“Are Dutch psychologists distancing themselves from graded activity in ME/CFS?” by Anil van der Zee

[Dolphin]

English-language version:

Are Dutch psychologists distancing themselves from graded activity in ME/CFS? - Anil van der Zee

Different CBT in Behavioural Therapy? Clinical psychologists and cognitive behavioral therapists Klaas Huijbregts and Luuk Stronk wrote an interesting yet critical piece the journal Behavioural Therapy (Gedragstherapie) about the current way in which “ME/CFS” patients are treated through a rigid...

anilvanderzee.com

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Automated translation from Anil van der Zee’s Facebook page

Clinical psychologists Klaas Huijbregts and Luuk Stroink published in the magazine Behavioral Therapy a critical article about the rigid application of #CGT at #MECVS with graded activity.

They state that this protocol approach violates the principles of CGT and regularly leads to iatrogenic damage. Compared to an earlier article by Huijbregts from 2021, there are clear forwarding insights.

Nevertheless, I found it a shame that the input of experienced psychologists and psychiatrists I know was missing. Because of that, in my opinion, the article contains factual errors and, despite positive elements, it remains partly adherence to potentially harmful approaches.

Neither did I always agree with their vision of how psychosocial care should be shaped.

That's why I dove deep into the matter. Hopefully that will help set some issues straight.

Despite these shortcomings, I see Huijbregts en Stronk's article as a positive development, even though it may take a much bigger step further.

Read how and why in my blog:

Nemen Nederlandse psychologen nu afstand van graded activity bij ME/CVS? - Anil van der Zee

Andere CGT in Gedragstherapie? Klinisch psychologen en cognitief gedragstherapeuten Klaas Huijbregts en Luuk Stronk schreven een interessant en tegelijk kritisch stuk in het blad Gedragstherapie over de huidige wijze waarop “ME/CVS” patiënten behandeld worden aan de hand van een rigide...

anilvanderzee.com

Thanks to everyone who provided feedback.

 

[Peter T]

A very useful piece.

 

[Andy]

The article incorrectly uses the term ME/CFS for patients included in CBT research, even though CBT was developed and tested exclusively in CFS populations in which PEM was optional or even absent (Oxford, see also the PACE trial, Fukuda). For ME and ME/CFS, PEM, or becoming sicker after trivial exertion, is mandatory and appears historically in multiple terms and definitions.

The fact that ME was once reduced to (chronic) fatigue (syndrome), with PEM being ignored, has caused the patient community, which was barely heard, including by psychology, a great deal of iatrogenic harm.

Although patients did participate in studies, CBT studies are therefore not really about ME or ME/CFS, but about CFS. People with ME or ME/CFS always meet the CFS criteria, but people with CFS do not always meet the ME or ME/CFS criteria.

As a result, these studies do not represent the ME/CFS population well, and people with PEM may respond differently to treatment. The NICE guideline review therefore in part downgraded the strength of the evidence due to indirectness. Other reviews made the same distinction.

That is why I refer to CBT for CFS in the rest of the article. Using ME/CFS in this context is confusing and incorrect, and even later analyses that attempt to claim that CBT works for ME/CFS, and therefore with mandatory PEM, also show no objective improvement.

Unfortunately I think the argument made that patients defined by Oxford or Fukuda criteria and without PEM have "CFS", and not "ME or ME/CFS", is unhelpful and will just add to confusion amongst the patient population. Better, in my opinion, to say that Oxford and Fukuda criteria without PEM only identifies patients with chronic fatigue, especially if you continue to use "ME/CFS" as a term.

 

[EndME]

Unfortunately I think the argument made that patients defined by Oxford or Fukuda criteria and without PEM have "CFS", and not "ME or ME/CFS", is unhelpful and will just add to confusion amongst the patient population. Better, in my opinion, to say that Oxford and Fukuda criteria without PEM only identifies patients with chronic fatigue, especially if you continue to use "ME/CFS" as a term.

I completely agree. I think ME/CFS=ME=/=CFS is unhelpful and will just lead to further confusion amongst the patient cummunity and researchers.

Apart from that wasn't there an analysis showing that patients with PEM responded no different in PACE so isn't it all fairly irrelevant? In turn the article would then suggest that these therapies would be effective for chronic fatigue, because why else even mention all of that?

Edit: Or does one even want to argue that PACE should be re-run on patients identified by the CCC?