DecodeME in the media

[hotblack]

ScienceAlert: 'Massive Study Links 8 Genetic Signals to Chronic Fatigue Syndrome''

"For decades people with ME have asked to be heard, and now science is catching up."'

This seems pretty fair and well edited. The way they have pieced this together is quite entertaining with some selective quoting used to skip the more questionable claims by certain people…

 

[Yann04]

This seems pretty fair and well edited. The way they have pieced this together is quite entertaining with some selective quoting used to skip the more questionable claims by certain people…

Yes. The way they took Carson was very well done.

Neuropsychiatrist Alan Carson from the University of Edinburgh, who was not involved in the study, says it is "by someway the largest study ever conducted on genetics of CFS/ME."

DecodeME's analysis brought together more than 16,000 patients, most of whom are female and of European descent. The criteria for diagnosis was stringent so that only the most clear-cut cases were included.

 

[Binkie4]

Has anyone posted from the Times today, print copy p 17
" Leading scientist blames medical misogyny for lack of ME research"

https://www.thetimes.com/uk/scotland/article/chris-ponting-misogyny-me-research-c09hp0hfg ( online copy)

Please delete if already posted. I'm not able to read today - crashed.

I'm sure Chris will know about the history of our illness but it will need addressing in the right way so not straightforward.

edit: posted for information. Unable to continue discussion.

 

[Amw66]

Statement from BACME: https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-27#post-631515



Surprisingly good!

BACME see which way the wind is blowing- to say otherwise would be to court irrelevance

 

[Maat]

I've gone through the last few pages of comments mainly focussing on the Reuters and Newsweek media reports with particular regard to Wessely's response regarding anxiety and depression, and genetic results.

In the forefront of my mind is the current 56 day period for DHSC to respond to the new Prevention of Future Deaths Report following the death of Sarah Lewis who died a year ago today - Severe ME Awareness Day. It also flags up the weak Final Delivery Plan and my concerns I have about the NIHR HERITAGE plan.

In all media reports, Prof Chris Ponting and others have vigorously stressed that biomedical research in ME/CFS is way behind other diseases, the need for urgent 'laser like' focus on the clues which DecodeME point to, and urgent action and significant funding for it.

The only seriously negative voices about the pre-print DecodesME initial results, and the important next steps needed is Carson (in the SMC), un-named scientists in the Reuters article, and Wessely in the Newsweek article.

This won't be any surprise to pwME as the pages in this thread illustrate.

Wessely is - and Jonathan also suggests, talking publicly to his fellow BPS people - but also other audiences - not just patients. A fact which we all know has been a well used tactic in media interviews, effectively used by him and others when addressing ME/CFS for decades.

Bearing this in mind, of most concern to me is the fact that the Newsweek article refers to Wessely as only a 'Professor of Psychological Medicine' at King's College, he is also :

1. a non executive NHS England Board member since 2023 and his 3 term there will expire in 2026. He held that position when NHSEngland received the Prevention of Future Deaths Report in respect of Maeve Boothby-O'Neill.
2. Emeritus Senior Investigator at the NIHR.
3. He is a fellow of the Royal College of Physicians, Royal College of Psychiatrists and Academy of Medical Sciences.
4. In 2021 he became a Fellow of the Royal Society.
5. His is the first ever Regius Chair to be appointed at King's College London, and the first Regius Chair of Psychiatry in the United Kingdom.
6. He established the King’s Centre for Military Health Research in 1996, and remains the Co-director.
7. Since 2013 has been the Director of the PHE NIHR Health Protection Unit for Emergency Response and Preparedness, which has been very active during the COVID-19 crisis.
8. He is a Past President of the Royal College of Psychiatrists and the Royal Society of Medicine
9. Long term adviser to government departments.

These are the multiple organisations and public bodies he is speaking to. At the bottom of that list is people with ME/CFS and their families.

I've pulled together some thread comments to highlight why I think we should not merely brush the media comments off, and suggest what areas in the immediate future these will no doubt impact, such as implementation of the Final Delivery Plan (such as it is) and the NIHR HERITAGE programme into 'existing service', creating an NSF and educational materials. So as not to clog up the thread I've put in a spoiler.

Spoiler: Newsweek and Reuter's Article comments - why they matter.

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.

I specifically excluded the reference to 'depression' in Beresford's website as I wanted to wait and see how any media responses would deal with 'anxiety' and depression separately. Bearing in mind the recent thread on the MS research on the forum., and the recent research into different forms of fatigue affecting certain types of Cancer patients. Can't look for forum links at the moment.

Both these patients groups are treated in the Long term fatigue clinics 'existing services'.

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.”

My bold emphasis in the comment above is not only to protect the field of treatment in ME/CFS, because it should be remembered that:

• not only would he, as part of NHSE, been a recipient of the PFD Report from Maeve, (NHSE was not a recipient of the PFD eport for Sarah Lewis which has to be responded to the Cororner by 2 September 2025), but the DHSC was , but is also
• Emeritus Senior Investigator at the NIHR and is highly likely to be involved in preparing the National Service Framework for ME/CFS which will likely also now include Post Covid 19 Syndrome (Long Covid) and producing educational materials for the 'existing services'.

ETA2: Newsweek should print a clarification on Wessley's role in the story. He is involved, not some random observer or Professor of psychiatry. The claim that anxiety can impede recovery is also baseless and irresponsible speculation. Would they print this for another illness? I am not able to email them at present but I would if I was more able.

Yes, the impact of his various positions should be made very clear, particularly in view of Prof Chris Ponting's comments about 15 years late in
research, anxiety and depression etc. and those of Prof Anthony Komaroff in the article.

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

I'm not aware of any but there has long been research into Anxiety, Depression and Personality type D as predictors of disease severity?

Is personality type D assessment, being used as a mental health predictor of disease severity being excluded from the consent process on the grounds of ‘therapuetic exception’?

Lack of informed consent is the epitome of medical gaslighting unique to ME/CFS for decades, because it confirms beyond reasonable doubt that ME/CFS was, still is, and will continue to be viewed as PRIMARILY a mental health condition in the BPS, re-framed as mind-body, (on the surface masking the psychiatric emphasis on psychology confirming why it remains in the 2025 Kumar and Clarke medical textbook under mental health services and liaison psychiatry).

It contributes significantly to the harm caused by ‘existing treatment’ paradigm – which ignores the 2021 NICE Guideline ng206 - raised repeatedly over decades in patient safety concerns, and deaths.

It is this existing treatment paradigm which is to be investigated under the NIHR HERITAGE progamme which will include the creation of a National Service Framework and educational materials.

The 2021 NICE Guideline ng206 limits CBT to help with anxiety and depression, if requested by the Patient. THIS is the core of the issue with existing treatment where all existing services include the following as mandatory in it's 'pragmatic rehabilitation' of ALL levels of severerity of ME/CFS., applied at progressing degrees of intensity as severity increases, i.e. sectioning. It is the entire basis on which treatment for ME/CFS has always been framed.

Cardiovascular disease also includes long term fatigue, where suggestions to Personality Type D as a predictor of adverse outcomes has long been drawn.

For example during the same 15 year period Chris Ponting talks about, while CBT ME/CFS specific, Activity Management and GET comprised the entire treatment regime, alongside standard medical care for ME/CFS; this was going on in connection with cardiovascular research:



Published in Psychology Today on 7 August 2025 - Personality, Mental Health, and the Heart: It's a Puzzle | Psychology Today

Hopefully, by striving to understand the inconsistent results of efforts to address heart disease by modifying negative affectivity and mental health problems, we may gain a clearer insight into which approaches are most successful.​

Published in August 2011 - Personality type D and vulnerability to adverse outcomes in heart disease August 2011: https://www.ccjm.org/content/ccjom/78/8_suppl_1/S13.full.pd Authors JOHAN DENOLLET, PhD CoRPS–Center of Research on Psychology in Somatic diseases, Tilburg University, Tilburg, The Netherlands; Department of Cardiology, Antwerp University Hospital, Antwerp, Belgium VIVIANE M. CONRAADS, MD, PhD Department of Cardiology, Antwerp University Hospital, Antwerp, Belgium

CLINICAL IMPLICATIONS OF TYPE D The findings from type D research have a number of clinical implications. Type D is associated with an increased risk of adverse events,23 chronic distress,35–38 and suicidal ideation.59 Type D may also have an adverse effect on the outcome of invasive treatment.​

Regarding the DSM-IV classification by the American Psychiatric Association,(61) type D qualifies for the diagnosis “psychological factors affecting medical condition” (Section 316).​

At present, no clinical trial [connected with cardiovascular patients] has examined whether intervention for distress among type D patients alters their risk for adverse events. Nevertheless, some have argued that it is plausible for type D patients to learn new strategies to reduce their level of general distress. Previous research with patients experiencing symptoms like those of type D patients suggests that psychotherapy, social skills training, stress management, and relaxation training may reduce stress in these patients and improve their ability to express their emotions to others. Others have suggested that stress management training, including communication skills and problem-solving, may further improve the risk profi le and health in cardiac patients.​

I just hear "but, but, but, but"

However unfortunately you are right that his dirty sophism BS won't be seen as empty one-liners like it is by those who want to hear it.

In that Newsweek article, it was great that Chris was quoted as saying ME/CFS is often misdiagnosed as depression. His two talking points there were very good.



Anyone paying attention would then note that those misdiagnoses are likely to precede a diagnosis of ME/CFS, rather than previous depression increasing the risk
of developing ME/CFS.

Therefore, 'anxiety impedes recovery' can only mean that without CBT as a mandatory part of treatment - e.g. instruction to ignore NICE Guideline ng206 - severity increases, and worse, due to patient's personality type alone, and not because of lack of biomedical and genetic research.

Given that there has been a further PFD Report following the death of Sarah Lewis, which would fit the risks connected with a personality type D assessment both on severity and cause of death.

They are not accountable and have nothing to apologise for, therefore, carry on regardless of DecodeME initial results.

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.

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.

They (BPS proponents) now re-framed as 'mind-body' with (less obvious emphasis on the psychological/psychiatric) borrow from the mind-body-spirit movement which arrived in the west in complementary therapy in the 1970s. Little response from them apart from the above to the pre-print initial results of DecodeME as noted below.

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.

My feeling is that the Final Delivery Plan and the NIHR HERITAGE programme as mentioned above, and the fact that the eLearning produced under the Plan not being mandatory means they're not that bothered as 'there is a plan'.

Why on earth would Wessely, a 'professor of psychology' and psychiatrist (who vigorously defended the results of the PACE trial into an illness which has significant suicide numbers) state publicly in the Newsweek article:

"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.

Eleanor highlights a reason why:

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.

Wessely clearly made that statement without the people suffering with ME/CFS in the forefront of his mind at the time. Nothing is more destructive to hope than being effectively told 'don't hold your breath waiting'.

As Sean stated 'look at what he actually does, very consistently':

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.

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)

I don't think we can afford to ignore the potential impact and meaning behind his public comments because of the NIHR HERITAGE programme.

My impression, though, is that the BPS people are just talking to themselves. I would ignore everything they put out.

As Amw66 points out, there is now a new need for research into cost effectiveness of 'existing services' and is, at least partly, why this is included as part of the NIHR HERITAGE programme.

sunk cost

Anyway, these are my thoughts. I can't do anymore for a while, the last two days and this has wiped me out.

ETA: thread comments included up to page 12 I think. Anything after that I haven't see as it's taken me all day to do this. Have also tidied it up with larger paragraph breaks for easier read.

 

[MrMagoo]

Am I right in summarising that there was no signals found for Long Covid?
Which may explain why our “Professor of Thinking Yourself Better” hasn’t been tempted to get involved or react.

 

[Sean]

They've also easily gotten away with it for decades, putting about as much effort into as farting in a general direction. That breeds laziness and complacency. It's one reason why they are so awful at arguing their case: they never had to. They could always simply voice their opinions out loud and it was received as simple statements of facts.

So far I don't remember there being a single contentious interview with any of them, because they are never placed in such a situation. They are always given total deference and never face critical questioning. They are instead platformed into being allowed to say whatever makes them look good.

This.

"...because they are never placed in such a situation."​

And they make damn sure of it.