NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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I suspect those inclined to the current approach will diagnose more pwME with fibromyalgia; the new NICE chronic pain draft gives them carte blanche to take a thoroughly BPS approach. Alternatively, they could add a diagnosis of a "somatoform disorder", adopt Fink's "bodily distress syndrome", or simply present CBT and graded exercise as ancillary, supportive therapies.

Speaking of the draft chronic pain guidelines, I've heard that at my local pain management clinic, all patients with a diagnosis such as fibromyalgia and CRPS, where pain isn't secondary to a known/objectively demonstrable process, as well as patients being treated for low back pain and some neuropathic pain conditions are being chart-reviewed with a view to de-prescribing, particularly opioids and gabapentinoids. A new pain management course is being held over Zoom, a new ACT therapist has been hired, some nerve-block procedures have been suspended, and all IV lidocaine infusions have been cancelled. Patients querying this have been told the changes are in accordance with the NICE guidelines for chronic pain, even though it's only in draft and many objections to that draft have been raised. If such changes occur in other trusts, they may affect many pwME dependent on analgesia for whom myalgia is a prominent symptom.

I'm not concerned about a judicial review - it would be difficult to argue that a decision made by a committee whose vice chair is a former president of both RSM and BMA could not have been made by any reasonable person - but I am concerned that there may be a media campaign in response to a decision adverse to the BPS position intended to discredit the result as an artefact of patient pressure; we are already so very stigmatised.

On an unrelated note, does anyone know the situation in regard to Scotland? I know NICE guidelines aren't directly applicable; is there a prospect of SIGN adopting the new NICE guideline in whole or in part?
 
Jonathan Edwards said:
I forget who the submissions are actually from. But putting in a submission following the draft is a different issue from a legal challenge. It costs nothing. The committee was never going to bow to anyone and I suspect that was known.

Briefing lawyers would be quite a task when you have no grounds.

Letting things go and creatively interpreting the new guidelines seems to me much more plausible as a strategy. But it means accepting that the academic programme has been scratched out.
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The cost of going to Court alone should force a rethink - at a wild guess I can't imagine it would be less than £100K. Not sure there's anyone in the mix who would put up the money. An insurance company should have "good" retained legal advisors and I guess they'd be advising not to go there - lose and you have to pay out all of those claims you disallowed!

I'm not sure that it would be difficult to find a lawyer to take it on --- provided they were sure of payment and didn't mind the reputational damage of losing!

Yes, it's looking like the latter.
 
Nightsong said:
On an unrelated note, does anyone know the situation in regard to Scotland? I know NICE guidelines aren't directly applicable; is there a prospect of SIGN adopting the new NICE guideline in whole or in part?
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I live in Northern Ireland [UK devolved administration] and vaguely recall having a brief exchange with the Health Committee i.e. re NICE guidance. I wasn't impressed that they referred to NICE guidance; I pointed out they didn't have to go with it - since health is a devolved matter. The Scottish devolved administration has a reputation for ploughing it's own furrow, so I'd hold some hope that it will take an independent stance --- at least adopt the revised NICE guidance or maybe go even further.
 
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InitialConditions said:
For what it's worth, I do agree in that there are a handful of ME patients who are not doing the community any favours. This seems to be an issue especially on Twitter.
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True. But also true of any community. The world has never suffered from a lack of nutters, obsessives, and arseholes.

Barry said:
BPS people who claim to be retired seem to keep coming out of the woodwork though.
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Some of the BPS cult's best work is done by retired believers. :whistle:
 
Barry said:
It certainly would. And being grilled by the other side's lawyers would bring a level of well publicised critical analysis they really would not fancy.
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At the last Judicial Review NICE lawyerded up and paid for a QC and all. There was quite a feeling of bias in the court room I thought with the NICE QC at the front of the court and being very chummy with the judge.

It would be entertaining to see any action brought by the dark side if it means 2 QC s going head to head instead of the earlier unfair match. I imagine some quite embarrassing questions could be asked in court.
 
ukxmrv said:
At the last Judicial Review NICE lawyerded up and paid for a QC and all. There was quite a feeling of bias in the court room I thought with the NICE QC at the front of the court and being very chummy with the judge.

It would be entertaining to see any action brought by the dark side if it means 2 QC s going head to head instead of the earlier unfair match. I imagine some quite embarrassing questions could be asked in court.
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At the same time, what I've read from that shows that some weak and misleading arguments were made to try to challenge NICE, and that undermined everything. I don't know exactly who was responsible for what, but to me it seemed that there was a real lack of quality control in the arguments made by the patients side and the verdict showed how harmful that can be.
 
Urgent help needed. Perhaps the committee can help or the patient NICE reps?
Where can the analysis of PACE can be found in the NICE Evidence Reviews please?

FINE was hard to find when I was working on feedback on draft - like just about everything else - because the reference numbers in the body of the paper don’t match the numbered refs in the references list at the end [Ev Rev G; not the appendices, H]
 
From an email from NICE.

Dear Stakeholder,

Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.
 
Andy said:
From an email from NICE.

Dear Stakeholder,

Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.
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So all the BPS cabal needs to do to push back publication to the year 23,398 is to keep sending in comments?
 
Andy said:
From an email from NICE.

Dear Stakeholder,

Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.
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Two contradictory possibilities come to mind:
  1. NICE are determined to get it right, and there is a lot of material to analyse and get to the heart of.
  2. There are forces afoot making waves, and manipulating delays in order to better further their cause.
I dearly hope it is '1'.
 
Andy said:
From an email from NICE.

Dear Stakeholder,

Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.
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This is ridiculous! They knew the number of comments received back in early January. We are just over a week until the embargoed report is released and they've just realised how many comments they have? I don't believe it.
 
InitialConditions said:
This is ridiculous! They knew the number of comments received back in early January. We are just over a week until the embargoed report is released and they've just realised how many comments they have? I don't believe it.
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Couldn't agree more! Another kick in the teeth for people with ME and their families, having to wait four more months before they can start to have a base from which to correct the mistreatment they have endured for decades.
 
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