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MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"
Jonathan Edwards
Senior Member (Voting Rights)
An awful lot of hard work must have gone into this but I am sorry to say that I think it is unhelpful. I don't think the author actually understands how diagnostic criteria work. That is not so surprising since most doctors do not understand how they work, but this is a real muddle.
Diagnostic criteria are of no real interest in medicine most of the time. They are almost never appropriate to use in a clinic. Diagnostic criteria are different from classification criteria used in research, which are necessary but serve a quite different purpose. It is for instance, sensible to require someone with ME to have a 6 month history for certain sorts of study but it makes no sense to require a 6 month history when looking after someone in the clinic.
I am increasingly worried that MEAction is trying to set up a medical education platform without any meaningful professional guidance. Other charities and support groups at least tend to have medical advisors. I realise that those medical advisors may provide unhelpful advice, but trying to provide information without professional help is a precarious business.
I would rather see it explained to PWME that diagnostic criteria are essentially a red herring. There are more important things to work on.
I might also point out that criteria is a plural word. There is no such thing as a criteria. There is a criterion and there are sets of criteria. I think the article might also do well not to use words like disambiguation and interlocutor. They may sound erudite but is that the point of the article?
Diagnostic criteria are of no real interest in medicine most of the time. They are almost never appropriate to use in a clinic. Diagnostic criteria are different from classification criteria used in research, which are necessary but serve a quite different purpose. It is for instance, sensible to require someone with ME to have a 6 month history for certain sorts of study but it makes no sense to require a 6 month history when looking after someone in the clinic.
I am increasingly worried that MEAction is trying to set up a medical education platform without any meaningful professional guidance. Other charities and support groups at least tend to have medical advisors. I realise that those medical advisors may provide unhelpful advice, but trying to provide information without professional help is a precarious business.
I would rather see it explained to PWME that diagnostic criteria are essentially a red herring. There are more important things to work on.
I might also point out that criteria is a plural word. There is no such thing as a criteria. There is a criterion and there are sets of criteria. I think the article might also do well not to use words like disambiguation and interlocutor. They may sound erudite but is that the point of the article?
Hoopoe
Senior Member (Voting Rights)
You could write a guest post on ME Action.
PS: and reach a broader audience rather than just the small Science For ME community.
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Jonathan Edwards
Senior Member (Voting Rights)
I did write something for MEAction once but they took it down.
adambeyoncelowe
Senior Member (Voting Rights)
I'm guessing that this isn't medical education, per se, but an overview of criteria with a political point written for stakeholders/patients. I.e., it's written with the intent of putting an end to the 'One True Way' arguments around ME.
As this is feeding into the policies and values process, I suspect it's designed to encourage people to be open-minded about what the eventual recommended diagnostic criteria are for the organisation (some patients have demanded that they come out on one side or another, so I think they'll have to make a statement about this at some point).
And reading between the lines, it looks as if there might be different criteria recommended for clinical and research use (e.g., IOM and CCC), with this being part of the articulation for why that's the outcome.
I think this sort of discussion will be almost mandated, since one of the regular complaints about #MEAction (which I don't think is wholly accurate) is that they promote the IOM criteria while (some, very vocal) patients feel they should only promote the ICC.
(I say it's not wholly accurate because the listed symptoms in their literature actually look more like the CCC (four essential criteria, including pain which isn't a core IOM criterion), but with some wording borrowed from the IOM. Then there's the US medical education stuff which uses the IOM report and the CDC recommendations to stay accredited, but therefore has to use similar wording and language. Though that still looks very CCC-like to me.)
It would be interesting to see what the surveyed experts think, though it's likely to be a partial list (there aren't going to be many pro-Oxford clinicians onboard, for example).
There are also a couple of smaller criteria absent (London Revised, Westcare, Jason's four-item empiric criteria) and two major criteria (Reeves and NICE 2007).
As this is feeding into the policies and values process, I suspect it's designed to encourage people to be open-minded about what the eventual recommended diagnostic criteria are for the organisation (some patients have demanded that they come out on one side or another, so I think they'll have to make a statement about this at some point).
And reading between the lines, it looks as if there might be different criteria recommended for clinical and research use (e.g., IOM and CCC), with this being part of the articulation for why that's the outcome.
I think this sort of discussion will be almost mandated, since one of the regular complaints about #MEAction (which I don't think is wholly accurate) is that they promote the IOM criteria while (some, very vocal) patients feel they should only promote the ICC.
(I say it's not wholly accurate because the listed symptoms in their literature actually look more like the CCC (four essential criteria, including pain which isn't a core IOM criterion), but with some wording borrowed from the IOM. Then there's the US medical education stuff which uses the IOM report and the CDC recommendations to stay accredited, but therefore has to use similar wording and language. Though that still looks very CCC-like to me.)
It would be interesting to see what the surveyed experts think, though it's likely to be a partial list (there aren't going to be many pro-Oxford clinicians onboard, for example).
There are also a couple of smaller criteria absent (London Revised, Westcare, Jason's four-item empiric criteria) and two major criteria (Reeves and NICE 2007).
I can see a huge amount of work went into this, and I commend the effort. I'm not sure whether we can gain any more from this article than from a simple listing of each set of criteria, except as a historical study of the way criteria develop.
In practical terms, doctors diagnosing ME/CFS should know about PEM and the most common accompanying symptoms like fatigue, pain, orthostatic intolerance, brain fog etc, and do appropriate exclusionary tests.
And I think researchers are getting better at choosing criteria that include key symptoms, especially PEM.
I confess I gave up reading all the detail after Oxford. It was more than I could take in.
A few small quibbles:
In practical terms, doctors diagnosing ME/CFS should know about PEM and the most common accompanying symptoms like fatigue, pain, orthostatic intolerance, brain fog etc, and do appropriate exclusionary tests.
And I think researchers are getting better at choosing criteria that include key symptoms, especially PEM.
I confess I gave up reading all the detail after Oxford. It was more than I could take in.
A few small quibbles:
That doesn't make sense to me. Oxford is six months disabling fatigue that does not have a know cause from another disease. It includes people who fit all the other ME, ME/CFS and CFS criteria. The above quote suggests it's only people who don't fit the other criteria.
hEDS and POTS (and MCAS?) are diagnosed on signs as well as symptoms. There is a difference.
Was this requirement for both physical and cognitive fatigue included in PACE?
This is described as a subgroup called PIFS (post infectious fatigue syndrome) in the paper cited. It says who fits this subgroup should be specified in studies that use the criteria.
Barry
Senior Member (Voting Rights)
Whatever the applicability of this might be in a clinical setting, I personally found the article very helpful in its clarification of the various diagnostic 'specifications' that exist, and how they differ. Until now not had such a good clarification, so many thanks for this @JaimeS. (I cannot think of a better word than 'specifications' (for Oxford, Ramsay, etc), but I'm sure there must be one; 'criteria' is a confusing name for them, because they are themselves each defining their own particular set of diagnostic criteria).
One thing I would say about PEM, and I've said in the past: A key goal of pacing is to reduce the severity and likelihood of PEM. My wife paces very well most of the time, and her PEM is typically relatively mild and of shorter duration - less than a day. It's only when she gets her pacing wrong that it hits her harder, and may then persist for days, maybe a week or more if she got it badly wrong.
So my cautionary note is that if someone with ME does not seem to experience PEM, it may not be because they are not liable to it, but may just be that they have got their pacing right! On the other hand, if a pwME really knows that on some occasion they have gone way past their pacing limit (e.g. just had to stop because they simply could not go on), but did not experience PEM following that, then maybe that really would mean the don't get PEM.
One thing I would say about PEM, and I've said in the past: A key goal of pacing is to reduce the severity and likelihood of PEM. My wife paces very well most of the time, and her PEM is typically relatively mild and of shorter duration - less than a day. It's only when she gets her pacing wrong that it hits her harder, and may then persist for days, maybe a week or more if she got it badly wrong.
So my cautionary note is that if someone with ME does not seem to experience PEM, it may not be because they are not liable to it, but may just be that they have got their pacing right! On the other hand, if a pwME really knows that on some occasion they have gone way past their pacing limit (e.g. just had to stop because they simply could not go on), but did not experience PEM following that, then maybe that really would mean the don't get PEM.
adambeyoncelowe
Senior Member (Voting Rights)
In theory, these questions on the CFQ are usually labelled as 'cognitive fatigue' (though patients would call them brain fog, probably):
So cognitive fatigue was probably a core criteria, in that if you lacked it, you wouldn't score highly enough on the questionnaire to enter the trial as it includes four of the eleven questions.
Sly Saint
Senior Member (Voting Rights)
there was another one proposed, discussed a few years ago at the other place.
The Nightingale,Myalgic Encephalomyelitis (M.E.)Definition
Given recent events with Dr Hyde, all of his work seems to have been largely dismissed. But there are a number of things in this definition/diagnostic criteria that are being 're-examined' in current research.
What if this definition had been adopted for the 2007 guidelines(?)
http://www.investinme.org/Documents/PDFdocuments/Byron Hyde Definition Booklet.pdf
The Nightingale,Myalgic Encephalomyelitis (M.E.)Definition
Given recent events with Dr Hyde, all of his work seems to have been largely dismissed. But there are a number of things in this definition/diagnostic criteria that are being 're-examined' in current research.
What if this definition had been adopted for the 2007 guidelines(?)
http://www.investinme.org/Documents/PDFdocuments/Byron Hyde Definition Booklet.pdf
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Wilhelmina Jenkins
Senior Member (Voting Rights)
All of the Values and Policies articles are meant to encourage community discussion, so I would suggest that all of the posts above be added to the comments section after the article.
And @Jonathan Edwards , would you mind saying what you posted to ME Action and where? It should not have been taken down, if I understand correctly.
And @Jonathan Edwards , would you mind saying what you posted to ME Action and where? It should not have been taken down, if I understand correctly.
Colleen Steckel
Established Member (Voting Rights)
I agree this isn't medical education but I think it is important that patients have a basic grasp of the criteria they are attempting to demystify. I am also reading between the lines that this is solidifying MEAction's push for the IOM as the clinical tool instead of the ICC.
I agree this is feeding into the policies and values process and while it is encouraging people to be open minded some of the information presented regarding the ICC is inaccurate. So while I would love for this to be helping patients understand these criteria, with the misinformation it is not fulfilling the goal.
And, yes, I am one of the vocal patients who feels the ICC is an important tool for doctors to fully understand the ME patient experience (including neurological, immunological, and cardiac) which is lacking in the IOM (SEID).
I have posted the following on the article. I don't know whether it will be approved.
"I agree it is very important that the community has good information to look to for understanding the different criteria.
There are some inconsistencies in this that would be good to correct. One of those is under the "Time to Diagnose" you have ICC is three months [waiting period].
Here is the actual quote from the ICC "“The Canadian Consensus Criteria were used as a starting point, but significant changes were made. The 6‐month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for 6 months.”
For anyone trying to wade through how to use the ICC diagnostic criteria I recommend the ICC Questionnaire from www.MEadvocacy.org (resources page).
English - https://d3n8a8pro7vhmx.cloudfront.n...636/ICC_Questionnaire_Nov_2016.pdf?1478717636
Spanish - https://assets.nationbuilder.com/me...Y_COMO_ENCAJO_EN_LOS_CRITERIOS.pdf?1552023295
Dutch - https://assets.nationbuilder.com/me...Questionnaire_Dutch_2019_March.pdf?1552413206"
A further point - they are adding to the confusion by using the ME/CFS label for both the CCC and the IOM. Those are very different criteria. CCC should be the only criteria using the ME/CFS label as that is what has been recognized by the research community in the studies using CCC.
ME/CFS does not have an ICD code. So to utilize ME/CFS (IOM) is confusing to doctors who have to decide whether they are going to use an ME or a CFS code. What we now know is there is a push in the US to give SEID (aka ME/CFS-IOM) an ICD code. So possibly this effort is laying the groundwork for US to soon have an ICD code for SEID.
Jonathan Edwards
Senior Member (Voting Rights)
I cannot remember. And to be honest I am not motivated to try.
Wilhelmina Jenkins
Senior Member (Voting Rights)
My understanding is completely different. ME Action, in its recent petition, called for NIH to organize a meeting of ME experts to reach consensus on patient selection methods and criteria. This effort is to clarify the criteria, not to choose between them. Without biomarkers, all of the criteria have limitations.
The major push from ME Action has been to call for the requirement of PEM in the selection of subjects for research studies. NIH and CDC have not yet agreed to that requirement.
Your corrections were posted and appreciated. In a project this large, there are bound to be errors. I hope that anyone who spots errors will post them to the article do that the article can be corrected.
Future articles about criteria will come from the clinician community. If you know of a clinician who would like to support using ICC in a clinical setting, I hope that they will submit information to that effect. All of the articles are written by one author, but additional community input is welcomed.
G
Guest 102
Guest
Agree, while well-meaning and a lot of hard work, it comes across as little cluttered.
And what on earth is ’peri-onset’? I can find no definition - and Ramsay refers only to the more simple ‘onset’. TBH I find the clarifications and misconception section on Oxford and Ramsay a bit garbled. I pointed this out in the website comments thread but my comment was not published. FWIW, this is what I wrote on MEACT website:
***
The proliferation and confusion of criteria for ME since 1980s is a major issue in this illness, and, while well-meaning, this guide is lacking clarity re. Oxford and Ramsay, IMO.
PIFS, a post-infectious syndrome, was a *subtype* of Sharpe’s 1990s Oxford CFS.
(And in reality it was fast forgotten. Idiopathic chronic fatigue - CFS - without a proven infectious trigger was far too easily - and catastrophically - conflated with RamsayME.)
In your description of Ramsay, ‘peri-onset’ is referenced. I have no idea what peri-onset means, have never come across it and it is not written on page 29 of his book, which refers simply to onset.
(I do know what peri- means, as in perimenopause.)
And Ramsay spoke crucially of ‘feeling awful’ and of fatigability on trivial exertion, PEM had not yet been coined. So how can ‘Ramsay mention post-exertional malaise (though he doesn’t label it as such) in his description of peri-onset symptoms’ if PEM did not exist when he wrote his book? He may describe similar effects but he never *mentions* PEM.
Am sorry but this along with ‘peri-onset’ lacks clarity.
*edited to italicise quote and add a few sentences.
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wdb
Senior Member (Voting Rights)
So say you were tasked with writing a pamphlet titled "Clinicians guide to diagnosing ME/CFS" what would it contain ?
Jonathan Edwards
Senior Member (Voting Rights)
I don't think clinicians should learn to diagnose from pamphlets by and large. I would be very wary of any pamphlet with that title. Learning how to diagnose should come from (a) understanding what core concept the diagnosis is intended to cover and (b) working with more experienced colleagues and gradually coming to see when the diagnosis is likely to be useful and when not. For clinicians who are not in an environment where they cannot learn from working with more experienced colleagues in that field they should refer to someone who has been.
The 2007 NICE guidelines to some extent take a sensible approach. If I remember rightly there are no 'NICE diagnostic criteria'. The guidelines say that if certain features are present then it is worth considering a diagnosis of CFS/ME. It is not a question of having two rubber stamps one saying ME and the other not ME and stamping a passport with one or the other. Medicine should never be like that.
wdb
Senior Member (Voting Rights)
So how would you describe the core concept the diagnosis (ME/CFS) is intended to cover ?
It just seems to me unavoidable that until we find something objectively measurable it is at some point going to have to come down to a list of symptoms.
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G
Guest 102
Guest
My comment I submitted to the thread was not published, Wilhelmina.