Yes vs No - respectful discussion

[Bob]

What about the 3,000 plus research studies that the M.E community is always talking about? where have they all gone? Why could they not find more research to draw from. is it because the research isn't up to scratch or has it been buried and ignored.

They did include ME-related research. They considered relevant research from 1950 onwards. Their literature searches highlighted 9000 research papers. They have included e.g. brain scan (abnormalities) research, two-day CPET studies, and the Lights' research: All the stuff we asked them to.

I think the issue for them is the quality and/or consistency of research, a problem that notoriously plagues our field.

 

[Valentijn]

i can understand you not having energy to spare etc but dont be too harsh on those who havent read it yet "havent bothered". Im struggling to remember the new definition and kept forgetting it, all I can currently remember of that thou Ive read it 3 times now is that it had 50% unrefreshing sleep in it.

Then maybe it's best to just accept you haven't read it, and not try to argue points which you haven't looked up in the document.

SEID requires PEM, and PEM is quite well defined in the document. Ditto with "unrefreshing sleep", which is actually just saying PEM and/or the illness don't go away after resting up. The first three "criteria" are one criterion: PEM. Admittedly it's an awkward and inefficient summary, but there is a very thorough explanation in the document itself.

I'm one of the first to tear apart anything I don't like, but the report and SEID are excellent, overall. The only substantial current problems are with the summary of that information, and the future problems will be with the operalization of the new criteria and guides for doctors on how to deal with it.

The IOM report is our friend. One of the most positive and strongest that's come along in quite a while.

 

[eafw]

The IOM report is our friend. One of the most positive and strongest that's come along in quite a while.

Agree, and much of what people are raising as objections - why didn't they say about XYZ ? - are actually covered in there.

The only substantial current problems are with the summary of that information, and the future problems will be with the operalization of the new criteria and guides for doctors on how to deal with it.

Yes, and it could be the most perfect report in the world and we would still need the medical profession need to get over themselves (and their somatisation beliefs) and take it on board for things to move forward for us in practical terms.

 

[Mij]

Fatigue as a result of exercise intolerance exhibited by multiple conditions, is relieved by rest, so is not PEM and also would not qualify for SEID because it is relieved by rest. Also, exercise intolerance does not have "prominent symptoms primarily in the neuroimmune regions."

I'm getting more confused the more I read into this. So the sleep dysfunction criteria is to evaluate whether we get PEM from over exerting ourselves?

 

[Bob]

I do recommend that people at least dip into the report, to get a flavour of it. It's actually very easy to read, and if you just look for highlights that you might be interested in then it's easy to digest.

There has been an enormous amount of information to keep up with, so I do understand that people are struggling with it all. I haven't read the report from cover to cover, and I can't remember a lot of what I have read. But I think we need to understand what we're criticising.

I do accept that there valid criticisms of the name, criteria, and report. And it's interesting to hear everyone's opinions.

Some of the issues (e.g. whether a diagnosis of exclusion or a positive diagnosis is preferable, and the issue of primary or secondary comorbidities) are so complex that I'm struggling to understand the potential implications. I question whether these are back and white issues.

 

[Valentijn]

I'm getting more confused the more I read into this. So the sleep dysfunction criteria is to evaluate whether we get PEM from over exerting ourselves?

Yes. With other forms of exercise intolerance or "fatigue", sufficient rest will resolve it. Whereas we're still sick even if getting perfect sleep.

I think they messed up a bit in explaining PEM in the summary criteria, and tied in other aspects of sleep dysfunction which aren't really helpful. But in the report itself, the intention seems pretty clear.

 

[Bob]

The IOM report is our friend. One of the most positive and strongest that's come along in quite a while.

I agree with this, but I accept that many people have genuine criticisms about specific aspects of the report, and about the overall implications of the report. Some of the criticisms that I've seen have been baseless, but that doesn't invalidate genuine/informed criticisms.

 

[Mij]

Yes. With other forms of exercise intolerance or "fatigue", sufficient rest will resolve it. Whereas we're still sick even if getting perfect sleep.

I think they messed up a bit in explaining PEM in the summary criteria, and tied in other aspects of sleep dysfunction which aren't really helpful. But in the report itself, the intention seems pretty clear.

Thanks. I guess I got caught up with the word "fatigue". I was reading into it too much and was wondering why other debilitating illness criteria don't include whether your sleep is refreshed or dysfunctional. There are other debilitating illnesses with profound fatigue, I don't think part of their diagnostic criteria includes whether they have refreshing sleep. The fact is if you have MS, whether your sleep is refreshed or not it doesn't change anything. You still have MS when you wake up.

 

[eafw]

I'm getting more confused the more I read into this. So the sleep dysfunction criteria is to evaluate whether we get PEM from over exerting ourselves?

No, it is there because when they analysed the literature they found:

"Unrefreshing sleep, or feeling as tired upon waking as before going to bed,
is among the most common symptoms reported by ME/CFS patients, and
only a small percentage of patients diagnosed with ME/CFS fail to report
some type of sleep dysfunction"

Page 86 of the report

and similarly on pages 210, 211

"The committee weighed several factors in reaching consensus on
these diagnostic criteria: (1) the frequency and severity with which these
symptoms were experienced by patients, (2) the strength of the scientific
literature, and (3) the availability of objective measures supporting the as-
sociation of particular symptoms with the diagnosis. Patient reports and
symptom surveys as well as scientific evidence consistently showed that
impaired function, PEM (an exacerbation of some or all of an individual’s
ME/CFS symptoms after physical or cognitive exertion, or orthostatic stress
that leads to a reduction in functional ability), and unrefreshing sleep are
characteristic symptoms almost universally present in ME/CFS, and thus
the committee considered them to be core symptoms."

 

[Bob]

I'm getting more confused the more I read into this. So the sleep dysfunction criteria is to evaluate whether we get PEM from over exerting ourselves?

Yes. With other forms of exercise intolerance or "fatigue", sufficient rest will resolve it. Whereas we're still sick even if getting perfect sleep.

I think the sleep criteria is open to a certain amount of interpretation, but it helps to demonstrate that our symptoms (not just fatigue, but our overall health) and disability are not resolved by a good night's sleep, or by changing our lifestyle (i.e. SEID does not equate to being stressed out, being sleep deprived, or simultaneously holding down three jobs.) Sleep disruption is included in the operationalised criteria in the report, as a subset of unrefreshing sleep, so this is quite a flexible criterion.

 

[Valentijn]

There are other debilitating illnesses with profound fatigue, I don't think part of their diagnostic criteria includes whether they have refreshing sleep.

Yes, which is why I think the specification regarding sleep is a big mistake. They're trying to distance ME/SEID from fatigue, which isn't even necessary when it's so focused on PEM, and in the process they're making it sound like it's about sleep instead.

It's clumsy language and a clumsy summary, which does need to be rectified at some point.

 

[Mij]

@Valentijn "double like".