Dr David Tuller: New Study Promotes “Bespoke” Hospital Rehab Program for Kids with ME/CFS

Countrygirl

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https://www.virology.ws/2022/10/24/...-hospital-rehab-program-for-kids-with-me-cfs/

Trial By Error: New Study Promotes “Bespoke” Hospital Rehab Program for Kids with ME/CFS
24 October 2022 by David Tuller Leave a Comment

By David Tuller, DrPH

The International Journal of Environmental Research and Public Health recently published a paper called “Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS.” The investigators retrospectively reviewed the records of 27 children and young people (CYP) who were treated in a ward-based rehabilitation program in 2015 and later discharged from the ME/CFS service.

In laying out the rationale for the study, the paper does reference the new ME/CFS guidelines issued a year ago by the UK’s National Institute for Health and Care Excellence. But it does not mention the core finding of the guidelines—that cognitive behavior therapy and graded exercise therapy should no longer be recommended as treatments for the illness. (This determination represented a complete reversal of the recommendations in earlier guidelines issued in 2007.) Nor does the paper mention that NICE assessed the quality of the evidence for the CBT/GET approach as “very low” or merely “low.”

And that’s a real problem, because this sentence appears right after the reference to NICE: “The evidence in CYP for treatment is limited, although there is some evidence that cognitive behavioural therapy (CBT) may be beneficial.” Hm. Isn’t NICE’s finding relevant for this claim? Why do the authors not mention what NICE has concluded? It is of course inappropriate to ignore salient but inconvenient facts. Suggesting that CBT “may be beneficial” without mentioning that it has officially been found not to be is unacceptable and suggests a certain lack of academic integrity.

(Interestingly, the study includes this revealing sentence: “In adults, studies have shown <10% recovery to pre-morbid levels during the period of follow up.” This statement appears to undermine the PACE trial, essentially throwing its bogus claims of 22% recovery rates under the bus. The statement more closely corresponds to the findings of the PACE reanalysis published in BMC Psychology, which found that all four groups had “recovery” rates—per the PACE protocol criteria—in the single digits, with no statistically significant differences between the group. I was a co-author of that paper.)
 

Countrygirl

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Attached is the hospital's leaflet, updated 2022, on ME/CFS.

They are advocating GET and CBT in flagrant disregard of the NICE Guidelines.

I have also received some disturbing accounts from patients who have deteriorated severely on account of the treatment at UCLH. One was reduced to needing a feeding tube as a result of the inpatient treatment and another tried to rescue her child who was being repeatedly pushed beyond her limits. The doctor retaliated by reporting mum to Social Services which could have instigated Child Protection procedures. None of these cases are reported in the paper of course.
 

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Attached is the hospital's leaflet, updated 2022, on ME/CFS.

They are advocating GET and CBT in flagrant disregard of the NICE Guidelines.

I have also received some disturbing accounts from patients who have deteriorated severely on account of the treatment at UCLH. One was reduced to needing a feeding tube as a result of the inpatient treatment and another tried to rescue her child who was being repeatedly pushed beyond her limits. The doctor retaliated by reporting mum to Social Services which could have instigated Child Protection procedures. None of these cases are reported in the paper of course.
It was last updated in 2020. It was due for update in June 2022.