Inspiring History of the Canadian Consensus Definitions of ME/CFS and FMS

[Sing]

I am bowled over reading the "Recently Completed Summary on the History and Establishment of the Canadian ME/CFS and FMS Definitions" on the site www.mefmaction.net

Lydia Neilson's organization did the lion's share of the work to bring their Canadian version of the CDC, in Canada called the LCDC, from the point of accepting the CDC's research definition in the early 90's, to accepting the clinical consensus definition which Mefmaction brought about by: working through patient organizations to identify doctors who were treating ME/CFS patients, then add to those internationally expert physicians treating ME/CFS to come up with a consensus for a clinical definition--which they were able to do, unanimously!

Mefmaction has been working on translating and disseminating these definitions worldwide...Check out their site for some new inspiration!

 

[gracenote]

Thank you Sing.

 

[SOC]

Thanks, Sing! This is a great story of positive action on the part of ME/CFS and FMS suffers. I would have missed it without you.

 

[taniaaust1]

I am bowled over reading the "Recently Completed Summary on the History and Establishment of the Canadian ME/CFS and FMS Definitions" on the site www.mefmaction.net

Lydia Neilson's organization did the lion's share of the work to bring their Canadian version of the CDC, in Canada called the LCDC, from the point of accepting the CDC's research definition in the early 90's, to accepting the clinical consensus definition which Mefmaction brought about by: working through patient organizations to identify doctors who were treating ME/CFS patients, then add to those internationally expert physicians treating ME/CFS to come up with a consensus for a clinical definition--which they were able to do, unanimously!

That is what made this defination so good as it wasnt something a government person made up (Reeves) and that defination was put together by patients via the groups and actual experts in the field (rather than those who just have desk jobs!

Patients world wide need to be pushing for that defination to be used.. after all it was formed by Consensus by the actual experts and it is already recognised in a lot of countries.

 

[Sing]

taniaausti,

Exactly my opinion too. If the CDC had picked up on this clinical definition when it was completed in 2003, instead of just using the vague research definition that a committee came up with in 1994 (Were any of those even experienced clinicians with patients with ME/CFS? I recall that Dr. Byron Hyde said, not.)--Anyway, long sentence, if the CDC had built on this excellent work which the Canadians had started and which also involved some top US and international clinicians, we wouldn't be where we are today. The CDC has been going around in circles because of a loose, ill defined "research" definition, like a large net which picks up all kinds of fish. The progress in the field is being made by those who accept the CCD for patient cohorts as the WPI so famously did.

 

[Cloud]

It wasn't until the CCD came out that I became convinced of having ME/CFS. Before that, the only diagnostic criteria available (CDC) kept me chasing my tail because it was way too inclusive, defining many different diseases, but not one definitively (which contributed greatly to the progression of my disease). And yes, I had to self diagnose....we all know why. I applied to see Dr Peterson (co-author of the CCD), who after a 15 minute office interview and VO2 Max testing told me that I had "Classic ME/CFS". Finally a qualified diagnosis, 10 years after onset.

I've always been really thankful for this document and all those who contributed. It was a huge relief to finally read something that accurately defined my illness. To finally know what I had took so much stress off, and it directed me down the right path for the most recovery possible. Before that, I was like a man fighting to stay afloat in quiksand and didn't have a clue why I was sinking.

I have given the link to the CCD PDF out to several practitioners over the years.

 

[leelaplay]

I've always been really thankful for this document and all those who contributed. <snip>
I have given the link to the CCD PDF out to several practitioners over the years.

me too Cloud. Thanks for this Sing. I hadn't seen the new history section.

For anyone interested, Marj van de Sande, one of the organizers, just put out an update o the Overviews.

 

[shiso]

Thanks Sing, this really was inspiring...I guess I never thought about how the CCD came to be. The sheer amount of coordination and determined effort that it took to bring together all the collective expertise and make it happen is inspiring indeed.

If only the same magnitude of focus and skilled coordination could be achieved in this country - 7 years later. The work's already been done - all CDC needs to do is adopt it and base research studies using the CCD, and not spend a single federal cent more on whitewash "CFS" studies based on their very own ridiculous empiric definition that has already wasted time and money that we can't get back.