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

Diane O'Leary is still at it:

https://twitter.com/user/status/1454477761465159684



Meanwhile, NCHS has proposals under review by the Director of NCHS for returning Chronic fatigue syndrome to the ICD-10-CM G93.3 location, under proposed new sub-code: G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome, with three proposed inclusion terms (as below), plus the proposal to add the SEID term to the ICD-10-CM Index, coded to the same G93.32 code:

G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome
Chronic fatigue syndrome
ME/CFS
Myalgic encephalomyelitis


Index term: Systemic exertion intolerance disease [SEID] G93.32
​

proposals about which she is silent.

 

her tweet & insistance in separating the too is really not helpful. as usual

 

She appears to believe that NICE's decision to switch the 2007 guideline title "Chronic fatigue syndrome/myalgic encephalomyelitis" to "Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome" for the 2021 guideline some how magics away the term, "Chronic fatigue syndrome", which, according to her, has now become a term exclusively the domain of psychs and for those patients who may benefit from psych treatments.

She has listened to nothing she was told on this forum.

Three posts have been copied and following posts discussing Diane O'Leary's views on CFS have been moved to a thread where here views were previously discussed here.

 

Fantastic opinion piece in the Norwegian newspaper Aftenposten by the professors Ola Didrik Saugstad and Rolf Rønning.

They start with sharing the news about the NICE guideline, and then provide some history (as Wessely, the psychosomatic approach), present research into ME, how ME patients have been mistreated (with emphasis on the children), and the importance of listening to patients and to take action to prevent more abuse towards the patients.

I hope the google translation is readable, because this was well worth a read!

ME-pasientene fikk rett!
google translation: ME patients were right!

Quote:
The report is a complete victory for ME patients' organizations and the professionals who have supported them. This should put an end to one of the biggest health policy and medical issues of our time.

 

We want proper clinics set up to treat ME where the symptoms we actually experience are treated and PEM and energy management or whatever you want to call it are at the forefront and the long list of problems we have investigated.

But this will leave a hole in the medical provision for people who have fatigue without ME. Constant fatigue needs researched and treated and fatigue as a secondary symptom of established disease can be the most disabling for the individual.

I have never had any problem with them wanting to find out about constant fatigue, just the fact that they made ME/CFS disappear. The current treatments don't work but finding something that did would make the world a better place.

In the same way that ME was trivialised by calling it CFS when that does not come close to describing it, chronic fatigue needs its own disease category and CFS would have been a good name.

The confusion spread by the BPS and the damage it has done are immense.

 

Been in the woods for weeks, but managed to read Saugstads piece today, and understand that NICE reached some kind of conclusion.

Will read that and all comments later, but for now, I hope this will benefit all patients, and probably most of all patients in the future to come. It is paradox, not a lot to ask, but maybe we’ll finally see the day going from first of all do harm which has been the grim reality, to a day that first of all do not harm, also includes ME-patients

 

Chartered Society of Physiotherapy: NICE publishes new guidance about ME/chronic fatigue syndrome

"The publication of the new guidelines follows a delay to the guidance earlier this year. At the time the Institute explained that this was due to the complexities surrounding the condition, meaning they had been unable to gain comprehensive agreement and support for their updated recommendations. This has now been resolved.

Commenting on the publication of the new guidelines, Natalie Beswetherick, director of practice and development at the Chartered Society of Physiotherapy, said:

‘It is very welcome that a consensus has been reached and the guidance can now be published after what has been an understandably fraught process.

‘It is vitally important that people living with ME receive personalised care that is built around their needs, especially where physical activity is concerned."​

 

I think a lot of work needs to be done to get physios as a whole to see the needed shift. Hopefully PhysiosforME can make headway. This statement seems unhelpful.

Why was the process 'understandably' fraught? It was fraught because certain people were holding on to vested interests and didn't understand the evidence base. Why is that 'understandable'?

The second statement really just says 'It is vitally important that physios still have a job to do. Let's forget we have no evidence.'.

I would like to see something much more insightful - as we have had from the OTs and from BACME and indeed from PhysiosforME.

Personalised care is consistently being used to obfuscate. How do you personalise treatment when there is no evidence for any of the options? At least it may mean that therapists listen to the patient rather than just giving out some gym instructions but it is being used to avoid confronting the real problems.

 

https://twitter.com/user/status/1455539187092971531


PEM is not even mentioned on the NHS England website.

 

it is time that people understood that most of the mystery and controversy about ME/CFS is due to the BPS ideologists continually confusing the issue.

The disease exists and medicine does not have a better understanding of the process because of lack of funding for research. It is no more mysterious than AIDS was when it first appeared.

 

Perhaps some see this as trivial, but it’s actually disrespectful. PEM is the symptom that causes profound disability.

 

Voilà !

 

The big question over this is how to root this out entirely, instead of having to fight it piecemeal. Needless to say that this is complete dereliction of duty of candor, but that's nothing new so I don't know how much weight this has. Apparently none, honestly, given the incredible display of dishonesty in the submissions.

https://twitter.com/user/status/1456282557612449793

 

This person at the clinic is clearly in contravention of GL rec 1.11.11:

"Tell people about the risks and benefits of physical activity and exercise programmes. Explain that some people with ME/CFS have found that they can make their symptoms worse, for some people it makes no difference and others find them helpful."

This is the same section that also says you cannot offer GET. So if it's not-GET called GET, then how can they accurately advise patients on harms and how can those patients give informed consent? It's a complete no man's land.

Personally, I'd write to the CCG with reference to the new GL and say that this is a) contradictory and b) opaque. You could also write to BACME, who have now endorsed the GL. They may have a quiet word at the very least (and may be more sympathetic than the CCG).

 

Won't happen without a complete overhaul in thinking imo. These clinics see themselves backed by the RC's who don't give a crap about any actual evidence which creates this mess. At least we have a decent NICE guideline with which we can fight back now. But chronically ill people should band together to have non-evidenced treatments removed completely as an option. Which should start with the evidence offered actually getting a fair review on all flaws.

 

As Sally and I said, several committee members surprised us. But it's hard to know whether they changed their minds for sure.

Maybe some of them shifted a bit more, rather than doing a full 180. We didn't have any in-person meetings after COVID happened, so it's difficult to guage.

But if you've dedicated your life to something, it's hard to let go of that. So I can also see why people will cling to things even in the face of a lack of evidence (e.g., they may just convince themselves that it was their own fault for not providing enough evidence, making them even more determined to get more evidence for next time).

In general, you can't convince people by telling them that they've been hoodwinked or are misinformed. When you engage an antivaxxer, for example, evidence just makes them dig their heels in. They need to, at some point, realise the truth for themselves and on their own terms.

I suspect that if anyone does jump ship, it'll have to be on their own terms, too, after things have calmed down, when they can save face and avoid cognitive dissonance.

 

This article is more incisive than anything on offer in UK mainstream press. Where false balance and deference to powerful establishments abounds. In contrast here is a clearer picture of the whole, even translation.

The author is very well acquainted with the subject and uses this knowledge to great effect. They bring their personal connection to this injustice and use this to do justice to the subject matter.

Thank you for sharing.

 

Trial By Error: King’s College London Is Still Hyping “Bespoke” CBT for CFS as “Recommended” in UK

"A week ago, Britain’s National Institute for Health and Care Excellence published its new, evidence-based guideline for ME/CFS, which recommended against graded exercise therapy and cognitive behavior therapy offered as curative rather than as supportive care. Not surprisingly, this event decision creates some public relations problems for members of the CBT/GET ideological brigades, who have spent years promoting their dysfunctional beliefs that their favored interventions can cure the illness.
....
So what does that mean for, say, King’s College London, which emits a geyser of sub-par work in this field and is home to Professor Trudie Chalder, a lead investigator of the PACE trial? KCL has touted and sometimes flagrantly misrepresented the results of Professor Chalder’s studies. Given that NICE has essentially relegated the CBT/GET treatment paradigm to the dustbin of research history, the university might have to reconsider how it presents key information.

For example, why are there still active pages like this one hosting an article headlined “CBT for chronic fatigue syndrome”? Here’s the sub-head: “Our researchers were among the architects of bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.”

Hm. Not quite accurate at this point. Keep up, KCL!"

https://www.virology.ws/2021/11/05/...ing-bespoke-cbt-for-cfs-as-recommended-in-uk/