I've just watched the below talk by Prof Clarke and his colleagues at IAPT and I have a concern with the research he cites as a good example of IAPTs ability to treat Long-Term Health Conditions LTCs. I shall take you through some observations - may be something @CBTWatch look at
1st the cited study being used in the video for the economic benefits of IAPT treatment of LTCs comes from an IAPT commissioned study of their own early introduction of CBT providers eg Thames Valley. Prof Clarke is a co-author of the paper. journals.sagepub.com/doi/abs/10.117…
2nd I noted that whilst this is said to be a study of LTC treatment, its actually a study of patients with depression and anxiety - clear - who also happen to have LTCs. Essentially whilst this is meant to be a study of patients with CFS, pain, post-cancer fatigue, its not.
3rd can you follow these numbers - we start off with around 1000 patients, cohort 1 is the study group (early treatment group for LTCs) cohort 2 is the control group (late followers studied when no treatment wait list) the numbers jump all around - we end up 85 get high intensity
4th the expressed Goal was to show CBT is a good treatment for LTCs, gets people back to work and reduces spending on medical care. BUT as far as I can see this is far from a solid study - its so all over the place I find it hard to keep reading. People dropped, verbal consents
..Prof Clarke's study actually states that almost half of his 1000 patients followed in IAPT treatment DID not know their Employment status! really? -- can we trust this paper? In the previous paragraph they excluded people over 65, now a few more over 65 excluded too, who?
its a hard study to follow - it seems the control group, who are just waiting are having improvements in health care utilisation ie they are using less, but they are getting nothing! nice expectancy example here and impacts treatment group too.
make of this what you will - everyone is improving from the get go! the treated who can get as little as 1 session and the controls who havent even started treatment ! Head shake....why are the controls using less than treated patients at start point ummm - head scratch
ie less health care utilisation scores - even before they start treatment ! I mean this will be a slide I use many times in many upcoming papers. Hawthorn effect, treatment expectancy - call it what you will.
Prof Clarke and colleagues argue that IAPT delivers a £360 cost saving per patient treated with LTCs in 1st 3 months, this is based on reduced Inpatient costs. But no info is given on these. AnE or outpatient little savings. I suspect some issues around whats actually going on..
Continued: IAPT want us to trust their treatment figures & they claim they are cost effective yet in their published study of "early 1st providers of IAPT care for Long-Term Conditions" many patients' data on what treatment they got goes missing/isn't collected - why?
...how do we start off with 1,096 patient sample - we have data on 934 pre-treatment, then we only know 'what type of treatment delivery' eg phone, face-to-face for 447 patients? does IAPT not know what it offered these patients? Also only 85 end up getting high intensity CBT!
28 patients received an "email" from IAPT and that was counted as "treatment" ! in the treatment group who received treatment, not an email telling the patient they arent eligible - as they were the included cohorts.
the claim in this report is that patients treated by IAPT with LTCs eg COPD, cardiovascular, cancer, ME/CFS, IBS, used less hospital care and increased employment in the 1st 3 months of treatment - treatment that could be 1 phone call, skype, or email - this needs investigating!

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More from @keithgeraghty

25 Nov
Interesting finding from my reading of a 1993 CIBA conference on ME/CFS including a range of researchers in early 90s. The role of viruses was largely dismissed but 1 virologist raised concerns about the role of viruses that can clearly cause fatigue and immune changes.
A black box in ME/CFS from 1990s has been virologists uncertain "how" viruses cause fatigue in eg mono-EBV natural history studies show 10% of EBV sufferers may experience prolonged fatigue. Today we could think LongCovid. Psychiatrists theorised 'reasons' for fatigue continuing.
We do not know how or why one patient suffers prolonged fatigue and others do not following #Covid-19, or #ME/CFS, or EBV, our medical technology is not good enough to detect why at a cellular level. What do know is viruses and bacteria eg Lyme, Bart, can trigger chronic illness.
Read 6 tweets
4 Nov
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.
Read 14 tweets
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

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