UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

[Hutan]

Supposition. Would enjoy reading their proof of this. Was it a psychologist/therapist? A lot of people throwing around unproven biological theories out there and then being picked up by public and wellness industry e.g. intergenerational trauma, it’s in your DNA. Not proven.

Of course it's supposition. Our local ME/CFS charity provided a grant to send a doctor to the Emerge conference - so, quite a big deal, international flights and accommodation costs. She was selected as she was the only doctor who applied and she came across as empathetic and concerned about ME/CFS patients. We hoped she would bring back the knowledge she gained to share with other doctors in our region. The 3 day conference had a good biological focus. Nevertheless, Raijmaker managed to slip in a slide aiming to suggest that CBT helped people with Q fever fatigue syndrome, and lots of BPS proponents attended the conference and talked up CBT during the morning tea lunch breaks - notably Nathan Butler (of PACE fame, he runs a GET based rehabilitation clinic).

So anyway, the GP comes back and, as she was required to do, gave a presentation to the regional ME/CFS charity. And she explained to the audience some of the biological findings in very general terms - and noted that CBT helps by reducing inflammation. All that effort by ME/CFS advocates in NZ and Australia, and we just made things worse.

We are well off-topic now, except perhaps for illustrating just how attractive the idea of 'correcting thoughts and behaviour' is as a treatment for ME/CFS. People don't need solid evidence to believe it. With the NICE guideline still being a bit equivocal about exercise and CBT, we have a substantial job to effect change.

 

[Solstice]

Yes, the only thing that will finally shut (most of) them up is when a truly unarguable biological cause is found why ME/CFS leads to an abnormal response to exertion. One that cannot be influenced by magical thinking. Of course there will always some who insist anything can be fixed by magical thinking.

As someone else above said they'll find a way around it. The only thing that will truly shut them up is if all their papers get thrown out for poor research standards. Which is the way I'd try to go. Get it into popular opinion that unblinded trials with subjective endgoals are shit and it's truly the end of their empire-building. Hammer home all the other insufficiencies of their trials for good measure.

What we can see in a whole gamut of diseases is even with a clear and obvious physical cause, they will wiggle their way in with their bullshit methodology and suspect trials. Their science needs to be attacked and debunked for their model to fall from grace. Enormously tall order though.

 

[Barry]

As someone else above said they'll find a way around it.

Agreed. But the more and more sound evidence that emerges of biomedical cause(s), the more and more fantastical and ludicrous the psych arguments will become. There would then come a tipping point I think, where their science would finally be fully exposed for the shamanism it is. The 29 Oct 2021 was a very important milestone on that road.

 

[Solstice]

Agreed. But the more and more sound evidence that emerges of biomedical cause(s), the more and more fantastical and ludicrous the psych arguments will become. There would then come a tipping point I think, where their science would finally be fully exposed for the shamanism it is. The 29 Oct 2021 was a very important milestone on that road.

I hope so, so far one of the most ridiculous treatments invented in LP still serves customers/victims.

 

[Mithriel]

If a biological test is found they will just say that those people were misdiagnosed with CFS and carry on treating people who feel fatigued but had a negative test. That 49% of people who are misdiagnosed at the clinics won't have a positive test for ME and will still be there and the ones with burnout and time limited post virals.

It might not have much impact on the clinics because they do not treat us anyway.

 

[JohnTheJack]

I don't see blood clots altering the landscape any time soon.

Yeah, as with ME, there will be many announcements of breakthroughs and biomarkers, etc, which turn out to be red herrings. I remember in 1987 going to St Mary's, Paddington, for the ME blood test announced with great fanfare on BBC news. But I was young then...

 

[JohnTheJack]

If a biological test is found

Remember, (when it suits them) they're not making any assumptions about the illness or whether it is or is not pathological. They're just rehabilitating patients.

 

[Trish]

Some posts have been moved to a new thread:
David Tuller interviews Adam Lowe about his experience as a lay member of the NICE ME/CFS guideline committee

 

[Barry]

Just realised - it's exactly one month ago today ...

 

[Kalliope]

Live Landmark has an opinion piece at forskning.no, again arguing that the new guidelines are not fit for purpose and should be ignored, and throwing in some patient bashing for good measure... she even cites the PACE trial to prove her point that pacing has no evidence base.

Den britiske ME-veilederen er et resultat av aktivisme, ikke forskning
The UK ME Guide is the result of activism, not research

It has now been translated into English.

Which is weird.. They usually don't translate opinion pieces as far as I know and why on earth would they prioritise the opinion piece by some in alternative treatment rather than prof. Tronstad's piece?

The British guideline for CFS/ME is the result of activism, not research

ETA They are tagging the Guardian on twitter for some reason.

 

[Kalliope]

It has now been translated into English.

Which is weird.. They usually don't translate opinion pieces as far as I know and why on earth would they prioritise the opinion piece by some in alternative treatment rather than prof. Tronstad's piece?

The British guideline for CFS/ME is the result of activism, not research

ETA They are tagging the Guardian on twitter for some reason.

This is what they say about which opinion pieces are translated to English and published on their English platform. But I'm pretty sure there's an editorial decision as well and that not everyone who wants their text published will get a yes from them. Also notice that Flottorp from the Norwegian Institute of Public Health has liked the opinion piece.

 

[mango]

It has now been translated into English.

Which is weird.. They usually don't translate opinion pieces as far as I know and why on earth would they prioritise the opinion piece by some in alternative treatment rather than prof. Tronstad's piece?

The British guideline for CFS/ME is the result of activism, not research

ETA They are tagging the Guardian on twitter for some reason.

Could they maybe have been encouraged by the same English BBC journalist/reporter/? who has recently been contacting Swedish ME doctors/researchers and ME deniers, apparently asking around about the controversies and the horror stories?

 

[Andy]

This is what they say about which opinion pieces are translated to English and published on their English platform. But I'm pretty sure there's an editorial decision as well and that not everyone who wants their text published will get a yes from them. Also notice that Flottorp from the Norwegian Institute of Public Health has liked the opinion piece.

Am I missing something? They say they don't translate opinion pieces, yet that is exactly what Landmark's writing is?

 

[Kalliope]

Am I missing something? They say they don't translate opinion pieces, yet that is exactly what Landmark's writing is?

Yes, they don't translate opinion pieces, but you can send an opinion piece to them in English or translate your Norwegian opinion piece into English and "try your luck". I can't recall having seen opinion pieces before on their English platform (but then again, my memory is bad so it might have happened). Usually it's a selection of their own articles that they translate themselves.

ETA: Scrolling down their site I see there are other opinion pieces in English as well, not just articles from the staff or partners.

 

[Kalliope]

Brian Hughes with excellent comments to the Landmark opinion piece on twitter:

 

[Barry]

Am I missing something? They say they don't translate opinion pieces, yet that is exactly what Landmark's writing is?

With big letters splashed on it saying so.

 

[Hutan]

Thank you @Brian Hughes

 

[Suffolkres]

Brian Hughes with excellent comments to the Landmark opinion piece on twitter:

https://me-pedia.org/wiki/Live_Landmark
( my emphasis!)

The research group cooperate with Haukeland University Hospital with neurologist Jone Owe (phd) (11) and the National Institute of Public Health with Professor Per Minor Magnus (12). The research group also have a cooperation with University of Bristol with professor Esther Crawley.

Live Landmark was also one of the first members of Recovery Norway, an organisation initiated by medical doctor Henrik Vogt, phd and a group of Lightning Process practitioners(13). Recovery Norway (14) is an organisation consisting of people that have had improvement from ME/CFS, tinnitus, long term stress, burnout, depression etc., and who feel that mental techniques have been instrumental in their improvement. People who have recovered with medication, supplements, diet etc. are not allowed to enter.

 

[Kalliope]

Paul Garner has shared Live Landmark's opinion piece on twitter with the following text:

Nice Guideline for CFS/ME derived from activism, not research-from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process. Nice should hang its head in shame #CFS

 

[rvallee]

NICE be like: "let's have meetings and roundtables so everyone can have their say and present their concerns, surely everyone will see reason here about how the process was painfully followed".

Meanwhile:



Honestly at this point regardless of what this means for us, this guy needs sanctioning from his professional body. This is completely unprofessional behavior. Or as another dude put it, it's unbecoming.