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

Woolie said:
I should add that the case for a specific disease aetiology has to be made based on evidence and not on where the different terms and classifications appear in systems like the ICD. As others have already pointed out.
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[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.
 
POSITION PAPER
ME INTERNATIONAL
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ME International’s Position

- ME is a distinct neurological disease separate from CFS and ME/CFS or SEID

- ME is defined accurately in the ICC

etc.
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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.
 
strategist said:
I suspect there may be an association between dislike of anything to do with "CFS" and whether the patient lives in a country where the CFS label was historically used to mistreat patients in some way. Or some other cultural reason, anyway.
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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.
 
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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
 
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Bill said:
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
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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.
 
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Jonathan Edwards said:
Yes, but that does not say who they are -in terms of real people.
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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.
 
Trish said:
As to who has what disease, and who has the 'right' to use the name ME, CFS, ME/CFS, SEID, CFIDS, or any other variations, as far as I am concerned, we are all sick, we all fit some or all of the various criteria that have been invented to help diagnose and research whatever it is we suffer from.
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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.
 
DigitalDrifter said:
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.
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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).
 
DigitalDrifter said:
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.
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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.

DigitalDrifter said:
I've been told by health professionals that severe ME is where you can work a full time job.
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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!
 
Bill said:
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.
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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.
 
DigitalDrifter said:
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.
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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
 
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