Dutch journalist asks about pwME's objection to CBT/GET

Would someone who's on twitter please make this dutch journalist aware of...

- the S4ME PACE briefing paper: https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/#post-55894

- Graham's video: https://www.s4me.info/threads/video-the-pace-trial-a-short-explanation-graham-mcphee.4669/

- and Jonathan Edwards' submission to the Scottish parliament: https://www.s4me.info/threads/submission-to-the-scottish-parliament-by-jonathan-edwards.4916/ ?

 

@Grigor ? Though wouldn't surprise me if you are aware of this already.

 

Yes, he's replied.

 

Thank you @Grigor -- your blog might be the most apt answer.
And thank you @Andy and @adambeyoncelowe for reminding me of @Grigor's blog .

 

How about including the link to the pages on PACE in the new book Psychology in Crisis? Sums it up neatly from a methodological perspective.

Pages 132 to 140, I believe.

https://books.google.com/books/about/Psychology_in_Crisis.html?
hl=fr&id=CkNmDwAAQBAJ


ETA: I can do it actually, I forgot I have twitter

 

They don’t work.

That’s my objection. Personally I feel it’s a reasonable one.

 

That is a succinct and completely comprehensible analysis of what went wrong with PACE, but does anyone know what a "bumf" is?

 

"bumf" - a document, or collection of, or building full of, documents/paperwork which may, or may not, have relevance, that consequently few people like to read - preferring instead for someone else to do it it and deliver them a short summary.

Just my understanding of the term, other opinions may be available upon request.

 

Indeed. With a bit of string threaded through the corners, hung on the wall. I remember those "olden days"!

 

Just realized that this is a ongoing series of the dutch online journal "de monitor":

https://demonitor.kro-ncrv.nl/artik...ek-naar-mecvs-door-familieleden-van-patienten


twitter comments:




from the google translation:

The article mentions Ron Davis, Keith Geraghty, Lou Corsius, @Mark Vink (or Marc Vink?), @dave30th , among others. BTW, I think the author got the details about @dave30th's connection to ME a bit wrong.

Not able to write more ATM

eta: online "journal" is not the right term, it is a website connected to KRO_NCRV: https://en.wikipedia.org/wiki/KRO-NCRV

 

That looks pretty bad, and I get a sense that it's going to get worse. Really seems that they've not done any substantial digging into the evidence, and are instead doing a fun story of science vs patient activists.

It's important that patients are cautious and rigorous in the claims they make, to make this misleading narrative difficult to spin... but Knoop seems to get away with bullshit like his 'strict criterion for recovery' PACE claim, with "the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%". https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60172-4/fulltext

Any journalist that cites him as a CFS expert and fails to mention this spin is difficult to take seriously.

 

It got pretty bad already. Sorry, am not able to give a synopsis, but this Dutch series shortly after the Netflix debacle should alert us to seemingly sympathetic journalists.

 

Oh wow - this series really is appalling.

Here they have Knoop batting away softball questions which are presented as "the most important ten points of criticism of the treatment".

Did they find a patient foolish enough to list these things as the ten most important points of criticism, or is this just propaganda? Even on the 'recovery' spin, which is important, it's a very soft question and there's no follow-up to Knoop's responses. He's just presented as the expert giving the final word. Pretty shameful stuff.

https://translate.google.co.uk/translate?sl=auto&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://demonitor.kro-ncrv.nl/artikelen/je-eindigt-niet-in-een-rolstoel-door-gedragstherapie&edit-text=&act=url

 

Only slowly I am getting an idea of the structure of "de Monitor":

(About "de Monitor": https://demonitor.kro-ncrv.nl/over-de-monitor )

It appears to be a website gathering public input on controversial topics journalists want to investigate and eventually make a film series about. During the process of collecting experiences from the public, they publish articles on the topic (and it seems to me they have the illusion that the truth is to be found just somewehre in the middle of the opposing experiences and information, but I am happy to be proved wrong). Based on both collecting and publishing the collected experiences and information they eventually produce a film series.

If I understood correctly, the fim series about "Chronically Tired" ( https://demonitor.kro-ncrv.nl/deel-jouw-verhaal/chronisch-vermoeid ) will be broadcasted starting on September 4th. It seems still possible to provide experiences and information: https://demonitor.kro-ncrv.nl/deel-jouw-verhaal/chronisch-vermoeid

Apologies for giving such fragmented and confusing information. Perhaps I better should trust in our Dutch speaking members, but I am really concerned about the pieces published the last days and how the ME series' structure has been developed so far.

[ETA: who would like to help me with grammar and wording: the ME series' structure has been developing/ developed? evolving? ...? ]

 

Carolyn Wilshire replied to De Monitor on Twitter via @Grigor:

Thank you, @Carolyn Wilshire and @Grigor !

 

So they have exposed now the ME sufferer who "gave the direction to their investigation" - as I expected, really very bad:

De Monitor:

google translation:
https://translate.google.com/transl...-tijd-lig-ik-helaas-in-bed&edit-text=&act=url

https://demonitor.kro-ncrv.nl/artik...min-het-gros-van-de-tijd-lig-ik-helaas-in-bed

 

I'm not surprised that journalists who were new to the topic would find appealing a patient who was new to the topic and seemed 'open minded'. Unfortunately, this sort of guide is unlikely to be able to dig into all of the details of the evidence in the way that is needed.

I get the impression that in this coverage we're again seeing the whole psychological vs physical thing works against patients - it's a pointless distraction, and part of a simplistic narrative that many journalists seem to find appealing, but just leads to people rambling on about the need to develop a sophisticated understanding of how mind and body interact.

Journalists are generally not going to be interested in understanding the complicated legal and financial reasons that classing a health problem as 'psychological' can be problematic. They're more likely to want to virtue signal over their own attitudes toward mental health problems. Whenever debates about ME/CFS are presented in the terms of whether ME/CFS is physical/mental/whatever it seems to make it more difficult for us to get our substantial and legitimate concerns listened to and understood.