ME/FM Action Network response to IOM report

medfeb

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The National ME/FM Action Network of Canada reviewed the IOM report in their recent newsletter.

http://www.mefmaction.com/images/stories/quest_newsletters/Quest102.pdf - Page 4

The key concerns highlighted are the confusion in the intended scope of disease for the IOM criteria because of the conflation of terms and definition, the lack of international input, the fact that it is untested and the time to implement any new criteria.

It also gives useful historical background on the creation of CCC.
 

Gamboa

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Excellent. It is good to see the positive things that are happening in Ontario and Quebec (later pages of the newsletter). You wouldn't really know it if you were living here but I imagine in a couple of years, once all this information percolates down to everyone, it will be much easier getting medical help.

Great work and thanks to all the folks at ME/FM Action Network of Canada. Your work is very much appreciated by all of us.
 

SOC

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the lack of international input,
May I ask why this particular complaint? Isn't this an internal US study funded by US taxpayer money which applies to US organizations and citizens? Are other countries contributing to funding for this study or are they obligated to accept the conclusions in any way? This is a US-funded study intended to guide US policy. Why should international input be required?

Shouldn't the focus of this non-US organization be on insisting that their own country fund what they consider to be appropriate studies and/or research in the area? Do you complain that the neighbors didn't consult you about what variety of shrubs they plant next to their house because those aren't the shrubs you would choose? No, you choose (and pay for) the shrubs you want around your own house.

I, for one, would love to see more research money spent by all countries in the area of ME/CFS/SEID. The more money we get for research, the better. If everyone focused on cleaning up their own backyard instead of standing around complaining that the neighbors aren't doing it right, we'd make a lot more progress.
 

Kati

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May I ask why this particular complaint? Isn't this an internal US study funded by US taxpayer money which applies to US organizations and citizens? Are other countries contributing to funding for this study or are they obligated to accept the conclusions in any way? This is a US-funded study intended to guide US policy. Why should international input be required?

Shouldn't the focus of this non-US organization be on insisting that their own country fund what they consider to be appropriate studies and/or research in the area? Do you complain that the neighbors didn't consult you about what variety of shrubs they plant next to their house because those aren't the shrubs you would choose? No, you choose (and pay for) the shrubs you want around your own house.

I, for one, would love to see more research money spent by all countries in the area of ME/CFS/SEID. The more money we get for research, the better. If everyone focused on cleaning up their own backyard instead of standing around complaining that the neighbors aren't doing it right, we'd make a lot more progress.
@SOC I most agree with you. However countries like Canada (and official agencies) are much relying on agencies such as CDC to lead the way and set the standards.

Canada is very able to contribute to science, but chooses not to. An expert opinion such as the IOM report will come handy in requesting more to be done for 411,466 patients counted as per the 2010 Canadian Community Health Survey in 2010.
 

Ember

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Shouldn't the focus of this non-US organization be on insisting that their own country fund what they consider to be appropriate studies and/or research in the area?
International physicians were included on the CCC panel of experts; US patient organizations comment frequently on its results.
 

SOC

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International physicians were included on the CCC panel of experts; US patient organizations comment frequently on its results.
Good point. Who funded the CCC? Was it the Canadian government, ie the Canadian taxpayers? Was it intended to guide internal Canadian policy on ME/CFS or was it intended to guide international policy? Does Canada have a sufficiently large pool of experts to write such a document without bringing in outside experts? Do international patient organizations complain about how the Canadian government decides to do its internal business, or do they simply comment on the CCC itself?

I would love to see an internationally-funded, internationally-staffed, internationally-supported study that develops sound criteria, testing, and treatment for ME/CFS. We need to push for that within our own countries rather than complain about what other countries choose to do with their money. I'm a firm believer in cleaning up your own backyard before complaining about other people's yards.
 

Ember

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Do international patient organizations complain about how the Canadian government decides to do its internal business, or do they simply comment on the CCC itself?
The National ME/FM Action Network comments that "the international impact should have been considered:"
The IOM was instructed that “[t]he recommendations will have a domestic focus; however, major international issues may be identified.” No international issues were identified in the report. We see that as a serious oversight. ME/CFS is an illness that crosses international borders. It affects people in the US, in Canada, and all around the world. What happens in the US has spill-over effects into Canada and other countries. The international impact should have been considered.
The CCC panel of experts did consider the international impact of its work: “The draft of the Canadian Consensus Criteria (CCC) used the name 'myalgic encephalomyelitis' (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME.’”
 
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medfeb

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May I ask why this particular complaint? Isn't this an internal US study funded by US taxpayer money which applies to US organizations and citizens?
I hear two points in their newsletter:

1) this isn't just a U.S. disease - its international. To the extent that each country has its own disease definitions or concept of the disease, then progress in research and treatments will be impeded because we can't leverage studies being done in other countries, like the Norwegian and U.K. Rituxan studies.

2) what is defined in the U.S. spills over to other countries - as has been seen with CFS and Fukuda in the past

In a recent blog, Lenny Jason also mentioned the importance of getting international input.
 

Kati

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Good point. Who funded the CCC? Was it the Canadian government, ie the Canadian taxpayers? Was it intended to guide internal Canadian policy on ME/CFS or was it intended to guide international policy? Does Canada have a sufficiently large pool of experts to write such a document without bringing in outside experts? Do international patient organizations complain about how the Canadian government decides to do its internal business, or do they simply comment on the CCC itself?

I would love to see an internationally-funded, internationally-staffed, internationally-supported study that develops sound criteria, testing, and treatment for ME/CFS. We need to push for that within our own countries rather than complain about what other countries choose to do with their money. I'm a firm believer in cleaning up your own backyard before complaining about other people's yards.
The CCC is called so because the meeting happened in Canada. No more than that. Cdn gov didn't pay into it, and didn't get out if its way to promote it. It was not intended to guide internal policy though it would have been a nice touch. Physicians here are not aware of the document and when provided to them (for free) they do not read it nor do they follow the guidelines.

While Canada has a sufficient pool of physicians, they are for the majority no experts in (name the disease here). Most of them tell patients to go meditate their disease away.

The care I have received in Canada has been appalling. And I have tried over and over and over.
 
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Ember

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The CCC is called so because the meeting happened in Canada. No more than that.... Physicians here are not aware of the document and when provided to them (for free) they do not read it nor do they follow the guidelines.
The “Terms of Reference” for the Canadian Consensus Criteria (CCC) were established by Health Canada after the draft clinical definition had been written. Health Canada selected the Expert Consensus Panel for ME/CFS with at least one member having been nominated by each of five stakeholder groups: government, universities, clinicians, industry, and advocacy. Panel members had to be practicing MDs actively treating and/or diagnosing ME/CFS, or MDs or Ph Ds involved in clinical research of the illness. The members of the panel had autonomy over their consensus document.

A description of Health Canada's “Terms of Reference” is included in the ME/CFS Guidelines under the heading, Development of the Canadian Consensus Document:
The National ME/FM Action Network of Canada spearheaded the drive for the development of an expert consensus document for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). In response to increasing numbers of patients inquiring about doctors knowledgeable about ME/CFS, the Network sent a questionnaire to doctors across Canada asking what items would be most helpful in assisting them with their ME/CFS patients. The physicians concurred that a clinical definition, as well as diagnostic and treatment protocols were of prime importance.

The National ME/FM Action Network then approached two clinicians knowledgeable about ME/CFS and experienced in its diagnosis and treatment. Dr. Bruce Carruthers of British Columbia and Dr. Anil Jain of Ontario kindly agreed to co- author a draft document. Lydia Neilson, President of the National ME/FM Action Network, met with the Honourable Alan Rock, then Minister of Health, to discuss the results of the doctors’ survey and the draft document. The Honourable Alan Rock responded by stating the draft clinical definition was “a milestone in the fight against this complex and tragic condition”.

Health Canada established the “Terms of Reference”. One stipulation was that at least one member of the panel must be nominated by each of the five stakeholder groups of government, universities, clinicians, industry, and advocacy. There had to be at least ten members on the panel, four of whom could come from outside of Canada. Panel members had to be practicing MDs actively treating and/or diagnosing ME/CFS, or MDs or Ph Ds involved in clinical research of the illness. Their mandate was to develop a clinical definition that addressed a broader spectrum of the pathogenesis of the illness, as well as to provide diagnostic and treatment protocols for medical practitioners. The members of the panel would have autonomy over their consensus document.

Health Canada selected an Expert Consensus Panel for ME/CFS. The eleven-member Expert Consensus Panel received more than forty nominations including numerous nominations from each stakeholder group. The members of the Consensus Panel represented clinicians, university medical faculty, and researchers in the area of ME/CFS. Collectively, the members of the panel had diagnosed and/or treated more than twenty thousand ME/CFS patients.

Health Canada planned for a Consensus Workshop to be held on March 30 to April 1, 2001. Crystaal (Biovail Pharmaceuticals) funded the workshop without having any involvement with or influence over the Consensus Document. They hired Science and Medicine Canada to organize and facilitate the workshop.
In Canada, I was diagnosed with ME/CFS in 2005 because I fulfilled the CCC requirements. In 2011, I was reassessed following the ICC and diagnosed with ME. Myalgic encephalomyelitis is the name of the disease that appears in my medical records and in correspondence related to my care. My GP, ME specialist and naturopath are all familiar with the 2012 ME Primer, and my medical care is consistent with its guidelines.
 

SOC

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I hear two points in their newsletter:

1) this isn't just a U.S. disease - its international. To the extent that each country has its own disease definitions or concept of the disease, then progress in research and treatments will be impeded because we can't leverage studies being done in other countries, like the Norwegian and U.K. Rituxan studies.

2) what is defined in the U.S. spills over to other countries - as has been seen with CFS and Fukuda in the past

In a recent blog, Lenny Jason also mentioned the importance of getting international input.
If other countries want to use whatever the US decides rather than spend their own money doing what they think is best, that's their choice. Unsurprisingly, the result of US-funded studies is not going to be ideal for other countries. That doesn't mean the US should have to spend it's money doing their work for them. The US should be working on research and policy that suits the US and it's citizens. The same applies to all other countries. If it's important that there be a single, unified international policy, then that needs to be internationally funded and organized.

If you let someone else pay for the work, do all the work, and then you use that work for yourself without having contributed, it's pretty tacky to turn around and complain that you didn't get a say in that work which you put no effort into yourself. Get off your butt and do your own work the way you think it should be done.

Too many people (Lenny Jason included, it appears) think it's the job of the US to do everybody else's work. That kind of thinking has led us down some very unpleasant paths. I don't think that's what the world wants or needs. It shouldn't be up to the US to establish policy that the rest of the world uses, whether we're talking medical issues or political ones. International policies should be made, and the necessary work paid for, internationally. That's how internationally fair policies are made -- everybody contributes.
 

Kati

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The “Terms of Reference” for the Canadian Consensus Criteria (CCC) were established by Health Canada after the draft clinical definition had been written. Health Canada selected the Expert Consensus Panel for ME/CFS with at least one member having been nominated by each of five stakeholder groups: government, universities, clinicians, industry, and advocacy. Panel members had to be practicing MDs actively treating and/or diagnosing ME/CFS, or MDs or Ph Ds involved in clinical research of the illness. The members of the panel had autonomy over their consensus document.

A description of Health Canada's “Terms of Reference” is included in the ME/CFS Guidelines under the heading, Development of the Canadian Consensus Document:

In Canada, I was diagnosed with ME/CFS in 2005 because I fulfilled the CCC requirements. In 2011, I was reassessed following the ICC and diagnosed with ME. Myalgic encephalomyelitis is the name of the disease that appears in my medical records and in correspondence related to my care. My GP, ME specialist and naturopath are all familiar with the 2012 ME Primer, and my medical care has been consistent with its guidelines.
Well lucky you. i have had nothing but grief in Canada. From reccommendations to actually see a naturopath which is the upmost insult, to meditate, to 'the testing she has had in Miami is like going on a fishing expedition', to 'a pitient like her should not have access to further testing as it would reinforce to her she has a physical illness'.

While your GP and ME specialist may have diagnosed you, know that this is not the case for most canadians. Know that most specialsist have no clue what the Canadian Consensus criteria is, and know that this document is already 11 years old and know that the Public Health Agency needed much insistence to post the reference on their website and when they did, they put an australian link.

Moreover the Complex Chronic diseases clinic did not even say on what criteria I was diagnosed. It was signed by Bested and she was there.
 

SOC

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Health Canada planned for a Consensus Workshop to be held on March 30 to April 1, 2001. Crystaal (Biovail Pharmaceuticals) funded the workshop without having any involvement with or influence over the Consensus Document.
In other words, it was a privately funded effort not paid for by Canadian taxpayers. So it's up to the funder and sponsors to decide who the target audience is. Apparently they were shooting for an international audience for their definition. Good for them. That's the prerogative of a privately funded organization. Governments are different.
 

SOC

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Did you miss the words "without having any involvement with or influence over the Consensus Document?"
No, I assumed that meant the funder had no influence over the content of the Consensus Document. Also, that only applied to the funder, not the sponsor, The ME/FM Action Network of Canada. That organization apparently chose to have international experts on the panel, so clearly there was involvement and influence over the establishment of the panel and the intended audience. I stand by my statement:
So it's up to the funder and sponsors to decide who the target audience is.
Notice that I never said that the funder or sponsor influenced the content of the document. That was never the point. The point is: Was the document aimed at establishing policy for the Canadian government, or was it intended to be a guidance document for the international community? Two entirely different animals.
 

Ember

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The ME/FM Action Network of Canada. That organization apparently chose to have international experts on the panel, so clearly there was involvement and influence over the establishment of the panel and the intended audience.
How have you arrived at your conclusions? The document states, "Health Canada selected an Expert Consensus Panel for ME/CFS;" and "One stipulation was that at least one member of the panel must be nominated by each of the five stakeholder groups of government, universities, clinicians, industry, and advocacy."
 
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Kati

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Regarding the 5 co-authors from Canada other than our experts, where are they now, and why have no one heard of them befroe or ever since? These are not names you see in litterature or even loosely attached to ME. What contribution have they made to the field? How have they helped in disseminating the CCC?


- Anil Kumar Jain, BSc, MD, Ottawa Hospital, Ottawa, Ontario
- Pierre Flor-Henry, MB, CHD, MD, acad DPM, FRC, CSPQ, clinical director, general psychiatry, director, clinical diagnostics and research center, clinical professor of psychiatry, university of Alberta, Edmonton, AB
- Pradip Joshi, BM, MD, FRCPC clinical associate professor, memorial university of Newfoundland, St-John's, NL
- A.C. Peter Powles, MRACP, FRACP, FRCPC, ABSM, professor emeritus, faculty of health science, McMaster's University, Hamilton, On, professor, faculty of Medicine, university of Toronto, chief of medicine and sleep disorders consultant, St Joseph's Health Care, Hamilton and Central West Sleep Affiliation, Paris, On
- Jeffrey A. Sherkey MD, CCFPC, formerly in family medicine, University Health Network, Toronto, On. we sincerely regret that Dr Sherkey has since passed away.
 

SOC

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How have you arrived at your assumptions? The document reads, "Health Canada selected an Expert Consensus Panel for ME/CFS. One stipulation was that at least one member of the panel must be nominated by each of the five stakeholder groups of government, universities, clinicians, industry, and advocacy."
So who was actually the sponsor: Health Canada or The ME/FM Action Network? Clearly somebody was making choices about the panel. Panel members didn't just pop into the room out of nowhere. They were selected by someone at some point in the process.

Are we talking at cross purposes? I don't see the point of this in the context of government-funded studies to drive government policy vs privately-funded criteria documents. What am I missing?
 

Ember

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What am I missing?
"Health Canada established the 'Terms of Reference'. One stipulation was that at least one member of the panel must be nominated by each of the five stakeholder groups of government, universities, clinicians, industry, and advocacy:"
Health Canada selected an Expert Consensus Panel for ME/CFS. The eleven-member Expert Consensus Panel received more than forty nominations including numerous nominations from each stakeholder group. The members of the Consensus Panel represented clinicians, university medical faculty, and researchers in the area of ME/CFS. Collectively, the members of the panel had diagnosed and/or treated more than twenty thousand ME/CFS patients.
 

Kati

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"Health Canada established the 'Terms of Reference'. One stipulation was that at least one member of the panel must be nominated by each of the five stakeholder groups of government, universities, clinicians, industry, and advocacy:"
Is that supposed to explain why the Canadian government funded research for ME at a rate of 5 cents per patient per year for the last 10 years?

Maybe the CCC was supposed to make us shut up.

Now is the time to admit the Canadian government doesn't give a $&it.