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

[Hutan]

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.

It's not even the lack of professionalism in the way he flings accusations around that makes me shake my head in disbelief. It's that someone who holds a professional role titled 'Co-ordinator, Centre for Evidence Synthesis for Global Health' can look at the evidence and come to the conclusion he has. He has a grant of $7 million pounds for a Research, Evidence and Development Initiative; he teaches post-graduates research synthesis. He has no excuses.

 

[Barry]

It's not even the lack of professionalism in the way he flings accusations around that makes me shake my head in disbelief. It's that someone who holds a professional role titled 'Co-ordinator, Centre for Evidence Synthesis for Global Health' can look at the evidence and come to the conclusion he has. He has a grant of $7 million pounds for a Research, Evidence and Development Initiative; he teaches post-graduates in research synthesis. He has no excuses.

It is also very eye opening, because he perfectly illustrates the sort of "scientific expertise" that has been so disastrous for patients, science and medicine all these decades. How can people so devoid of basic common sense ever get to such positions of influence?

 

[Midnattsol]

Aftenposten continue their ME-debate on the new NICE guidelines, this time with an opinion piece from Recovery Norway with the usual babble about activism, recovered patients not being listened to, misinterpretations of the evidence, it is dangerous to take away hope etc...

Ikke ta fra ME syke håp. Dette er alvorlig og farlig
Do not take from ME patients the possibility of treatment that works

Huh... when I added it to google translate the title was changed, and now it is changed in the Norwegian version as well. The original name translates to "Don't take away hope from ME patients. That is is serious and dangerous".

 

[Kalliope]

Aftenposten continue their ME-debate on the new NICE guidelines, this time with an opinion piece from Recovery Norway with the usual babble about activism, recovered patients not being listened to, misinterpretations of the evidence, it is dangerous to take away hope etc...

Ikke ta fra ME syke håp. Dette er alvorlig og farlig
Do not take from ME patients the possibility of treatment that works

Huh... when I added it to google translate the title was changed, and now it is changed in the Norwegian version as well. The original name translates to "Don't take away hope from ME patients. That is is serious and dangerous".

just adding a few google translated quotes:

We represent Recovery Norway, an association which among other things consists of people who have had ME/CFS, and who have recovered by using techniques that are about changing thought and behavioral patterns.

The process behind the Nice report is highly reprehensible. Nice has been under massive pressure from ME organizations. This pressure has been so great and stressful that experienced professionals have withdrawn . This has led to the scientific basis being selective and not reflecting the entire field. This has resulted in a report that fits the ME organizations' narrative of ME as a "physical illness", ie not influenced by techniques that deal with changes in thinking, emotions, behavior and physiological stress responses.

...

The NICE process is very serious. It can have consequences for Norwegian patients if the Norwegian health authorities do not take it with a pinch of salt.

In the fight for ME / CFS to be seen as "physical" and "real", ME organizations - and actors such as Rønning and Saugstad - deprive ME people of hope for improvement from treatment options that have helped many. This is serious and dangerous.

 

[Kalliope]

Yesterday @mango shared in the Scandinavian thread an opinion piece about NICE written by Sten Helmfrid, the chair person and the vice-chairperson of the Swedish ME Association. The opinion piece was published in the Journal of the Swedish Medical Association.

It has now been translated into English and is available at Researchgate:
Let the new NICE guideline for ME/CFS be a turning point

 

[MeSci]

It is also very eye opening, because he perfectly illustrates the sort of "scientific expertise" that has been so disastrous for patients, science and medicine all these decades. How can people so devoid of basic common sense ever get to such positions of influence?

I don't know, but they do, for example Simon Wessely...

 

[Kalliope]

Aftenposten continue their ME-debate on the new NICE guidelines, this time with an opinion piece from Recovery Norway with the usual babble about activism, recovered patients not being listened to, misinterpretations of the evidence, it is dangerous to take away hope etc...

Ikke ta fra ME syke håp. Dette er alvorlig og farlig
Do not take from ME patients the possibility of treatment that works

Huh... when I added it to google translate the title was changed, and now it is changed in the Norwegian version as well. The original name translates to "Don't take away hope from ME patients. That is is serious and dangerous".

The opinion piece is shared by Garner on twitter with the following text:

- Nice corrupted. Recovered patients not heard. Recovery Norway challenges NICE guidance for rejecting useful treatments that deal with "changes in thinking, emotions, behavior and physiological stress responses." #MECFS

 

[Barry]

The opinion piece is shared by Garner on twitter with the following text:

- Nice corrupted. Recovered patients not heard. Recovery Norway challenges NICE guidance for rejecting useful treatments that deal with "changes in thinking, emotions, behavior and physiological stress responses." #MECFS

In a perverse way I think this is beneficial in the longer term, because once someone in Garner's position comes flat out slamming NICE like this, and relying on trashy opinion pieces to back up what he is saying, it demonstrates so very clearly to NICE what pwME have been up against for decades. Makes it very clear just who the real abusers of good science are. Spewing this infantile abuse at NICE will, in due course I'm sure, come back at them as sure as if they were vomiting into the wind; the whole BPS bunch hopefully getting their fair dose of the splashback.

Does make you wonder how Cochrane feel about one of their Co-ordinating Editors hammering into NICE so insultingly, unprofessionally and unscientifically, given their intent to merge. Maybe they should consider giving him the push.

 

[Jonathan Edwards]

Maybe they should consider giving him the push.

If we're going to be nautical - walk the plank?

 

[Kalliope]

Some years ago the Norwegian Research Council put aside 30 million NOK for research into ME. They invited the public and users of research (which could be carers, patients, clinicians - anyone) to come with suggestions and wishes for what kind of research projects the money should fund.

The research council had a rigorous process which in the end resulted into financing four great ME research projects in line with the feedback from the public.

Of course there were many more applications than those four who received funding. One of them was an application to fund a study on Lightning Process. Live Landmark threw a tantrum when the LP study didn't receive funding and came with lots of accusations to the research council and their process, same as she's doing now towards NICE. In the end the research council wrote an opinion piece themselves answering to the accusations.

Do you think NICE will do the same and respond to Landmark's opinion piece?

 

[NelliePledge]

I would be concerned that NICE responding would be seen by some as boosting her credibility.

 

[Kalliope]

The opinion piece by LP coach Live Landmark received a response from two Masters of Science and ME patients. The response have been translated into English and published on Science Norway.

Benedikte Monrad-Krohn/Øistein Jansen: Patient activism is not being the British guidelines for CFS/ME

Quote:
Everything NICE has done and assessed is transparent and can be read on NICE's website. It is quite a job, there are several thousand pages of evidence evaluations of all available research, the report is the result of three years of work.

It is especially the assessments of non-pharmacological treatment in Appendix G that are disputed. NICE reviewed hundreds of studies of non-pharmacological treatments and found these studies to be consistently of poor quality, using the evaluation tool GRADE. Landmark refers to a comment in the British Medical Journal from Jason W. Busse and others, claiming NICE used GRADE incorrectly, but the claim is refuted and explained as unfounded by Michiel Tack.

This time Science Norway is tagging NICE when sharing on Twitter. When they shared Landmark's opinion piece, they tagged the Guardian.

 

[Kalliope]

I would be concerned that NICE responding would be seen by some as boosting her credibility.

That's a very good point, yes.

 

[Trish]

I doubt NICE would respond in the Norwegian media. I hope they will alert Cochrane that one of their senior editors is bringing Cochrane into disrepute and jeopardising any merger of Cochrane with NICE unless he is removed. Maybe it will have the beneficial effect of scuppering the merger.

 

[Barry]

Do you think NICE will do the same and respond to Landmark's opinion piece?

I would be concerned that NICE responding would be seen by some as boosting her credibility.

I don't think NICE need to nor should do. NICE have done nothing they need to defend. This stuff is not worthy of their attention ... which I think is what Garner maybe craves.

 

[Wonko]

Does PG hve tips on how to produce non sticky mud that he could share.

 

[rvallee]

Huh... when I added it to google translate the title was changed, and now it is changed in the Norwegian version as well. The original name translates to "Don't take away hope from ME patients. That is is serious and dangerous".

Our only hope is research. It has already been taken away from us. So this argument is offensive twice over. This is the result: millions of broken lives.

I honestly can't believe this is happening right alongside Long Covid. Shows how we did not stand a damn chance of there ever being progress at the pace we were doing before. Even with, I'm not so sure, seeing how medicine has genuinely drunk the Kool-aid (Flavor-aid really, but whatever) and is willing to put up with failure by sheer tradition, no matter how many more lives are destroyed.

Also you do have to question the ethics of newspapers who publish this. They are doing it purely for the entertainment value and click outrage. Revolting.

 

[rvallee]

Not much point to posting this other than there is clearly an organized campaign happening, uses roughly the same wording. The first sentence is identical. Carson is another one of the gang, so it doesn't seem to have much outside support, not visibly anyway.

I'm sure there is more coming.

 

[Sly Saint]

 

[Barry]

Not much point to posting this other than there is clearly an organized campaign happening, uses roughly the same wording. The first sentence is identical. Carson is another one of the gang, so it doesn't seem to have much outside support, not visibly anyway.

I'm sure there is more coming.

The more the merrier. The more they demonstrate an orchestrated campaign using the same wording and naff arguments, the more and more they shoot themselves in the foot.