Thread by @leonline007

- CBT en GET is not effective with ME(cfs) but harmful.

(It is however useful to separate ME from CFS more in🧵)

It is not effective for many Longcovid patiënts. Because many fulfill ME(CFS) criteria

@nrc @refdag
@Rovers_Chantal (leestip)

mayoclinicproceedings.org/article/S0025-…

In the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),”

leading to considerable deconditioning. However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment.

The largest of these studies is the 2011 PACE (Pacing, graded Activity, and Cognitive behavior therapy; a randomised Evaluation) trial.

PACE reported that these therapies were safe and resulted in recovery for 22% of participants and improvement for 60% to 61%.

However, outcome measures were modified midtrial without a clear rationale!

When the data were reanalyzed with the original protocol, improvement decreased by a factor of 3 and recovery rates decreased to 7% for CBT and 4% for GET, not significantly different from controls.

The US Agency for Healthcare Research and Quality reported that many of these studies used definitions that could have included participants with other conditions and found little or no evidence of efficacy once these studies were excluded from the analysis.

Finally, contradicting safety claims, 54% to 74% of patients have reported experiencing harms after GET.

Biomedical research has been done in ME and replicated in LongCovid.

Not understanding LongCovid is caused by ignoring PAIS in general and ME specifically.

They aren’t mysteries completely. Just lacking research.

Just as an example: and look at the dates.. :(

And so much more: lifewithmebysissel.wordpress.com/2022/10/31/und…

@LifelinesNL voor Van Rosmalen.

Stop researching CBT and GET on patients who meet ME criteria.

Enough is enough. It isn’t helping.

ME: serious condition. PEM as a central symptom. Also often Ortostatic Intolerance.

CFS: prolonged unexplained fatigue with different causes. Like virus, burnout etc.

Be aware that illnesses primarily effecting women lack funding as fact.

nature.com/immersive/d415…

Learn more? A great piece for all psychologist and MD’s.

The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

opastpublishers.com/peer-review/th…

Regarding LongCovid and ME. GET warnings en CBT also apply to LongCovid:
nature.com/articles/s4157…

LongCovid/ ME:

Just a example
An interesting slide during the presentation in Berlin by Christian Puta. It shows that those who had rehab that didn't take PEM in account showed worsening of general health versus rehab with taking it in account showed a slight improvement.

#pwLC #pwME #mecfs #LongCovid
@2eKamertweets
@LongCovidNL
@LongCovidKids @LCAIreland @LongCOVIDPhysio @LongCovidUK @LongCovidUSA @LongCOVIDAust @AuLCOVID @LongCOVIDEurope @PostCovidNL

@threadreaderapp please unroll