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

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.

 

@Jonathan Edwards is this effective advocacy?

 

Duplicate thread merged in from here:

From @DxRevisionwatch on twitter.
Interesting article.
Prevalence rates - is this " official" diagnoses or including self report.

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

 

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?

 

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.

 

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

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.