Criticisms of DecodeME - and responses to the criticisms

[Andy]

I reads as if the patients state this but I assume it was done blind (to the patient) by reported symptom screening

Exactly.

 

[Evergreen]

And correcting from ICC to CCC?

Done!

 

[Turtle]

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.

BPS needed a whole year to react to the Wüst group findings and, even after a whole year of thought, were reprimanded by the Wüst group for their inaccuracies.

 

[Joan Crawford]

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.

Yes, views change as to the audience and the hoped for outcomes (as in more funding for the gravy train), not: is there actual, tangible better outcomes for patients. That's almost a side show. So this has to be bad faith as careers and building empires was or became more important than patients. The empire they built has no substance or foundations. All falls away to nothing. Not nothing for the patients who in good faith want answers, to be well and simply get on with their lives.

 

[Peter T]

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.

I have known people that have the basic assumption that they are always right, so if something they previously said is shown to be wrong, that is a logical impossibility and the person reporting it must be deliberately lying, certainly they never said, wrote or intended that.

It is possible that Wessely is not consciously acting in ‘bad faith’ merely correcting other’s misunderstandings of what he said which a priori must have been true, despite what can be proved by objective reality. However the end result is just as harmful as if he was being deliberately malicious.

 

[Hoopoe]

[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.

Carson gives the impression of citing an authoritative source on the high misdiagnosis rates in ME/CFS diagnosed by questionnaire when this is not the case.

"Diagnosis was done by questionnaire" makes it sound like patients filled in questionnaires about symptoms, while they were asked about diagnosis received by a health professional.

On the NIH study, he presumably refers to these numbers "27 underwent in-person research evaluation and 17 were determined to have PI-ME/CFS by a panel of clinical experts with unanimous consensus." These 27 were all people with documented diagnosis of ME/CFS by a physician. If I remember right at this step there were also other checks to further exclude anyone with certain comorbidities. So misdiagnosis is high if we define misdiagnosis as including not just false diagnosis, but also having significant neurological or fatiguing illnesses or lyme disease, and there not being a consensus among the panel that the person really had ME/CFS.

Even if we assume significant misdiagnosis, it still leave 8 statistically significant hits.

 

[Lou B Lou]

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.

From the first of a series of open letters from the Countess of Mar to Simon Wessely, with his replies. December 2012:

Lady Mar to SW:

".. So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB [Disability Living Allowance Assessment Board] on 2 November 1993 which was considering those with ME/CFS you said: “Benefits can often make people worse”, yet in your letter to Dr Mansell Aylward at the DSS [Department of Social Security] you wrote: “CFS sufferers should be entitled to the full range of benefits”. Given that, in 1990 you had written: “A number of patients diagnosed as having myalgic encephalomyelitis ……… were examined ……..in many of them, the usual findings of simulated muscle weakness were present” (Recent advances in Clinical Neurology, 1990, pp 85 – 131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME."

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.margaretwilliams.me/2012/mar-wessely-correspondence_dec2012.pdf


The entire exchange of letters is worth reading, not least as demonstration of SW's slippery yet slick MO.
.

 

[Robert 1973]

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

Not that I’m aware of. But there is quite a lot of evidence that suggests that it’s wrong:

This prospective study found that psychological symptoms were not predictive of developing ME/CFS: https://pubmed.ncbi.nlm.nih.gov/33367564/

I think Jason may have done other prospects studies with similar results.

The idea that anxiety impedes recovery is what they refer to as fear avoidance behaviour in their CBT/GET models. Trials of therapies based on these models have failed to demonstrate efficacy.

DecodeME found 8 genetic signals linked to ME/CFS. None are associated with anxiety or depression.

Wessely and his colleagues have been promoting the idea that anxiety perpetuates ME/CFS since the 1980s. They have had ample opportunities to find evidence in support of their belief, but to date, as far as I’m aware, they have produced none.

DecodeME should be the end of the road for this harmful trope.

 

[MrMagoo]

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

This.
The general public aren’t looking “behind the headline” they believe ME is genetic now because that’s kind of what the headline said (that’s not even what it actually said).

They will also still believe that being “burned out” and “run down” and “overdoing it” and that all causing “inflammation” contributes to triggering it, and depression is all part of that.

But that’s because the general public aren't scientists, and these are all popular themes in western culture, and people don’t really do deep research on this kind of thing, they just take in sound bites.

 

[rvallee]

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…

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.

I can't see them changing until those conditions change. They have no reason to. Once those conditions change, though, it should be a rather nasty and hard fall from grace, but they'll likely still be defended anyway, because when someone manages to sell cheap pseudoscientific junk to a group of professionals, the group of professionals is just as guilty of failing. None of this was ever credible.

 

[rvallee]

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.

I don't believe what he says because I've seen what he did

 

[Evergreen]

Carson gives the impression of citing an authoritative source on the high misdiagnosis rates in ME/CFS diagnosed by questionnaire when this is not the case.

"Diagnosis was done by questionnaire" makes it sound like patients filled in questionnaires about symptoms, while they were asked about diagnosis received by a health professional.

On the NIH study, he presumably refers to these numbers "27 underwent in-person research evaluation and 17 were determined to have PI-ME/CFS by a panel of clinical experts with unanimous consensus." These 27 were all people with documented diagnosis of ME/CFS by a physician. If I remember right at this step there were also other checks to further exclude anyone with certain comorbidities. So misdiagnosis is high if we define misdiagnosis as including not just false diagnosis, but also having significant neurological or fatiguing illnesses or lyme disease, and there not being a consensus among the panel that the person really had ME/CFS.

Even if we assume significant misdiagnosis, it still leave 8 statistically significant hits.

Yeah, I decided to deal only with the substantive part of their argument, rather than the details which were a mess. Because in an ideal world, yes, DecodeME would have started with 26,000 patients from GP surgeries or specialist clinics. But with 8000 patients treated per year in the UK (according to Collin & Crawley 2017 who cite Collin et al. 2012 for this), and not all diagnosed with ME/CFS, it would take forever to get to that number. Not feasible.

What he does manage to do is put out into the public sphere that "diagnosis by questionnaire" is a thing in ME/CFS - marvellously effective at undermining the whole illness, patients and health professionals in one fell swoop.

I don't know what study or statement he's referring to. The NIH intramural study wouldn't make sense with his argument. Only the 17 cases filled out questionnaires. Before that, only 4/27 were diagnosed with something else - that's 15%. The other 6 who were excluded were either not post-infectious (4) or withdrew (2). He could use it to argue that misdiagnosis by physicians is common in ME/CFS.

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.

Yeah, this conflation irks me too!

 

[dave30th]

I think the forth commenter also deserves a mention?

funny I hadn't seen that. they must have added her later. when I first looked, there were only the three I mentioned.

 

[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.

 

[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.

 

[Sean]

What [Carson] does manage to do is put out into the public sphere that "diagnosis by questionnaire" is a thing in ME/CFS - marvellously effective at undermining the whole illness, patients and health professionals in one fell swoop.

Ask him about assessing treatment outcome by questionnaire, which is the preferred method of the psychosomatic/FND club.

He might come to regret opening that can of worms.

 

[Tree]

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 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'.






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'.

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.





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





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

















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.








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.





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:





Eleanor highlights a reason why:





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':







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




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.

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.

@Maat nice to see you here again, was wondering how you were doing!

 

[Snoopydog1]

“More importantly however no-one really knows what is wrong with the patients. Diagnosis was done by questionnaire and this has a significant error rate.

Are they omitting the FACT that it was saliva that was tested to get the results of the Decode study? As I see it the questionnaire is important but not as important that these findings were due to the analysis of our saliva not the questionnaire. Maybe that fact isn't convenient for them to acknowledge as it makes their conclusions meaningless in my opinion.

Also I believe that many samples weren't accepted or rather people weren't asked for samples if the questionnaires didn't meet the strict criteria for this study but maybe that is another fact they chose to ignore preferring their ignorant asumptions as usual.

 

[Robert 1973]

My (slightly edited) letter in The Times today, and one from Andrew Millar: https://www.thetimes.com/comment/le...letters-supreme-court-gender-ruling-d270xjch2

Hope for ME​

Sir, Chris Ponting says that medical misogyny has held back research in myalgic encephalomyelitis (News, Aug 8), but appropriate scepticism of scantily evidenced claims may also have contributed. Histopathology pre-dates genetic testing in medical research and remains a diagnostic linchpin. No study has shown microscopic evidence of diseased muscles (myalgic) or the central nervous system (encephalomyelitis). The finding of clusters of genes associated with ME does not prove they are part of a disease pathway, or what that pathway is. Professor Ponting is to be congratulated and encouraged but he has plenty more research to do to demonstrate the disease process.
Andrew Millar
Wallingford, Oxon

Sir, As someone who has been severely disabled by ME for more than 30 years, I was delighted to read about the results of DecodeME. However, Chris Ponting is right to express anger that this type of genetic analysis was not done 15 years ago. As you reported (News, Jul 22), after a three-year delay, the Department of Health and Social Care has published its dismal delivery plan for ME, but it included no commitment to funding and no pathway to providing adequate services. For decades, governments have told us they are committed to helping people with ME, but all the evidence suggests the opposite.
DecodeME has given me and millions of others hope. The time has long since passed for the government, funding bodies, medical institutions and individuals to acknowledge their mistakes, apologise to patients, and act to ensure that quality scientific research is sharply increased and patients are given access to appropriate physician-led services.
Robert Saunders
Balcombe, W Sussex

Not sure who Andrew Millar is.

BlueSky post sharing the letters:

 

[hotblack]

Nice work @Robert 1973