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

2 Nov
The 1st US female Thunderbirds fighter pilot had to retire due to tick borne illness - that UK doctors suggest doesnt exist in chronic form. The idea ME or Lyme patients stay sick due to psychological issues & fear of exercise is a myth in a CBT-GET model. cdmrp.army.mil/cwg/stories/20…
The myths and unscientific claims about patients with ME/CFS, Lyme and other medically unexplained chronic symptoms are outlined in my CBT model paper journals.sagepub.com/doi/full/10.11… and we see in the new NICE guideline drs tried to prevent authorities moving away from this flawed model.
The UK @BSRehabMed @RCPhysicians @rcpsych have stated they will continue to make CBT a central treatment for ME/CFS - yet its theoretical basis here is flawed. They say they will continue to make exercise a treatment, yet @NICEComms have asked them to stop doing graded exercise.
Read 4 tweets
1 Nov
Some comments by Colleges & Drs: @BSRehabMed argued to NICE not to use the terms "flare" or "relapse" in ME/CFS because they sound too biological! This constant drive to keep ME/CFS away from anything biological: they wanted the term "decompensation" instead? thats an easy one Image
p109 British Rehab Med drs asked NICE to remove any critical comments about drs after many patients recounted negative and distressing experiences. @BSRehabMed argued drs would not read the guideline if it was critical of them! instead write the guideline about "all that is good" Image
add on to last, extraordinary that Rehab doctors admit that MS patients recounted similar problems with doctors, being disbelieved, and so on, yet the MS guideline or audit was written in a positive manner. Are doctors not able to take a little criticism and learn from mistakes?
Read 6 tweets
24 Sep
A statement by 2 Royal Colleges is presented on the Sussex and Kent ME/CFS Society. The medical advisors to this charity are the same advisors who are telling Royal Colleges to keep Graded Exercise Therapy and are responsible for pausing the NICE guideline measussex.org.uk/royal-colleges…
Note the position of the Royal Colleges is that 'they think GET helps, they gave their evidence, they dont accept the new guideline dropping GET for lack of evidence - and they want NICE to put it back in, otherwise they wont accept the NICE guideline, a remarkable tale of power.
..it appears Royal Colleges are only going to a roundtable to demand that @NICEComms reverse dropping GET, that their experts know better than an entire NICE 3-year consultation and evidence review process: this is an extraordinary case of Evidence-Based-Medicine going wrong!
Read 4 tweets
20 Sep
Why data from PACE trial author and London GET clinic is dubious and does not reflect real ME/CFS. 2021 paper attempts to show GET benefits = gains made on fatigue scale happen in 1st 4 hours/sessions then dont continue to normal levels. tandfonline.com/doi/full/10.10…
92 patients data since 2002 (almost 20 years) including 20 drop-outs still used as data. To take an ME/CFS patient and have them drop fatigue by 4th session may be an act of changing perception. Why then do patients not seem to be returning to normal fatigue levels by the end?
This paper can only be judged as an attempt by a PACE author to sure up evidence for GET use in the face of the impending dropping of GET by NICE, by clubbing together data from as many patients as could be mustered from their clinic over 20 years, no treatment uniformity at all.
Read 16 tweets
11 Sep
Should Prof Black's 2008 Report on Work p14, 'that CBT should be used to return sick people to work', be considered as a strong pro-CBT bias for her to Chair a @NICEComms ME treatment guideline review, that recently downgraded CBT and GET use in ME/CFS? assets.publishing.service.gov.uk/government/upl…
I wonder what the ethics of using CBT as a return to work tool are in totality, perhaps some bioethics/philos experts like Dr Blease or others might investigate this trend @crblease - it seems to eminate from ME/CFS and be a template eg is cancer treatment a return to work tool?
Recap why Prof Black is too conflicted imo to chair the @NICEComms ME treatment guideline table
1. Ex-president of Royal College of Physicians (who now oppose the guideline)
2. heavily promotes CBT and BPS model
3. worked with PACE author
4. advisor to DWP who funded PACE trial
Read 4 tweets
10 Sep
I agree with Peter White that drs should not tell patients with ME/CFS that it is an incurable disease, because data shows some people get better, some improve, many dont; equally drs shouldn't tell patients GET is safe and effective, neither statement is true. Word games.
PACE author Peter White often uses a photo of a female patient with ME in a wheelchair feeding a horse in talks to drs, asking "whats wrong with this picture"? He panders to drs ignorance of medically unexplained symptoms -eg "why cant this patient walk, muscle tests are normal"?
..what follows is White's explanation of why patients might have ME, their beliefs, and behaviours. The story given to drs is not supported by science, but simply rests within a grand biopsychosocial model of all illlness. as I've detailed in a few of my papers. a CBT model.
Read 7 tweets

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