Criticisms of DecodeME - and responses to the criticisms

Being covered on Sky news now. Only the Psychologist on the panel was asked to comment. She stated that what people are pointing out is that many of the participants in the study had 'self reported diagnosis'. Am I correct in recalling that only those with a medically confirmed diagnosis were invited to provide samples, or am I confused? I do remember that I had to wait to see if I would be called to provide a sample.
Didn't see it. Who did they interview?

Why would a psychologist be commenting on a genetics study?

Apart from perhaps to note the psychological benefit which will likely result due to decent evidence in a rigorous, quality study which helps to explain their patients' suffering. This will be a huge positive boost for patients and their carers/family/friends who have often felt invalidated and isolated, sometimes for decades. You'd think they'd talk about that.
 
Didn't see it. Who did they interview?

Why would a psychologist be commenting on a genetics study?

Apart from perhaps to note the psychological benefit which will likely result due to decent evidence in a rigorous, quality study which helps to explain their patients' suffering. This will be a huge positive boost for patients and their carers/family/friends who have often felt invalidated and isolated, sometimes for decades. You'd think they'd talk about that.
Probably repeating Carson fron his SMC comment that got it wrong about self diagnosis. Thus is misinformation spread.
 
Didn't see it. Who did they interview?

Why would a psychologist be commenting on a genetics study?

Apart from perhaps to note the psychological benefit which will likely result due to decent evidence in a rigorous, quality study which helps to explain their patients' suffering. This will be a huge positive boost for patients and their carers/family/friends who have often felt invalidated and isolated, sometimes for decades. You'd think they'd talk about that.
She's one of their usual contributors in their 10.30 p.m. tomorrow newspaper review every night, not brought in specially. For the life of me I can't remember her name, even though I watched the repeat specifically to make a note of it!

Here's where I think she got the impression from https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/

The other panelist was a sky reporter and it may be why he didn't comment on the the Guardian article which they were reviewing. https://www.theguardian.com/society/2025/aug/06/genes-me-chronic-fatigue-syndrome
 
Looks like some great reporting, a few hiccups and the usual suspects trying desperately to remain relevant. If only they’d shown such skepticism and caution around PACE and the theories they’ve been pushing for decades.

Can’t imagine why there is such a difference in tone. I’m sure there’s no conflict of interests or reputations on the line. /s

They should let go of these dysfunctional beliefs they have invested so much of their careers and professional reputations in. These were of course real but are not fixed unalterable things and their unhelpful attachment and coping behaviours are reversible by their own efforts if they choose to do so. We should do all we can to support them in this and give them a little bit of hope that they need so they can move on and have happier, more fulfilling and productive lives.

:D
 
@Joan Crawford I've found the sky press review from last night on Youtube - it was Psychotherapist and Broadcaster Lucy Beresford - https://www.lucyberesford.com/

Only the first half of last nights extended 1hr show (focussing on Ukraine and Gaza) is available on their Youtube. The second half hour of the programme covering the rest of the press reports which included the Guardian article isn't on Youtube.
 
Didn't see it. Who did they interview?

Why would a psychologist be commenting on a genetics study?

Apart from perhaps to note the psychological benefit which will likely result due to decent evidence in a rigorous, quality study which helps to explain their patients' suffering. This will be a huge positive boost for patients and their carers/family/friends who have often felt invalidated and isolated, sometimes for decades. You'd think they'd talk about that.
Yes, this.
I was taken aback at my emotional reaction to the validation and my prosaic hubby said also felt a similar reaction. I feel I can hold my head higher in Dr's appointments now.
 
Thanks for clarifying that @Simon M. I went in search the possible source of her comments (she was a pscyhotherapist, not psychologist as I incorrectly stated. I think this is where she got her information from; Reuters.

https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/ heading and source explains it all.



Edited to change msn link to direct lin

Thanks for clarifying that @Simon M. I went in search the possible source of her comments (she was a pscyhotherapist, not psychologist as I incorrectly stated. I think this is where she got her information from; Reuters.

https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/ heading and source explains it all.



Edited to change msn link to direct link.
The is not accurate and Reuters should print a correction; particularly bad from a news agency. Is anyone up to contacting them?
 
Being covered on Sky news now. Only the Psychologist on the panel was asked to comment. She stated that what people are pointing out is that many of the participants in the study had 'self reported diagnosis'. Am I correct in recalling that only those with a medically confirmed diagnosis were invited to provide samples, or am I confused? I do remember that I had to wait to see if I would be called to provide a sample.
I thought the sky news items were very strange for the few hours when it was all just released and other channels were covering me/cfs it appeared like they’d jammed in items on Prince Harry instead as if someone might have made a last minute decision to use that to keep the content going.

Anyway as someone who has watched that channel a lot or had it on mute in background for company tye thing over the years it seemed out of kilter
 
She's one of their usual contributors in their 10.30 p.m. tomorrow newspaper review every night, not brought in specially. For the life of me I can't remember her name, even though I watched the repeat specifically to make a note of it!

Here's where I think she got the impression from https://www.reuters.com/business/he...ked-with-chronic-fatigue-syndrome-2025-08-06/

The other panelist was a sky reporter and it may be why he didn't comment on the the Guardian article which they were reviewing. https://www.theguardian.com/society/2025/aug/06/genes-me-chronic-fatigue-syndrome
Ok I’ve got the 11.30 recording open (no 10.30 press preview as it was Trumps speech instead) - Lucy Beresford (the other one on press preview is Adam Boulton who was a Sky reported and presenter for years and just in last few weeks has started doing this guest spot every so often).

Yes she’s the ‘broadcaster and psychotherapist’ they’ve had quite a bit over the years on the press preview (I’ve never worked out why , not that she’s bad but she wasn’t famous before as far as I’m aware so I can’t name the connection she has that meant she is often on this press preview. )

They did actually include ‘study finds genes that could raise risk of ME’ after the break in this. Presenter did a good read out about ‘scientists have found robust evidence that genes increase someone’s chances of developing M.E., a mysterious and debilitatinv illness that has been dismissed and neglected for decades by many in the medical community’ then ‘I remember it used to be called yuppie flu driven by psychology or driven by laziness some even suggested so this is redemption for those who fought for years suggesting they had ME when they weren’t believed’

Beresford: ‘yes it’s a tricky one you’re right there was some sense in which people assumed that it might be psychological in etio erm orientation , but the original of it is not necessarily changed by this even though they are saying that there might be some genetic code as we know that the etiology of a condition or a disease might have other factors at pleay. You could easily have the gene for something and not then go onto develop the disease and 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. So what people are talking or calling for is maybe a bigger study maybe a study of people in other countries not just developed countries but less developed countries to kind of of see if you can replicate the results of that.’

So yes , Lucy Beresford definitely for some reason has been primed with misinformation (which might be her own).

Host ‘yes that’s interesting. It’s the university of Edinburgh who suggested that people who present with chronic fatigue syndrome had eight areas of genetic code that are different which is interesting. They also pointed out the condition is believed to affect nearly 67m people worldwide. I know it’s been speculated it could be post viral like long covid for example or but as you suggested maybe they you know continue working to find out more about chronic fatigue syndrome’. And seemed a bit awkward at that point - I don’t know whether because she was taken off guard by her (Lucy’s spiel) or that was something the programme editing agreed with

It was interesting that adam boulton didn’t speak on it as with many of their items both contributors do, but his focus is political commentator so maybe that’s why they let Lucy dominate.

She, Lucy, had been pretty opinionated on other tax stuff too tho earlier on in programme saying things like ‘they don’t understand much about human psychology and how they change their behaviour on things like non dom or company directors that can move abroad, and all youngsters are scared they’ll never get a job because of ‘the job tax’’ her invention to call the NI on employers ‘job tax’ several times in a small segment. So again on that she’s either become more emboldened over the years if speaking her mind (or brought in for it) I don’t know if they are ever given direction in what to say on this particular show.

@Joan Crawford in case this answers any of your perfectly reasonable questions. I’ve never fully known why she was on there over the years, so missed the connection (most others on there are journo of some kind or allied to politics )
 
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Yes, that's it. Good job transcribing that, I tried to last night but just wasn't able to.

I noticed that about Adam Boulton but you're probably right, and also sometimes they want to cover a news story but don't have time for comments from both on the panel, and this was an unusually extended press review. In view of that, the fact they covered it all is pretty good.

I also got the impression that the host may have not been expecting Lucy's speil.
I'm hoping that I'm allowed to say this but sadly, as someone with a BSc psychology where I wasn't just sucking up stuff and was covering the full breadth of what the subject is rather than just therapy theories, she reminded me of too many that I have met over the years who have got themselves 'jobs' in an area calling itself psych something and just spout sing-song learned things by rote from whoever without even critically analysing what comes out of their mouth.

I've been utterly shocked over the years as I myself have had to strategically shut up to these people wondering how they got themselves the power they had, but I guess the not being a questioning type and being happy to spout unpleasant stuff and blindly pretending to themselves its 'help' is part of that. Some of these people are ones that have been 'paid for' ie not NHS or whatnot, others IAPT, academic.

So she's quite an interesting representation of what I've seen in quite a few sadly if it is something that she believes that she has either had someone she's in with priming her and pointing her to a certain view or she's actively sought out some strange niche ideas on this particular article because those niche places are where she looks for said information. I say niche because we've quite a good idea of the main coverage and facts, and so far what it's one SMC 'responder' who doesn't work in ME/CFS (but is trying to create an alt-diagnosis and insists on calling it CFS/ME as a wind-up anyway).

I haven't read the Reuters one yet and whether that covers the rumour she is putting out of 'people' - which I'd be intrigued which in-crowd she is talking about there - deciding the weapon of inference they are going to use is the idea its somehow needing a replication in a non-developed country. It's very childish. And shocking that she's repeating the 'self-diagnosed' or , as I haven't seen that term in that specificity used elsewhere she has made it up herself as a rumour or someone else has that she is just repeating.

As someone I don't think has done research herself, so certainly wouldn't herself know about how something had to have a study based in Africa 'replicating it' to be true, it's all pretty obscure. I doubt she has ever read many studies that talk about replication from the non-developed world and PACE certainly wasn't as far as I'm aware over the decades it was used to dominate the regime for pwme? Or have a missed a trial done in .. well what would count as the 'non-developed' (don't we call it developing, and aren't there specific categories within that too now) world now anyway?

And it wouldn't have taken her more than a few minutes to have checked that before she said the word 'self-diagnosed' that was the accurate term even if she was wanting to throw shade.

I don't know whether its 'minion-y' or self-kiddery in seeking out with some effort some opposite stuff in order to appease one's set position and cognitive dissonance etc rather than being able to take something that has been coming a long time but debunks their internal beliefs they want to hold onto. But it is sure interesting to watch when not in the usual situation that I've been in

If someone is happy to do that as a broadcaster without checking facts then maybe you would hope that watching become aware how quickly made and unchecked opinions might be used by such people in their other work and yes I'm saying it because even though they get away with it they know they shouldn't be providing misinformation on a disease or piece of research so I don't see that I should assume more care or attention of what they are pushing in a private setting whilst doing psychotherapy shed bothering to check facts before pushing something that might be harmful based on arrogance-ignorance is any more considered or checked than what they will spread via a broadcast.
 
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If someone is happy to do that as a broadcaster without checking facts then maybe you would hope that watching become aware how quickly made and unchecked opinions might be used by such people in their other work and yes I'm saying it because even though they get away with it they know they shouldn't be providing misinformation on a disease or piece of research so I don't see that I should assume more care or attention of what they are pushing in a private setting is any more considered or checked than what they will spread via a broadcast.

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

I work 1-to-1 with clients all over the world, all grappling with some aspect of their life, from anxiety, burnout, heartbreak, depression, coping with fame or a leadership role, to sex or relationship issues.

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

Burnout and chronic fatigue syndrome (CFS) are two fatigue syndromes which have developed largely independently from each other, yet whose similarities in symptoms can be a source of confusion. We aim to explore the phenomenology of burnout and CFS in a historical context as this may provide some insight into the links and relationship between these conditions. A narrative review based on literature in the fields of history, social science and medicine. The origins of CFS lie within medicine, whereas burnout developed in a psychological setting. As well as symptoms, burnout and CFS also share similar themes such as an overload process triggering illness onset, the need for restoration of depleted energy, external causal attributions and the characteristics of people suffering from these illnesses. However, these themes are expressed in either psychological or medical terms according to the historical background. Despite their similarities, there have been few direct comparisons of the two concepts. Culture, illness perceptions and accountability are important issues in both conditions and could contribute to their differences. Comparing burnout and CFS within one sample frame, thus looking beyond the psychology/medicine divide, could be a useful first step towards understanding their relationship.

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
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. They called for larger studies to replicate the results.

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.
 
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There were two parts to this. The study was of people who reported they had a diagnosis from a health professional. The study screening questionnaire also asked people about their symptoms. Only people who met the criteria for either IOM or Canadian consensus definitions were invited to provide DNA samples. I'm not sure, but I think about 85% of people who signed up saying they had a diagnosis from a health professional also met the criteria.

DecodeME included a question on postexertional malaise that went beyond asking about simple exertion intolerance stressing the need for an extending period of symptom flare. Though, as this is a media thread, I don't want to start an extended debate about that here.

But I want to clarify this isn't self diagnosis, it's not even simply self report of a medical diagnosis. It won't be perfect, but I think it will be pretty good.
I’ve posted a response to this on the preprint thread as it’s about the study design and interpretation of the data: https://www.s4me.info/threads/initi...codeme-collaboration.45490/page-8#post-630925
 
Thanks, I was able to read this on an internet archive but don't have an active subscription. The version I read had just one comment from a 'Mister mister', the first comment apparently, and it was woefully ignorant and in need of rebuffing, maintaining a psychological origin for the condition along with a jumble of other medical conditions. Does anyone have access? I assume there must be more comments now.
 
Thanks, I was able to read this on an internet archive but don't have an active subscription. The version I read had just one comment from a 'Mister mister', the first comment apparently, and it was woefully ignorant and in need of rebuffing, maintaining a psychological origin for the condition along with a jumble of other medical conditions. Does anyone have access? I assume there must be more comments now.
A trick I discovered is that if you google an FT headline, in this case “Chronic fatigue patients have different genes, study finds”, and click on the FT link from the Google search results, you can read the article for free without signing in. NB if you then copy and paste the URL of the FT page it won’t work.

I’ve just read the article. Some of the comments below the article are shockingly ignorant and offensive. It just shows what we’re up against, how important this research is, and how important it is to get the messaging right.
 
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The main lines of attack are now becoming clear:

- this research was irretrievably biased by the involvement of biased activist patients
- participants didn’t have HCP-diagnosed ME/CFS, they self-selected by questionnaire
- associations between ME/CFS and certain genetic regions could be as a result of genes in those regions causing psychological maladjustment, and can’t necessarily be linked to meaningful immune or neurological dysfunction
- even if there is a physiological component, that is true of other psychological and psychiatric illnesses because of mind-body links, and wider evidence still suggests this is a psychological illness requiring psychological treatments
- no major observable abnormalities of physiology mean this must be a psychological problem whatever gene correlations there may be.

So, it’s more of that “scientific illiteracy” I was talking about upthread - when certain scientists seem mysteriously unable to comprehend plain English when it undermines their interests.

AKA the well known phenomenon that “It is difficult to get a man to understand something, when his salary depends on his not understanding it.”
 
associations between ME/CFS and certain genetic regions could be as a result of genes in those regions causing psychological maladjustment, and can’t necessarily be linked to meaningful immune or neurological dysfunction
That’s just repeating the same dualist dogma about how thoughts somehow exists independently of the physical processes, but are simultaneously able to influence physical processes.

They can’t have their cake and eat it too.
 
The main lines of attack are now becoming clear:

- this research was irretrievably biased by the involvement of biased activist patients
- participants didn’t have HCP-diagnosed ME/CFS, they self-selected by questionnaire
- associations between ME/CFS and certain genetic regions could be as a result of genes in those regions causing psychological maladjustment, and can’t necessarily be linked to meaningful immune or neurological dysfunction
- even if there is a physiological component, that is true of other psychological and psychiatric illnesses because of mind-body links, and wider evidence still suggests this is a psychological illness requiring psychological treatments
- no major observable abnormalities of physiology mean this must be a psychological problem whatever gene correlations there may be.

So, it’s more of that “scientific illiteracy” I was talking about upthread - when certain scientists seem mysteriously unable to comprehend plain English when it undermines their interests.

AKA the well known phenomenon that “It is difficult to get a man to understand something, when his salary depends on his not understanding it.”

The dogs bark, but the caravan moves on.
 
Sir Simon Wessely, a professor of psychological medicine at King's College London told Newsweek that there is already "ample evidence that ME/CFS is not the same as depression, but that previous depression increases the risk of developing ME/CFS, which needs explaining, and I would be surprised if genetics does not play some part in this."

He said that while it is understood ME/CFS is not an anxiety disorder, "anxiety can impede recovery."

"The fact that ME/CFS involves both excessive physical and mental fatigue and fatiguability after both physical and mental exertion already tells us that the causes are most likely to be central, i.e., the brain, rather than peripheral—these new findings reinforce that, but we are still a long way from knowing why," he said.

"Unravelling multigenic and multi factorial conditions such as ME/CFS is going to be a long haul, as those who have been researching the genetics of psychiatric disorders have already found out," he added.
:sick::emoji_rage: They seem to have a gameplan in place. I think it will be hard to counter until these findings are built upon sadly.
 
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