than 10% of the funding for research on emphysema or on multiple sclerosis and epilepsy, which have lower prevalences.

Slow progress likely reflects, in part, the social stigmatization surrounding these conditions.12,13 This is particularly severe for ES-MCS, given the common need for affected patients to avoid everyday exposures to items that trigger their symptoms, such as fragrances, cleaning products, and marking pens.14 Stigmatization also increases the risk of anxiety, depression, and other psychological symptoms that can be mistaken for causes rather than effects of the diseases themselves. Moreover, the uncertainty surrounding management strategies and, in the case of ES-MCS, the legal struggles that often occur regarding causation and avoidance issues, also arguably cast a “chill” on clinicians and scientists, deterring involvement in clinical care and research.
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The fibromyalgia population is huge. Cort Johnson has highlighted he is not aware of many if any initiatives to raise money privately for fibromyalgia research. I think this is a big factor in slowing down progress into conditions. And something that could be reversed with fibromyalgia.

Although in theory the environmental sensitivities-multiple chemical sensitivity population is big, I'm not sure if the community is that active. It seems smaller than the ME/CFS community.
 
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