Patient survey by the Dutch ME/CFS Association - Corsius et al. 2019

Corsius et al. (2019). Zorg voor betere behandeling bij ME. Enquête onder ME-patiënten naar hun ervaringen met behandelingen bij ME.

A new patient survey was published two days ago by the Dutch ME/CFS Association (ME/CVS Vereniging). It was conducted online in 2017 and had valid results for 418 respondents. I would like to highlight some of its results regarding the efficacy of cognitive behavioral therapy (CBT) and graded exercise therapy (GET). The survey asked about patients’ experiences with these treatments and, as in other surveys, these were mostly negative.

Of the 129 respondents who said they had followed CBT without GET, 47% said it had a negative effect on their health. Of the 142 respondents who said they had followed CBT with GET, 66% said it had a negative effect on their health. These figures can be compared to those of the 214 respondents who said they had received ‘biomedical treatment’ for ME/CFS. In this group only 11% said the treatment had a negative effect on their health. The survey also asked patients to give a score from 1 (bad) to 10 (good) to each of the three treatments. CBT with GET got an average score of 2,5, CBT without GET got a score of 3,7 and ‘biomedical treatment’ received a score of 6,3.

Also interesting: the survey asked whether respondents were members of a ME/CFS patient organization or not. Almost half was not a member, and they were equally negative about the effects of GET and CBT than the group that was a member of a patient organization.

The survey asked about the reasons for deterioration following CBT or CBT plus GET. The most supported statements were that the treatment was too taxing, that the therapist instructed them to push their limits. Patients said they increased their activity level as the treatment goal prescribed but that it was too much for them. More than 80% of patients who deteriorated in the CBT groups said it affected their ability to do daily chores such as the household and (self-) care.

A disturbingly high figure of 40% in the CBT plus GET group said that this treatment was mandatory, for example, because they thought they might get into trouble with work, school or receiving disability benefits if they didn’t follow the treatment.

Finally, the survey presented several assumptions of the cognitive-behavioral model such as the idea that they perpetuate their illness with unhelpful thoughts, fear-avoidance, deconditioning etc. On all these statements, ca. 90% of respondents said they disagreed.

The full report can be read in the link below. I’ve been told that there will be an English summary soon. Many thanks to all those involved.
https://www.me-cvsvereniging.nl/sit...nten/Rapport Zorg voor betere behandeling.pdf

 

@adambeyoncelowe , one for the committee?

 

I will send it to the chair but it will probably still need to be submitted, in English when available, via NICE's template by a stakeholder. Could S4ME add it into its own submission?

 

As things stand, unless some volunteers come forward, there won't be one.

 

Maybe another organisation can consider it? @Russell Fleming @EspeMor

 

I'll add it to the list we're reviewing for the #MEAction UK submission, @adambeyoncelowe @Andy.

 

Thanks!

 

The ME/CVS Vereniging has responded to my Facebook post I'll hope it's ok to reproduce it here, as it might be relevant:

ME/CVS Vereniging: "We are working on a translation into english. Anybody who is a native speaker who is willing to check our grammar? When the english summary is published we will also try to send it to NICE, since they asked for evidence."

 

I'm happy to work on the English, but couldn't do the whole thing alone. If others were also willing to take on a few pages, I'd be happy to be on the 'grammar committee'!

 

This is the stuff of massive class action lawsuits. The evidence of harm has been consistent for years and still they are often mandatory. This beyond violation of informed consent and into coercion, it dismisses the very idea that consent even matters at all here.

Every survey is consistent with the others in showing the complete shambles of the current paradigm, consistent across time, independently in many countries and regardless of circumstances, such as here asking about belonging to a support group, a common psychosocial trope.

At which point does it become sanctionable to continue lying about those "treatments" being safe and effective against all evidence? Nevermind past claims, this is still the current false narrative and guaranteed to hold for the foreseeable future despite clear evidence otherwise.

 

I could help to some degree in a proof reading capacity, but doubt my skills are up to doing much else. It will be pretty evident from my posts what I would and would not be any help with. If people think I can then open to suggestions.

 

Thanks Barry but at the moment we don't have anybody to put together a document to even proofread. Fortunately it seems that MEAction will be able to submit something and hopefully our discussion thread on the request for submissions will at least have been a source of ideas for @Gecko et al.

 

Definitely is!

 

What is the ultimate date to submit for NICE?

 

Only just seen this. I'm a native speaker and English teacher. I'd be happy to check it, so feel free to PM me.

 

Thanks, but I myself am not involved with the ME/CVS Vereniging or the analysis, just passing on the message.

I'll send them a link to this thread and see if they are still looking for someone.

 

They've responded. People interested in helping can contact them at: contact@me-cvsvereniging.nl

Just to be clear: it's about translating the 3-4 page summary, not the 100-page report.