DecodeME in the media

Hoopoe said:
The impression is that they are keen to claim ME/CFS as their turf. They see the illness through a lens of depression and anxiety and what patients say can be ignored.
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And, it seems, large meticulous genetic studies can be ignored also. Facinating what it's possible to ignore if your faith in the almighty psychobehavioral paradigm is strong enough. Almost inspiring.
 
I’ve been trying to work out the strongest arguments against the criticism that participants were not diagnosed by a medical professional.

Here’s a recap of the criticism:

[Reuters] Scientists who were not involved in the study said using volunteers who self-reported chronic fatigue syndrome rather than restricting participation to those with a diagnosis from a medical professional somewhat weakened its conclusions. https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/
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[Carson SMC] Diagnosis was done by questionnaire and this has a significant error rate. The National Institute of Health in the US has suggested diagnostic error rates of around one third.
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bobbler said:
[bobbler's transcript of what Lucy Beresford said is in post #130 above] I think what people are very worried about with this particular piece of research is that I’m quite a lot of the people who were part of the study had actually self-reported this condition so they hadn’t necessarily had a formal diagnosis and that just unfortunately kind of dilutes the effect of this research.
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It’s true that DecodeME participants were not recruited through health professionals, but speculation that they did not have a formal diagnosis of ME/CFS is...purely speculative. I don’t think it is a strong response to say that cases were all diagnosed by a health professional, because we cannot verify that. We only know that they answered “Yes” to this question:
Have you been given a diagnosis of ME, CFS, ME/CFS or CFS/ME by a health professional?
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When people are objecting to self-report (ah, the irony), then countering with another self-report won't work.

I think the strongest response is something like:
  • Good-quality GWAS studies need huge numbers of participants in order to have high enough statistical power to detect robust associations that would be missed in smaller studies.
  • It would not have been possible to recruit 26K participants with ME/CFS indirectly through health professionals.
  • By recruiting directly, DecodeME could reach the number of participants they needed, but then they needed to make sure that they were reaching people who really did have ME/CFS as currently defined. So they took extra steps that other studies in ME/CFS have not taken.
  • DecodeME participants didn’t just report they had ME/CFS, they also reported that they had been diagnosed with it by a health professional, that they had post-exertional malaise and fulfilled either CCC or IOM criteria or both.
  • Over 5000 potential participants (5281) were excluded from DecodeME because they did not meet these criteria:
[From the preprint] After launch, 26,901 people (84% female) completed the online or paper participant entry questionnaire and consented to take part. Of these, 21,620 (85% female) met our study criteria of having a diagnosis of ME/CFS from a health professional, having post-exertional malaise as a symptom, and having symptoms consistent with Canadian Consensus and/or Institute of Medicine / National Academy of Medicine diagnostic criteria (5,26) (Supplementary Methods). We sent all cases a saliva DNA collection kit (Fig. 1A).
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A point should probably be added in there about whether GWAS studies in other diseases that have found robust associations have recruited directly or through health professionals. I don't have the knowledge of those studies to make the point, but others on here probably do. If studies with similar statistical power to DecodeME have managed to recruit through health professionals, then it would be worth explaining why this wasn't possible for ME/CFS in the UK.
 
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I’d add that the project very clearly did not disclose its criteria for exclusion. This caused a problem with reducing numbers for the GWAS but also with parts of the ME/CFS community because people were not being asked for saliva samples and they did not know why. This is key for the argument that participants were somehow gaming the system.

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A lot of participants also consented to access to medical records I think? So it may be possible to refute the claim by actually checking the percentages with a diagnosis there. But it would be a lot of work I suspect. Maybe it’s possible to do roughly with diagnostic codes but we know they’re inaccurate?

The level of detail was way beyond other studies or say the PACE trial and most importantly it was not open to bias or manipulation. The only way the ‘should have been done by medical professionals’ argument makes sense is if they wanted themselves to be the gatekeepers, which introduces bias.
 
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hotblack said:
The only way the ‘should have been done by medical professionals’ argument makes sense is if they wanted themselves to be the gatekeepers, which introduces bias.
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Yup, can’t do research on a group that’s only defined by certain people’s opinions in what’s essentially a black box process! Reporting having had an ME/CFS diagnosis by an HCP and ticking off the boxes in the CCC survey, is the best we can do (edit: in a study with this scale) without any biomarkers.
 
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Ariel said:
The reality is that he has kept changing what he is saying over the years - and claiming that this is what he was saying all along, when this is not the case.
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It is all marketing. His underlying belief about ME/CFS being a psycho-behavioural problem has not changed one bit, since his first comments on it in the formal literature back in the mid-1980s.

Don't listen to what Wessely claims to believe, look at what he actually does, very consistently.
 
Utsikt said:
Yup, can’t do research on a group that’s only defined by certain people’s opinions in what’s essentially a black box process! Reporting having had an ME/CFS diagnosis by an HCP and ticking off the boxes in the CCC survey, is the best we can do without any biomarkers.
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Indeed. It is annoying that such rigour is being ignored with empty arguments and in some ways it would be nice to have them corrected in reporting. But tbh for now I don’t think it’s the message people are hearing and I don’t think Chris and co should worry too much about it in their media appearances. Focus on their message as they have been doing such a great job of so far.
 
Need to point out these people are conflating self-reports of diagnosis of ME/CFS by a health professional with self-diagnosis of ME/CFS.

The impression given is that the patients are claiming self-diagnosis whereas this is not the inclusion criteria. Claims to the contrary are claims that the patients are lying about being officially diagnosed. That is actually what is being said. That is how I would respond. Either they don't understand the study design (or haven't bothered to look at it) or they are accusing the patients of lying.

I am not sure major outlets want to accuse the patients of lying? That is why this impression needs to be corrected. There is simply a conflation here.
 
Ariel said:
The impression given is that the patients are claiming self-diagnosis whereas this is not the inclusion criteria. Claims to the contrary are claims that the patients are lying about being officially diagnosed. That is actually what is being said. That is how I would respond. Either they don't understand the study design (or haven't bothered to look at it) or they are accusing the patients of lying.
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This is a very good point.
 
Re Newsweek, Simon W's own research, which uses Oxford criteria, shows that these broad criteria sweep up a lot of people with depression who do not meet even CDC 1994 criteria. (Reference: Eg his study, which is based CDC and Oxford criteria found no increase in the rate of CFS after UTIs in GP practice)
 
hotblack said:
Good point. It’s very different from the flexibility and humility of changing when information changes and admission of being wrong, which I think we would all welcome and which would serve everybody in this situation better. The desire to be ‘right’ and protect one’s ego is very common, being wrong and admitting failure can be hard. But it’s harmful for yourself and in cases like this for others too.
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sunk cost
 
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