DecodeME in the media

[V.R.T.]

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.

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.

 

[hotblack]

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.

Just like Parappa the Rapper “I gotta believe!”

 

[Kiristar]

That's a good question - are there any known GP allies who can be approached?

We really need a coalition of supportive Dr's to come together now. It feels like it's all too fragmented for anything good to happen atm.

 

[Evergreen]

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/

[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.

[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.

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?

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 ICC or IOM criteria.
• Over 5000 potential participants (5281) were excluded from DecodeME because they did not meet these criteria:

After launch, 26,901 people (84% female) completed the online or paper participant entry questionnaire and consented to take part. [From the preprint] 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).

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.