International Consensus Criteria (ICC) make all previous criteria obsolete? Discuss.

[drjohn]

International Consensus Criteria (ICC) 2011 render all previous criteria obsolete? Discuss (16 November 2011)

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Until we have a universally agreed diagnostic test for M.E. (Myalgic Encephalomyelitis), such as a blood test or scan, for example, researchers and therapists use a variety of diagnostic criteria (and sometimes more than one set of criteria in the same study) for subject selection.

It is clearly more than unsatisfactory - it may be said to be invalid, unreliable, untrustworthy - to compare the results and conclusions drawn from one experiment, research trial, or treatment outcome with others which used different criteria; quite plainly, not comparing like with like.

In a step towards unanimity of one set of criteria as the "best yet", I ask: is there any element contained in any previous criteria (e.g. Fukuda, Oxford, London, Canadian Criteria, NICE guidelines, Nightingale) which is not included in the ICC and, if so, which could not be added; or any element that is included but which ought not to be in the ICC that would make one prefer any other set of criteria to it?

Unless a good case can be made for any other criteria (old or new), I suggest that all future research be conducted using ICC, or an updated version of it and a review undertaken of some work used to make policy for treatment, which used other criteria before ICC was available.

Or have I oversimplified, or missed something?

Best wishes
John
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org

 

[Ember]

Unless a good case can be made for any other criteria (old or new), I suggest that all future research be conducted using ICC

Hear, hear!

 

[Tony Mach]

In a step towards unanimity of one set of criteria as the "best yet", I ask: is there any element contained in any previous criteria (e.g. Fukuda, Oxford, London, Canadian Criteria, NICE guidelines, Nightingale) which is not included in the ICC and, if so, which could not be added; or any element that is included but which ought not to be in the ICC that would make one prefer any other set of criteria to it?

The problem I see (from my personal standpoint) is that the ICC are very strict. Which is very very good for research, but can be bad for part of the patients if they don't have "full blown" ME/CFS. In my case, I would meet the CCC (and probably all other criteria), but barely the ICC.

The way I see it, there should be different "levels". If someone meets the ICC and all the other common things (like thyroid) have been ruled out, it is very very likely that that person has ME. If someone barely does not meet (or barely meets) the ICC (or the CCC), than there should the "probable ME/CFS" category. And for all those who would not meet ICC/CCC, but meet the other definitions, there should be a Chronic Fatigue (unknown cause/idiopathic) category.

This would help research: Any researcher could focus on "pure" ME/CFS. And she/he could always choose to add the less stricter levels, to see if there are common problems. E.g. a study for a biomarker (or a intervention study) could include 30 people with ME (ICC), and 30 with ME/CFS (probable) and 50 with CF (idiopathic). That would make it far more likely to find something in at least one group. Or to find common aspects or differences.

And this could be a chance give people earlier diagnosis. Maybe it would maybe be easier for physcians to give earlier a "probable" diagnosis. Physcians would take the ME disease more serious if it is stricter criteria and could use the "lesser" criteria faster for the cases that don't meet the stricter. It takes for many chronic disease 2 to 3 years until people get a diagnosis, I guess it is worse in ME/CFS and we need to cut it down. A differential diagnosis map (decision tree?) or some such maybe?

The problem is physicians need to know the criteria, need think they are right to use, they need to be reasonably simple. Is it ME? Or is it probable ME/CFS? Or is it CF? I think it is important that we acknowledge have a "illness spectrum", with possibly several causes, where we need to give some sorting on the one hand, but acknowledge the spread of the field and acknowledge that the decision between the levels is not a exact science...

(I find it difficult to focus right know, hope what I have written makes sense)

 

[Andrew]

There is some flexibility built into the ICC. I don't have a copy in front of me, but the primary DX it allows for no sleep problem and no severe pain. Also, it allows for a dx of atypical me that has two fewer symptoms in one of the categories. I don't remember which category.

 

[Ember]

The problem I see (from my personal standpoint) is that the ICC are very strict. Which is very very good for research, but can be bad for part of the patients if they don't have "full blown" ME/CFS. In my case, I would meet the CCC (and probably all other criteria), but barely the ICC.

As Andrew points out, the ICC allows for an atypical ME diagnosis: meets criteria for postexertional neuroimmune exhaustion but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases. By my calculation, a diagnosis of atypical ME would involve five symptoms, including PENE.

Doctor have always been creative in making predictive diagnoses, e.g., pre-cancerous or pre-diabetic. Remember too that the International Consensus Symptom Scale (ICCS) is still in the works.

 

[Guido den Broeder]

The ICCME are a big step forward, if only to put the whole CFS mess behind us.

I don't see them as the final word though. Missing are the viral connections that we know to be there. Something about them is mentioned in the article, but not in the criteria proper.

 

[Sing]

Before this thread gets overly complicated with all the possible "ifs, ands, and buts", I want to say that I am thrilled with the latest set of criteria for diagnosis and research purposes. At the same time, I feel that Tony Mach lays out a broader approach, which is also clear and useful. I think both the ICC as is, or an addition of broader, clearly named categories such as Tony Mach suggest, should take us out of "CFS Hell". What we don't want is any re-vamping or tolerance for those old, overly broad criteria which overlap with other more common conditions, to no end other than the conflation, or terminal confusion, of CFS with Depression.

I personally did not have a sudden onset (that I know of) and only gradually accumulated all the features of ME. So aging and a developing disease process produced the whole "enchilada" in my case. In some instances, I think, the "building" topples all at once, and in others, it crumples only slowly onto the ground. The progression is somewhat unpredictable. This is true for other neurological or autoimmune illnesses too.

I'd differ with Guido on the subject of viruses needing to be in this definition, not that they aren't relevant, but "cause" or "causes" haven't yet been generally established. (Some people know they got it after Mono, for instance, but many others had a different onset.) Eventually the causes will be determined. Right now, it is the most precise clinical picture which is at issue, rather than any statement or hypotheses about causes. Lots of other diseases don't have an established cause yet, but the clinical picture, course and useful treatments may be known. Logic looks to determining cause as the first step in understanding a disease, but it may be the last thing to be identified.

I've felt that the fixed approach towards first determining cause has been increasingly unintelligent. Years of this repetitious approach has gotten us almost nowhere. What we have needed is the clearest clinical definition our few specialists can produce and to learn about the illness process itself--what the h** is going on. Next we need helpful treatments. And somewhere along the line, causation is going to turn up.