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

[Esther12]

 

[dave30th]

Unbelievable. But then kind of believable too.

Yes, as with everything, shocking but not surprising.

 

[Kiristar]

Have people seen this horrendous statement?
https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs

It reads to me like they're saying they'll carry on with exercise programmes the way they're doing as it was never GET as NICE define it in the first place (so how did GET get a bad name then, has NICE stuffed up its description?? ).

Plus that they know best what patient groups want (perhaps patient groups actually speak for themselves?? )

In the rest I suppose they want to show they are too important in order to prevent service commissioners to decommission their control of the service and put it elsewhere?

So utterly depressing at the end of a long day. Just makes me want to cry. Will it never end?!!

My GP recommended one of these "institutions" due to my decline. Now terrified to seek any medical help in case I get referred "for my own good" . Just praying these places get decommissioned for ME patients but fear I'm more likely to see a pig flying past my window. The more I read the more horrified I get.

 

[Samuel]

i am possibly reading too much into this quote from bacme, but thought i would point out the possible connection just in case.

bacme> ...provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.

for example, "more refined" is a strange one there. a biomedical researcher intent on finding truth and a treatment is less likely to be trying to refine, than to find truth and a treatment.

this is because there are basically no disease-modifying or even particularly good treatments for pwme in general.

some sometimes find some treatments useful, sometimes dispositively, for some purposes. metoclopramide can save your life if you have gastroparesis. perhaps bacme would point out that its use is in need of refinement.

but a treatment for m.e. would not be likely described as refining metoclopramide for those who have gastroparesis. it might obviate it. or it might reduce its need.


i am saying refining m.e. treatment is the wrong term. what, precisely, is to be refined? the existing set of treatments for symptoms/diseases? that seems unlikely. why isn't bacme supporting the main thrust of research? pathophysiology.


the above is the negative argument: i am saying it isn't the statement we need from bacme. i will now make the positive argument that the statement supports what we do not need. i.e. i consider it potentially suspicious.


we have recently seen, and probably will continue to see, a procession of papers that try to locate hysteria in the brain -- i think this is a decent description. the statement seems more consistent with that.

interoception, reward insensitivity. this comprises a sometimes unstated broad set of "theories" consistent with the usual attempts to take over medicine. [misopathy is not constrained by logic, ethics, occam, or darwin.]

also we have seen the r word before. we have seen continual "refinement" of talk therapies and get. with that word used. usually in the form of we came up with [some nonsense] and this needs further refinement.


it might, then, be something like, you get more refined talk therapies that are informed by brain function.


[moderators please feel free to refile under bacme something or a brain hysteria thread or whatever. [i might circular file it -- not sure if this is relevant or that i am informed enough. just have a sensitive word-ometer like we all. but what do i know here? can't follow it.]]

 

[DigitalDrifter]

Science for ME commended their efforts and the resulting guideline, saying, "we believe it will lead to significant improvements in the care and support for the estimated 250,000 people in England and Wales with ME/CFS.

I've said this before but I think it's worth repeating.

That 250,000 figure is based on a fraudulent definition of ME (Most likely the CDC 1994 Criteria). See my post here (https://www.s4me.info/threads/me-ep...set-and-gender-ratio.10373/page-4#post-384510).

For example this study (https://pubmed.ncbi.nlm.nih.gov/21794183/) gives a prevalence of 0.19% based on the CDC 1994 criteria which I don't classify as being real ME. Even with that too broad criteria that would make only 129,865 ME patients in the UK, just under half of population @Hutan claimed had ME.

Inflating the numbers is really bad for credibility of real ME patients. If there are over 100,000 misdiagnosed as having ME all claiming exercise didn't worsen their condition or even led to improvement, it's going to make us sound like delusional conspiracy theorists.

Here's (https://www.s4me.info/threads/non-e...-psychological-me-research.18266/#post-311840) a post from the late Graham agreeing that the 250,000 figure is wrong.

I searched lots of ways to estimate the numbers, and tied it in with estimates of rates of incidence combined with a negligible recovery rate. This was in another thread, and @Trish helped me out with the sums. I would reckon on around 150,000 patients in the UK: perhaps even as low as 120,000. The study that used three GP practices to estimate prevalence struck me as being the most realistic.

I really think using inflated figures for prevalence is shooting ourselves in the foot.

 

[Simbindi]

I'm still hung up on the idea that activity management needs to be 'graded'. and what sort of person would think this is better than 'activity management' advice.

I think it is a name for what the Torbay and South Devon service seem to have been doing under the 2007 guidelines. I haven't even been able to read through their patient 'manual', it is so long and detailed it is exhausting in itself and what it appears to be requiring patients to do is micromanage every aspect of their lives (grading every activity and what is done every half hour). 'Barmy' is all I can say. It's all about fatigue management, no other ME symptoms are even mentioned. They've taken the 'battery' analogy and raised it to the level of the physiological explanation of ME itself. In this sense, I can see that the 'dysregulation model' is the 'safer' one for ME patients as at least it recognises complexity happening.

https://www.torbayandsouthdevon.nhs.uk/uploads/25262.pdf

 

[Hutan]

A conversation about the origins of the name of the conference centre where a BPS conference was held on the day the Guideline was published has been moved here:
A thread of no importance. Post something completely inconsequential.
No judgement about the quality of the posts should be inferred from the title of the thread ...

 

[Art Vandelay]

There is a guideline on ME/CFS being prepared in the Netherlands and the plan was to take the NICE guideline as a starting point.

The NICE guideline will similarly be used by the NHMRC in Australia for long overdue clinical guidance here.

Doctors here are particularly bigoted regarding ME patients and the media are scientifically illiterate, so eminence usually trumps evidence. I imagine they will highlight the nonsense from the Royal Colleges.

 

[Sean]

Australia is a mixed bag for doctors. Covers the spectrum. Mostly luck of the draw. It is easy enough to change doctors here, GPs at least, if there is another one nearby.

 

[Dx Revision Watch]

Stop bragging everyone will be trying to get blocked --- badge of honour!

I still have Prof Wessely Following me and as far as I can see, he's said nothing so far about publication/content of the guideline.

 

[Dx Revision Watch]

No Rapid Responses yet to either of the two BMJ 29 October reports.

 

[Invisible Woman]

The conversation has probably moved on so please excuse me if this has already been said.

Regarding some of statements on the new guideline written by the pro BPS crew -

If they had already stopped following the old guidelines by using a different form of treatment and simply giving it the same name then why did they not take the opportuniy in 2017 to try to update the guidelines? Why were they happy to simply carry on pretending they were following NICE's guideline instead of having it adapted to reflect the treatment they beiieved worked.

I reckon the answer is they knew they couldn't prove efficacy or safety. What's more they didn't want to knock the flagship BPS treatment and rollout of CBT for all ills.

However if they sincerely believed their modified treatments were better and that the term GET should be redefined why not take the opportunity to do so officially and following the proper process rather than just modify the treatment and pretend it's the same thing. Ultimately risking action being taken against the health trusts they work for.

They claim they don't do old style GET anymore. Why did they start to change their approach? They don't seem to believe in or have recorded harms, most clinics don't do follow up to see of patients returned to work or came off benefits. So what evidence had they that GET as defined previously didn't work? Having modified activity therapy what evidence do they have this new approach works better? If they have evidence, where is it?

In failing to take the opporunity to push for a new, updated guideline in 2017 (assuming their altered treatment is better) they have left patients in a lottery postcode. The type of thing NICE was set up to avoid. Why not push for standardised of the modified treatment across clinics throughout England? If they believed they had improved the treatment why not allow all patients to benefit by standardising care?

There's been some waffle about patient mental health. Is it not in the best interests of patients to know, be assured, that they will have the best possible care regardless of which clinic they attend? That it's not pot luck whether they get old style GET which apparently some clinics believe doesn't work or the new modifies kind that is better?

I think some of the statements made show clear intent to ignore and treat patients in a manner that is inconsistent with the current structure and safeguards. If clinics are genuine in their beliefs about treatment they should have taken the opportunity when it arose in 2017 to put that right.

 

[Kalliope]

This refers to the NICE guidelines, but as dr. Asad Khan brings in the aspect of Long Covid in his tweets, I figured this was the best thread. Interesting, but not surprising, what he's saying about silent colleagues who have worried about linking ME to Long Covid and the reason why. I hope he's right in that some are now shifting.

 

[Andy]

Can someone remind me, did the Royal Colleges oppose the update to the Guideline? And, broadly, what their stakeholders submissions were? Because my bet is that there is a serious lack of internal logic in their arguments.

 

[CRG]

As the NICE guidelines are classed I believe as advisory and not binding, would this weaken citing them in any court case by an individual claiming harm by being prescribed GET?

All the usual caveats about needing expert legal advice on a case by case basis apply ! But - yes the Guideline does not trump clinical freedom. However if harm is demonstrable (which of course it may not be to a legal standard) then the Guideline would serve as a sort of negative indicator of clinician competence - "why go outside the Guideline if harm was likely and the probability of benefit low ?" etc.

 

[Kitty]

Section: “Who is it for”. Comment: It is our opinion that there is not sufficient information in this guideline to support the listed professionals to deliver an intervention

Do we think it might eventually dawn on them that there could be a reason for this?

 

[anniekim]

In NICE’s article on the new guidelines posted yesterday Baroness Finlay, vice chair of the NICE ME/CFS guideline committee, is quoted saying ME causes disordered energy metabolism. I think it’s a useful quote but is anyone able to direct me to what evidence in the guidelines evidence review they think she is using to make that assertion? Possibly the 2 day CPET studies?

 

[Joel]

This guideline is a great victory. Well done everyone who has made it happen.

We’ve won the battle but not the war yet, it seems to me. The clinics will try to carry on, just rebrand away from GET and toward non-fixed “paced” activity. Probably they will even drop the word activity. Nothing meaningful will change if they get their way.

The next battleground is commissioning, to dump the bad practice and genuinely shape clinics to adopt the new guidelines in ways that actually serve patients. Are patient orgs working together on this yet?

 

[Andy]

Are patient orgs working together on this yet?

Yes, they are aware that this is the next challenge and are working on it.

 

[anniekim]

bacme> ...provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.

@Samuel, is this BACME quote from the stakeholders comments? Many thanks.