Criticisms of DecodeME - and responses to the criticisms

[Hutan]

Its a blessing and a curse. Its a ward against the "self diagnosis" accusations but since its not actually been done on the basis of CCC/International it wasn't sufficient anyway for inclusion, just purely there for the purpose of that one accusation. Its cost however is not making the original goal of 25k patients due to the lack of NHS diagnosis and its also meant the cohort of patients has inherited all the NHS bias around diagnosis, which in hindsight there are a lot of. I think it cost more than it gave but its done now and those biases are going to move forward in every use of this data.

This is about the requirement to have been diagnosed by a health professional.

Perhaps it reduced the number of participants. But, I don't think it is fair to criticise DecodeME for the resulting cohort 'inheriting all the NHS bias around diagnosis'. There were a lot of questionnaires to ensure that people met ME/CFS criteria. It was a belt and braces approach. Substantial effort was made to ensure the people labelled with ME/CFS did in fact have ME/CFS.

I don't think not requiring an NHS diagnosis of ME/CFS would have made the sample better. The bias that applies to the NHS diagnosis of people with ME/CFS is much the same as the bias that applies to whether a person self-diagnoses with ME/CFS.

 

[Andy]

In fact, as far as I know there aren't even 25K people in the UK with a clinical diagnosis of ME/CFS, entirely by choice.

To repeat, the actual fact is that 26k participants confirmed a clinical diagnosis.

But it did not happen

See above.

 

[MSEsperanza]

Trial By Error: DecodeME Pre-Print Reports Eight “Genetic Signals” Related to Immune Function and Nervous System

Good to see you covering the first findings too, @dave30th

From your blog article:

"Luckily, the SMC also invited two less biased observers to comment. This balance is certainly an improvement."

I think the forth commenter also deserves a mention? -- even if she didn't declare her potential COI and it's not clear to me what her expertise is with regard to the topic. But I read it as contradictory to Carson's venting:

Dr Amy Mason, Research Associate, British Heart Foundation Cardiovascular Epidemiology Unit, University of Cambridge, said:

“This is a well-designed study with large numbers and careful case selection. It is particularly notable for how well it has recruited ME/CFS patients, who are usually hard to identify in existing national biobanks. The results identify specific genetic areas linked to developing ME/CFS. This is solid genetic evidence pointing to potential biological pathways that cause ME/CFS, with multiple new targets for future study.

She also mentions limitations but then goes on:

“Interestingly they find no evidence that depression and ME/CFS have shared genetic links, but do find evidence of both pain and the immune system being involved. This fits with what patients often report and helps shift the narrative; ME/CFS is not psychosomatic but linked to measurable differences in genes affecting pain and immunity.

And concludes:

This study identifies some key potential areas for future study. It lays the groundwork for other researchers and pharmaceutical companies to follow, by identifying the areas to look at both for understanding the causes of ME/CFS and for developing new drugs to treat it.”

 

[Joan Crawford]

I've now finished my research following that Sky Press Review last night and the Reuters piece on DecodeME.


This is from Lucy Beresfords's website: https://www.lucyberesford.com/psychotherapywalkingtherapy



Trigger words used here 'anxiety' and 'burnout'. Burnout still being used around the same time as 'Yuppie Flu' in the mid 1980s.

Further digging unearthed this paper epublished April 2010:

Two sides of the same coin? On the history and phenomenology of chronic fatigue and burnout. Leone SS, Wessely S, Huibers MJ, Knottnerus JA, Kant I. Psychol Health. 2011 Apr;26(4):449-64. doi: 10.1080/08870440903494191. Epub 2010 Apr 29. PMID: 20437294.

Full PDF in researchgate:
https://www.researchgate.net/public..._phenomenology_of_chronic_fatigue_and_burnout

ABSTRACT



Then add in Reuters article: https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/

Note sole use of Chronic Fatigue Syndrome


Add to Carson's comment on SMC, online before the press review at 11.00 p.m. : https://www.sciencemediacentre.org/...deme-genome-wide-association-study-of-me-cfs/

There's the bias in her commentary last night coming through. @Joan Crawford


Edit to tidy up research reference.

Pretty hard to confuse burnout from ME. While there are a few overlapping symptoms they are far from similar.

Thanks for sharing that Wessely et al paper, I'd not seen that. More evidence of the 'pop it all in one fatigue pile' failure.

 

[Joan Crawford]

Is there any evidence about anxiety impeding recovery? I'm not aware of that ever being studied, let alone objectively.

I think it is wot the man simply believes. He's so invested in himself being right that he cannot countenance any other possibility. He's really looking foolish.

As him and his mates have not demonstrated recovery, one wonders how he picks this factor out to claim it impedes recovery over other possible explanations. Pick and mix at will. No rationale other that belief.

Most plausible and simpler explanation is the continuation of debilitating symptoms which impedes recovery.... which he could assess by simply speaking to patients. But that seems to be lost on him.

 

[hotblack]

I think it is wot the man simply believes. He's so invested in himself being right that he cannot countenance any other possibility. He's really looking foolish.

It’s entirely about that isn’t it, what they’ve emotionally invested in this idea. Because if you’ve got that much of a reputation, the positions they have, isn’t it wiser to just admit what is in front of you and move on? Why bang this drum, it makes no sense. It also shows a real inflexibility which is exactly what they’ve accused us of. Some would almost say it’s projection…

 

[Joan Crawford]

I recall some research showing previous depression appearing to precede ME/CFS. The problem was it often takes years to get diagnosed. So in the years before diagnosis, patients may appear depressed either due to the physical symptoms of ME/CFS having some similarity to depression or because they are distressed from struggling with a disabling chronic illness for which they are not getting support and accommodations at work, school, home, etc.

Experienced clinicians like Wessely and White should have known diagnosis often took years (particularly in the 1990s) and discussed it but either didn’t at all or maybe only in passing.

I suspect that many people with ME could have anxiety and depression on their primary care records as the majority of people who have ever seen a GP when a bit distressed or tearful will do. It doesn't mean that a thorough psychological assessment has taken place it is simply GP short hand for increased distress.

If Wessely et al used a large data set from primary care to explore this then there will be a correlational finding but of dubious quality and meaning.

 

[Joan Crawford]

It’s entirely about that isn’t it, what they’ve emotionally invested in this idea. Because if you’ve got that much of a reputation, the positions they have, isn’t it wiser to just admit what is in front of you and move on? Why bang this drum, it makes no sense. It also shows a real inflexibility which is exactly what they’ve accused us of. Some would almost say it’s projection…

He's as loss averse and biased as anyone. Perhaps amplified by an echo chamber around him. And a somewhat sneering attitude towards those that might think differently to him. Even if the quality of the evidence presented is on a different scale to what he simply thinks and believes.

As a psychiatrist you'd have thought he'd be aware that people in general can hold all sorts of things in their mind that are clearly objectively not true.

 

[Midnattsol]

I suspect that many people with ME could have anxiety and depression on their primary care records as the majority of people who have ever seen a GP when a bit distressed or tearful will do. It doesn't mean that a thorough psychological assessment has taken place it is simply GP short hand for increased distress.

Something I wish doctors would pay more attention to, instead of complaining how «youths today say they are anxious when they mean nervous, depressed when they mean sad» etc and that people supposedly use «clinical labels» just because. As if they are any better. Then again obviously I think all doctors can’t tell a food intolerance from an allergy as I met an intensive care doc mistook lactose for milk protein when explaining that a product was safe for someone with milk allergies. Maybe he was influenced by media where someone used the wrong term and he just had to go along with it.

 

[InitialConditions]

BPS adding community notes to X posts .
Suspected as being Carson but plenty other candidates .
I can't see them ( seemingly you need to be verified )
Essentially non replication being evidence if false positives

It wasn't Carson or anyone like that. It was a guy called Siebe on X (https://x.com/PatientPersists) who had a tweet that was essentially identical to the Community Note, but he deleted his Community Note and his original tweet, then corrected himself.

 

[Ariel]

I think it is wot the man simply believes. He's so invested in himself being right that he cannot countenance any other possibility. He's really looking foolish.

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. And you see the same pattern, over again. His "views" are a moving target, both currently and in the ever-changing re-telling of the past. To me, that is evidence of bad faith.

It's the same with other people in this story. If you keep saying different things and say you were saying them all along, how can you say you really believe those things? I don't think these people are delusional in this respect. Yes, they are protecting their reputations. I don't think they care about "the facts", or evidence. It's not that they are fooling themselves - if that were the case they would not be able to carry on their agenda so convincingly. It's all politics.

 

[hotblack]

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.

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.

 

[boolybooly]

If you type in "decode me results" to google, the 'top stories' section gives the SMC top billing, I wonder if that is paid placement?

*SMC link warning!!*
"expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS"

expert reaction to unpublished preprint on the DecodeME genome-wide association study of ME/CFS | Science Media Centre

Not surprised but slightly disgusted by the bare faced audacity of SMC's apparent volte-face in presenting valid interpretations of Decode ME results as opposed to the usual BPS anti-science handwaving favouring CBT. "Sir" Simon Wessely is evidently still trying to position his SMC brand in the mainstream in the mercenary tradition of all things King's.

I don't think we should forget how the SMC favoured BPS and served the propaganda requirements of those who didn't want to recognise the diagnosis of ME because of what it will cost them in the short term, who were willing to pay to promote discredited research and treatments and thereby oppose decision making about research which would favour more accurate and credible diagnosis. They are still out there.

Consequently I think we should consider better diagnosis of ME (and longcovid) a high priority and along with this a more accurate concept of ME in the minds of the medical profession to replace previously promoted pejorative stereotypes.

As Prof Chris Ponting (who truly deserves a knighthood) mentioned to the APPG, ME research deserves investment.

This is true but we should watch out for who is trying to get a share of this and what kind of results their work will bring. I think with the Decode ME results the ground has shifted in our favour but the battle for justice is still on, just as it ever was.

 

[Simon M]

They seem to have a gameplan in place. I think it will be hard to counter until these findings are built upon sadly.

Vague assertions won't make the genetic evidence go away. I would like to see the evidence they have on depression and anxiety. I'm not aware of any that's any good.

The suggestion that it was going to be a long haul struck me as slightly wishful thinking, because then new evidence undermines the BPS model.

I don't think the comparison with psychiatric illnesses is that relevant , because they tend to have broad, complex signals. I understand that depression has a substantial genetic overlap with endocrine illnesses, for instance.

So far, I've been struck by how little the psychosocial community has come up with in response to DecodeME findings. I suspect most people reading the Newsweek article will see this is a major development in understanding the illness, and not that nothing much has changed.

 

[V.R.T.]

The suggestion that it was going to be a long haul struck me as slightly wishful thinking, because then new evidence undermines challenges the BPS model.

Yes I think they are trying to hold back the tide by painting this study as much more insignificant than it is, saying 'well we are still light years away from having any idea what is causing this' etc...

 

[Eleanor]

So far, I've been struck by how little the psychosocial community has come up with in response to DecodeME findings.

My guess is they prepared a media response strategy based on the assumption that genetic linkages to depression and anxiety would be found. Without that, they have to fall back on pretending the whole thing is insignificant.

 

[hotblack]

So far, I've been struck by how little the psychosocial community has come up with in response to DecodeME findings. I suspect most people reading the news week article will see this is a major development and understanding the illness, not nothing much has changed).

Definitely. It’s something we’re aware of but the message that most of the public are hearing seems clear: major development in disease I may have vaguely heard about or know someone who has it but haven’t really understood much about.

 

[Hoopoe]

My guess is they prepared a media response strategy based on the assumption that genetic linkages to depression and anxiety would be found. Without that, they have to fall back on pretending the whole thing is insignificant.

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.

 

[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!”