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I was a sedentary control in one of the Keller studies. In addition to the 2 CPETs, they collected information on symptoms and their severity before CPET-1, before CPET-2, 24 hours after CPET-2 and then out to 10 days after the first CPET. They used the Specific Symptom Severity (SSS) instrument...

Yea, right! Excessive as decreed by the doctor

Many people, including the chair of the DSM-IV, objected to SSD when DSM-5 was being created that this would be used as an arbitrary bolt-on psychiatric diagnosis. That was ignored This is the chair of the DSM-IV in BMJ (and elsewhere) on SSD when DSM-5 was being reviewed and then published...

Fukuda or some variant of it is still being used by some as referenced above ICC is also being used by some but I'd have to dig for examples.

I appreciate views can vary on which studies are contributing to progress. But the 2025 Mancini CPET paper is now part of the ME/CFS evidence base that people are using. Jarred Younger has been using Fukuda as in this 2024 paper, and more recently this 2025 paper on possible racial disparities...

The Fukuda criteria are still being used by some researchers and officially, CDC and NIH continue to support the use of them and any other criteria. They have refused to require PEM for a diagnosis of ME/CFS. I resigned from NIH's CDE initiative in 2023 after years of trying to change this. And...

NIH's Common Data Elements has not been a tool development effort. Its focus has been on reaching consensus on what data needs to be collected in research to improve the standardization and quality of data collection and analysis. The latest effort in 2023 focused on a narrow set of elements...

An initiative, funded by the Public Health Agency of Canada, has published guidelines for Post COVID-19 Condition. The website is here. On that website is this list of the full set of recommendations. You can filter by the type of recommendation and drill down to details on how they developed...

To clarify - it's the authors that retain the rights to use the draft protocol elsewhere

For ease of access, the direct links to the open letters are Letter to Cochrane: Letter to the Community:

Thanks for that, Trish

Cochrane's response to the 2023 complaint said the following: Has anybody looked at that document and what it says about harms? If so, would you mind sharing what you found? On their point about the updated systematic review prepared for CDC... It's not clear which one they are talking about...

In addition to these anecdotes and the surveys, we also have more than 100 ME research exercise provocation studies that provide evidence, including objective evidence, of an abnormal response to exercise across multiple systems. Even in 2015, those studies were sufficient for the IOM to define...

I understand the point of view being expressed re criteria. I just disagree

You are assuming that there's a focus on one single issue but there's no evidence of that. Beyond that, I don't have anything further to add at this point.

I completely agree that poor trial design is a huge problem. But for me, patient selection is a critical part of trial design - that's exactly what defines "the group of people you are looking at." At this point, PEM is mandatory for a diagnosis of ME/CFS and using selection criteria that do...

This is not just my opinion. The IOM and NICE both require PEM for a diagnosis of ME/CFS. Yes, it may be useful to compare people with chronic fatigue (as in the example you gave) to people with ME/CFS. But the problem is when all of those people, regardless of what they have, are labelled...

Yes, it could be useful to study "different sorts of asthmatics..." The key there is they all have asthma. But we are talking about a group of "different sorts of chronic fatigue". IMO, that is no longer - and I think never was - an appropriate group to stuff ME/CFS into. Especially with what...

Playing devils advocate here - Would it be acceptable for a study of an asthma intervention to use any old criteria, including those that specifically do not require people to actually have asthma? Especially if that intervention to be tested was known to exacerbate the core symptom of asthma...

Do you happen to remember the rough date on this, @Trish