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

And now Lightning Process coach Live Landmark is also weighing in in the debate about the NICE guideline.. It's in the same newspaper as the other opinion pieces about same topic.

Helsedirektoratet må tåle presset fra ME-pasienter
google translation: The Norwegian Directorate of Health must withstand the pressure from ME patients

When creating guidelines, it is common to put together a professionally competent group. Nice set up a committee of 21 people, a third of whom were ME patients, relatives or from ME forums and ME associations. The rest had a personal commitment. Guidelines must be based on the best possible scientific basis, however, key researchers with relevant expertise were not invited.

...
Nevertheless, the members of the committee chose to agree on new diagnostic criteria. They then used these as a basis when evaluating previous studies. The consequence was that all previous studies were downgraded using the Grade scientific method system .
Since most studies evaluating the effect of cognitive therapy (CBT) and graded exercise (GET) have been performed on patients who met other diagnostic criteria, these studies were graded to be of "low" or "very low" quality.

And suddenly there were no studies of "good" quality.

...

A natural consequence would be to say that there is no scientific basis for creating guidelines for ME. Instead, the members of Nice chose "to listen to the patients".

That is, they used qualitative studies and the ME associations' online user surveys to create guidelines. But then they completely ignored all diagnostic criteria. The result was "experiences" from patients who may not even meet any diagnostic criteria, because they have diagnosed themselves with ME.

It is these experiences, along with the members' personal opinions, that make Nice move away from Cognitive Behavioral Therapy (CBT) and do not recommend either Graded Training (GET) or Lightning Process (LP).

 

The Danish local newspaper Ugeavisen Esbjerg has covered ME (particularly severe ME) many times, and has now interviewed the parents of a severely ill woman about the NICE guideline and its implication for ME patients in Denmark.

ME-familie: Det kan forandre alt
google translation: It can change everything

quotes:

- Had the new guidelines from NICE been in force in Denmark a few years ago, many of the abuses our daughter has been exposed to could have been avoided, but it is gratifying that many other patients can now be spared the same abuses. We hope that all the recommendations from NICE will be implemented in Denmark without hesitation. They are ready to lead into life. This will mean a colossal improvement for ME patients and their relatives, say Vibeke and Esben Ilsøe Gustavussen.
...

- In Denmark, as Nice now dictates, it is necessary to recognize that in the treatment of the ME patient, be it both in the care and treatment of the patients, permanent damage can be done. It happened to our daughter Marie Louise. And it happens daily in the patients' meeting with the hospitals, the general practitioners, at the on-call doctor, in the job center and in the municipalities. But now there is hope for change. The new guidelines from NICE can change everything for ME patients and their relatives, says Esben Ilsøe Gustavussen.

 

Thanks Ms Landmark, it is always useful to have further evidence of your lack of understanding of science. It may be useful for my book too.
Interesting how remarkably similar to some comments from Royal Colleges these are.

Whose voice do I keep seeming to hear in the background here? Someone in a prominent public position who believes that alternative facts are always a good way to counter real facts?

 

Is there someone in the background orchestrating all this? It is clear that people are trying to "disappear" the new ME guideline as fast as they possibly can.

 

It is usually the other way around, with the BPS'ers setting the agenda with all kinds of strange stuff. This time it was the professors Saugstad and Rønning who started the debate with a great opinion piece, and now the BPS'ers for once, are the ones who must try to put out the fire.

 

Yes, this does have eerie echoes of other strange happenings, a year ago.

 

Someone with a nautical bent and tenancy to analogy? Someone warm, humorous with a string of noble titles..... in the family?

 

Sorry can you elaborate? I don't remember what this refers to

 

I was straying into politics way outside the realm of ME, which is not allowed, so I can't elaborate I am afraid!

 

Ditto.

 

Not so long as a year.... https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy 2021....

 

The wallaby who lied showed up under related stories...

https://www.theguardian.com/commentisfree/2021/nov/12/once-upon-a-time-there-was-a-wallaby-who-lied

 

https://twitter.com/user/status/1459129099344035842

 

This video is a great idea. Well done, #MEAction!

 

Will remove if already posted in a related thread:

This relates to clinics still offering CBT/GET:

https://twitter.com/user/status/1458059382361661447


https://twitter.com/user/status/1459180569028407300

 

The clinics are allowed to offer physical activity and exercise programmes but not GET, which only makes fixed incremental increases in the time spent being physically active. I think they can still provide GET when the approach is patient-centred, flexible and gradually increases the time spent being physically active once a stable baseline has been established. The guideline says not to offer graded exercise therapy and then clarifies which type they are not recommending. Whether they can or not still call ME exercise/activity programmes GET seems a bit open to loose interpretation.


*Edited: for clarification*

 

If flexible activity/exercise programmes are allowed to be called GET, which the clinics offer to PWME, technically, they are providing NICE recommended GET as it’s the approach recommended.

If the above is correct, it seems problematic as most people associate the term GET with the version used in the PACE trial. I'm wondering if it could also confuse ongoing evidence presentation, just like during the guideline development process when it was suddenly announced that the clinical GET evidence was not the same approach used in the PACE trial?

Plus, it currently looks like some clinics offer therapy programs to people with fatigue caused by various conditions, and some are using the Fukuda diagnostic criteria. Based on an operation like that, it seems possible there will be people who don't have ME/CFS being recorded amongst people who do within their research but are able to withstand more upward increments in exercise/activity.

https://www.cpft.nhs.uk/download.cfm?doc=docm93jijm4n944.doc&ver=1259

https://www.elft.nhs.uk/service/419/Bedfordshire-Chronic-Fatigue-Service#:~:text=How to-,refer,-We only take