The use of the labels ME, CFS, ME/CFS

[my bold]

Absolutely. The terminologies and their ambiguities are a maelstrom of contradictions and confusion; the very last thing one would hope any scientist considers to be evidential.

 

https://www.me-international.org/uploads/1/2/7/6/127602984/mei_position_paper_201119_final.pdf

I know in my own case, when I was less severe, I wouldn't have satisfied the ICC criteria but would have satisfied CFS, ME/CFS and/or SEID criteria. It seems quite unlikely to me that I have had 2 separate conditions. My impression is others have had similar experiences.

 

Who are 'ME International"? The links from that 'position paper' don't tell me much.

 

https://www.me-international.org/

Based on the content of the document, my guess is that it's a new organization by the people who made https://www.meadvocacy.org/

 

This seems definitely true from my observation in different countries. In Australia, patients and clinicians almost uniformly refer to "chronic fatigue," by which they mean "chronic fatigue syndrome," by which they mean the biomedical illness. That's the usage there. Anyone can make a definition and insist it's the right name matched with the right symptoms, but that doesn't mean common usage will follow those prescriptions.

 

Yes, but that does not say who they are -in terms of real people.

 

President: James Lutey

Vice-Presiden: David Steckel (presumably related to Colleen Steckel who has occasionally posted here)

Colorado, USA

https://www.guidestar.org/profile/84-3568066

Edit: there is more info here with more than just names https://www.me-international.org/board-of-directors.html

 

ME International may have a "position," but they have no evidence to support their contention.

Speaking in absolutes when we have no biomarkers or conclusive proof to support such claims is counter-productive and divisive.

Bill

 

Agree with you, but I very much believe we do do better here, because we are invariable dissecting this sort of stuff. This thread is not a bad example:

https://www.s4me.info/threads/greetings-from-rotterdam.18299/

Whiffly stuff might get mooted, and in a science-based forum that is important, but it then gets teased out pretty well.

 

ME-International

Board of Directors: James Lutey, David Steckel, Mary Kelley, Colleen Steckel
Board Members: Pam Lutey, Jennifer Caldwell, Janet Flynt, Bazia Zebrowski
501(c)(3) nonprofit - United States

Global Advocates for MEICC (GAME)
"Our effort in this group is to recognize that ME is the diagnosis and the ICC 2011 is the criteria. We do not acknowledge ME/CFS, CFS/ME as part of the criteria and we do not interchange CFS with ME or vice versa."
Board Members: Guido Den Broeder, Joan Byrne, John Gabor, Wendy Boutilier

 

It's going to be very difficult to make much progress when a small exclusive group is created and ideas are proposed that lack a solid scientific basis. They'll neither have the numbers nor the scientific credibility and my thinking is that both are essential to make progress.

 

Thanks to those with more persistent searching skills than I can muster.
It is certainly pretty hard to see who is making these claims.
But all is clear now.

 

previous discussions (tag 'name')

https://www.s4me.info/threads/trying-to-understand-the-me-is-not-cfs-movement.1926/

https://www.s4me.info/threads/not-a...r-where-is-my-stocking.3659/page-3#post-66033

 

The problem is when you get people with only chronic fatigue (and no exertion intolerance) claiming that they have ME, it devalues and trivializes the illnesses that genuine ME patients have. The use of loose criteria can render research meaningless and waste money. Also this can cause harm to genuine ME patients as it has in my case. I've been told by health professionals that severe ME is where you can work a full time job.

I think SEID is the best name we've had so far but the IOM really screwed up by not declaring SEID a separate entity from CFS, so now the Wikipedia article for SEID redirects to CFS and we're back to square one.

 

Not at all.

CFS is a "syndrome" (which appears to be an accurate descriptor of this illness as it is manifested in people with this illness, and it isn't "chronic fatigue (sans PEM).

There is no established difference between ME, CFS, ME/CFS, CIFIDS, or SEID. All names for the same thing.

CFS patients are a genuinely sick as patients whose doctors use a different terminology due to national preferences in their home countries.

Bill

 

Agree with @Bill—probably not a good idea to subdivide patients with the MECFS syndrome into subgroups based on which symptom is the most prominent or disabling— this is what Guido was trying to do (I think).

 

I agree to a certain extent.

Conflating chronic fatigue where fatigue is the only symptom and chronic fatigue syndrome doesn't do anyone any favours.

It is true that some researchers deliberately widened entry criteria to include those with chronic fatigue and even exclude those with ME but then gave the impression that their results could be applied to all.

PACE, that thing of beauty, when we finally got at the data seemed to prove that GET and CBT did very little for anybody and harm a far greater number than they help.

They are talking out of the other oriface, whether or not they know that. You could ask them for the source of such a claim - I'm betting they won't tell you because they can't. Unfortunately, there are health professionals who will opine even where they haven't the knowledge or expertise to do so.

Personally, I don't believe either ME or CFS are particularly accurate. Both have been weaponised here in the UK. I don't see the point of arguing which is the least accurate term when the health service don't really care about my opinion on the subject & will continue to call it what they call it.

It seems a shame to continue fighting a battle that was already lost years ago when we have so many more productive things we could be doing. Things that might lead to new ideas and research. Research that might demonstrate that a new name is appropriate, or better yet find a flippin' cure!

 

I agree that ME isn't a good name for our illness (for multiple reasons) but people who suffer from an adverse reaction to exercise or exertion need their own diagnostic label to separate them from fatigue patients. It's harmful to lump everyone in to one label.

 

I agree. A proper criteria for defining our illness should include the phenomenon currently called PEM.

Those (like myself) who know their illness as CFS experience PEM that's just as real as those whose people whose national naming preferences lead them call this illness ME do. The only difference is the name that's applied. After many decades it is frankly a real drag to deal with this.

ME/CFS is a compromise naming solution. Arguing over the nomenclature is a waste of energy IMO. Especially when ME is a medically dubious descriptor if one attaches meaning to the Latin.

The term "post-exertional malaise" isn't free of its own issues, but we understand what it describes and that facilitates communication.

Rather than squabbling over national naming preferences, I wish we kept our eyes on the prize.

I'm as frustrated as anyone with the lack of progress. Trust me on that one.

Bill