Dr Keith Geraghty Profile picture
Nov 4, 2021 14 tweets 7 min read Read on X
Records released by @NICEComms show the Royal College of Physicians @RCPhysicians asked NICE to remove an expert witness testimony on the grounds they werent an expert in "guideline dev or pragmatic trials". The expert in immunology has a long-term interest in ME/CFS science!
Instead the @RCPhysicians asked NICE to accept the views of their experts and even called on the NICE director to overrule the guideline committee and dismiss other expert witnesses - because they were critical of CBT-GET trial methods!
The @RCPhysicians argued that guideline committee members and witnesses who had any affiliation with ME patient organisations were "activists" and should be dismissed. These included doctors and professors with years of expertise and knowledge on ME/CFS.
What is most extraordinary is that there are public records showing "experts" (1-2 persons) from the @RCPhysicians were in direct communication with NICE senior managers, showing they had privileged access to NICE to express their views on the guideline.
If we look at RCP expert stakeholder comments to NICE, they come across as rather incoherent or at least imprecise, to me at least, see this example: p697
There is too much to detail what RCP experts wanted: here some comments: dont use ME/CFS use CFS/ME; dont refer to a "severe" group of pts; remove the word "medical"; dont state ME/CFS pts get worse or less care than other pts. Dont refer to a specialist ME team only gen rehab!
Lastly, may seem like a small point, but a leading @RCPhysicians expert who helped RCP draft their stakeholder responses to NICE was also doing the same for @BSRehabMed making appear as if this was two professionals groups - when in fact same experts working for both org's.
...you could call the last tweet "two bites of the cherry" being able to make stakeholder comments twice! one in one medical college and another in a society of rehab medicine - this was an attempt to show NICE there was wider medical agreement, when in fact, same experts.
The @RCPhysicians organised a co-ordinated response by sharing its response to @NICEComms with other dr organisations and getting them to reference the RCP position - as such RCP did not provide an unbiased standalone position given it was organised with a wide group.
RCP shows how out of touch with ME patients they are when they state they want CFS kept over ME/CFS, and that CFS as a term holds no assumptions v ME infers a disease! They forget, nerve and muscle in ME! - if they listened to patients they'd know what patients think of term CFS!
More: @RCPhysicians experts claimed to NICE orthostatic intolerance, something many ME patients report, is "overrated" in ME/CFS citing 1 study with statement "no association between OI and ME" - wholly wrong in fact! healthrising.org/blog/2020/08/3…
p746 @RCPhysicians experts also claimed 'Post exertional malaise' in ME/CFS (a cardinal feature) is too difficult to define and is too subjective and occurs in health people. I guess they forgot "fatigue" and "pain" are subjective" & PEM is defined and unusual in healthy people.
...in science training a PhD student is taught to present evidence fairly, that includes if one study says orthostatic intolerance low in ME/CFS and others say OI common in ME/CFS < at least ref both. RCP experts cherry pick references not giving full picture. Thats bad practice!
....it took me minutes to find various studies on orthostatic intolerance in ME/CFS< most showing some signs of it related to the condition. We must then wonder why @RCPhysicians experts decided to advise @NICEComms OI doesnt exist in ME/CFS and is over-rated? "experts would know

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More from @keithgeraghty

Jan 27, 2025
Article Guardian 'The mind/body revolution:' covers FND as the case example - Simon Wessely says its "unbelievably rare" - well his colleagues in UK psychiatry have actually pushed for it to be common based on their view that all medically unexplained symptoms in neurology departments may be called FND. theguardian.com/society/2025/j…
2. it will not be lost on all my followers that Prof Simon Wessely is a psychiatrist who pushed hard in the 1990s-2000s that illnesses such as ME/CFS and Fibromyalgia had no biomedical basis - essentially he and colleagues pushed a narrative of a biopsychosocial model without biology - and to have him be the commentator on the mind body revolution is ironic. If we look at depression research we see strides to show inflammation as a possible cause, changes in biochemistry following environmental factors, and genetics - thats true bio-psycho-social. But the same model has not been applied to ME/CFS and most likely is not being applied to FND.
3. You may notice the lack of mention in the Wessely narrative of viruses, or bacteria, or any pathogen as a possible trigger for any chronic illness, taking a healthy human into ME/CFS or other - the entire focus of germ theory medicine from 1800 to 1999 wiped away by a new view of "...emotional distress, environmental challenges, childhood trauma or “even being sedentary" as the important risk factors. We see pendulum swing, not a true integrative model, but a psycho-social swing, and whilst all factors are important, the key question is which are most salient to understanding cause and working out treatments.
Read 6 tweets
Oct 27, 2024
I think this really shows a clear and dangerous dogma in health psychology, that the 4 conditions focused on in the trial, IBS, Fatigue (ME/CFS), Pain, Fibromyalgia, are not "explained" & this CBT-based training does not explain all medically unexplained symptoms conditions.
The authors challenge the legitimacy of the term medically unexplained symptoms, but in paper they promote the notion of an even more nebulous disorder concept, Somatic Symptom Disorder or Bodily Distress Disorder, and assert that 2/3rds of participants meet the criteria for SSD.
In the trial, the patients with so-called MUS are not clearly defined, we have no data on complaints they have, MUS is very loosely defined, the inclusion criteria is difficult to understand, and high MUS score patients are excluded as they have too much MUS!
Read 13 tweets
Oct 25, 2024
@CGATist Prof Ponting is right to warn new researchers that ME research will not support careers, because it is almost impossible to stay focused on it long-term without funding. It is almost impossible to continue focusing on ME, so researchers move on.
I would like to raise the issue that UK ME charities tend to prioritise biomedical *lab research, meaning medico-health sciences research, epidemiology & the types of research myself and other health reserachers do, and want to do, is now severely restricted. So how to cotinue?
I wrote a letter titled "The Funding Gap" in ME to the 3 major ME charities in the UK. @MerukCEO @MEAssociation @actionformeI have recommended they collaborate to promote fellowships, PhD studentships, and long-term funding to keep people like me & others, focusing effort on ME.
Read 7 tweets
Jan 26, 2024
Acu Seeds & the Power of Belief: I spent an hour listening to a podcast with the @BBCDragonsDen contestant/director of Acu Seeds about her healing journey with ME/CFS. In her own words she says she was diagnosed with Jan 2019, made a 60% recovery by June, and 100% by Feb 2020. Image
A few important points: 1. data shows that younger people who suffer post-viral fatigue, eg post EBV/Mono, have a 90% chance of recovery within 1 year, it is only around 10% that go on to have symptoms post 12 months.
2. Ascribing recovery to any one factor, is fraught with bias.
3. I celebrate this person getting their health back.
4. Belief is a powerful emotion. She says she saw a chinese herbalist who put her on 60 different herbs and treatments (I assume this is wordplay & not factual in numbers terms).
5. Ear seeds appear to have played no part imo
Read 4 tweets
Dec 17, 2023
Just started listening to a couple of talks by the COFFI group, Collab Fatigue Following Infection - intro by director about choosing to get well after Long-Covid set the exoected psycho-behavioural control over illness tone, so far! coffi-collaborative.com/post/live-semi…
Watching these videos does make me feel a bit like a party pooper - for instance, I'd say to this speaker we "feel' tired after activity, we also "feel" tired after flu, whats the difference, explain the biology to me? Image
Each speaker deserves to be heard and with respect, but their ideas and models don't deserve respect, especially when outdated, here we have the Treat Response - HPA axis kick in - Fear-Avoidance Behav Model that is crude, it in no way explains ME or LongCovid - its small minded. Image
Read 9 tweets
Oct 12, 2023
I want to share some feedback of trying to continue ME/CFS research: I am struggling to continue in ME/CFS work due lack of funding despite effort & this is a challenge I do not know how to fix on my own. So, I am sharing my experience with all ME advocates/charities/supporters.
- I have had the most amazing support over the past few years from the ME community, esp via crowdfunding drives, from charities and private donations, however it is a real struggle to keep going without consistent funding, and I have shared this issue with UK charities this year
- I have had to halt my ME/CFS work, until I find a way to fund projects. I have published many scientific papers on ME/CFS, but this year I have struggled to secure long-term funding support. I shall share a bit more on this. Applying for grants can take months of work.....
Read 7 tweets

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