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

Full text

https://twitter.com/user/status/1422558835663937546

 

And Garner's comment is so true:

“What is serious is that those resigning are some of the most respected service providers for ME/CFS services in the country. This can only mean that the disagreement is fundamental to care of people with ME/CFS, in terms of what works and about the balance between health benefits, side effects, and risks of approaches to help people improve and recover.”

Yes, it IS serious. If these people are the most respected, and a group chosen to be 'interested but disinterested' think they got things wrong, things really are serious.

 

I’m far more encouraged today seeing this lot walking out, than I was yesterday when just CS was ejected.

Could it be that CS was sufficiently satisfied that the draft wasn’t going to be fundamentally changed that he was considering stepping down sooner (as he noted in the MEA release)?

The social media post that seems to have caused CS a problem, I think, suggests that NICE we’re dropping CBT/GET so he may have let the cat out of the bag and had to go - hence not appealing.

And potentially the other three have thrown their toys out because they haven’t got their way and are lining up with Wessley and chums to say it was all a stitch-up.

The MEA release yesterday though, was carefully worded, but they would have known this would inevitably have caused pwME a load of anxiety, which probably couldn’t have been avoided, but maybe they needed to get it out their quickly that he was ejected before the others were noted to have quit.

It’s not done pwME much good though, this review feels like a once in a generation opportunity to reset the narrative, we have so much at stake and there is already enough anxiety about the 18/8 to go around without this..

But with the CDC in the US seemingly backtracking on CBT/GET, one could be forgiven for thinking there is a global conspiracy to crush the ME is a biological illness fact..

 

Yes. Let us not forget this this is the same Paul Garner who wrote: “Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19.”

I appreciate that Paul Garner has contradicted himself since his recovery, but the people who have resigned are among those responsible for the institutionally prejudiced services he described.


[edit: link to PG’s BMJ blog that I quoted: https://blogs.bmj.com/bmj/2020/06/2...d-cameras-unknown-limits-and-harsh-penalties/]

 

On MEA fb page a short time ago, Dr S , in response to a question said that while Nice is continuing its work without the 3 members who have resigned "it will clearly be more difficult for Nice if there are any further resignations."

 

I'm not very surprised that some committee members stepped down given the background of some. Hans Knoop did the same just before the Dutch guidelines were published.

It seems that other BPS proponents such as Burton, Stanton, and Daniels have not stepped down. This might indicate disagreement.

 

It seems eerily reminiscent of a previous incident. Was it the 1996 report, when it seemed that progress was about to be made but all the psychs walked out. Garner should remember that when he talks about the need for agreement and unity.

At least this seems an altogether more positive development. In this context the standing down of CS seems quite astute.

 

There was something last week that said that NICE was forced to take another look at the 2007 guidelines because of pressure from the ME Association - those awful activist patients again.

I wonder if it is all connected.

I think it was the Chief Medical Officer's report that Peter White resigned from because it did not go far enough in the BPS direction yet he was still the one who got all the research money to do the PACE trial.

I am poised for crushing disappointment as we have seen it all before.

Usually I would put something slightly optimistic at the end but I realised that even if the guidelines look good I still won't trust things to get better for us. Sorry.

 

Keith Geraighty shared BMJ Editor, F Godlee, said this recently so still ignorant.

 

The BMJ comes off as especially offensive and clownish here, misrepresenting most of the basic facts in a way that frankly should require a referral, if there is some authority that even cares about this stuff. Someone has to answer for this stuff, can't hide behind a freelance "journalist", what BMJ publishes is what BMJ agree with so this is the editorial position of the organization.

The article says it's not clear why the assessment of the evidence changed so much. It actually is: it was reviewed. This is a process known as science, which clearly the BMJ is not quite familiar with as this is how it always goes, so the expression of surprise is frankly odd and embarrassing.

And the obvious issue is not what changed but rather why was such a misleading pile of garbage based on mediocre evidence was published in the first place. But since the article is genuine disinformation, yellow journalism, it presents it in the most possibly biased way, including yet again blatantly misrepresenting opposition from the patient community as the work of a few, which they know is false but say it anyway. Because clearly there are no consequences for a medical journal publishing patient-hostile disinformation so they keep doing it.

So it seems this will be the strategy moving forward: discrediting the entire process. And with the BMA putting their weight behind it. All normal things. Petulance looks just the same no matter who does it, but this could not look any more political and hopefully the increased scrutiny makes the petulance strategy misfire. We all knew this was coming, but what this shows is that these people genuinely don't care what the evidence says or what happens to patients, they only want one thing out of this and it's to push their idiotic belief system, no matter the consequences.

Also: The BMJ is trash. What kind of clown organization are they running over there?

 

I think the point is to rile up medical professionals while avoiding too much public scrutiny. Call to arms.

 

CMO report. PD White, Chalder and a couple of others resigned late as pacing was also being recommended.

They had at that stage got lots of concessions.

Also it was another reason to think that White and Chalder weren’t the best people to run a major trial comparing a form of pacing to CBT and GET.

 

It is interesting that the article stresses the number of patient reps, 5, on the committee of 21. Now that 4 have resigned or stood down that leaves 17. In order to obtain a majority the patients would now only need 4 to vote with them CS was a non voting member so his absence makes no difference to that.

It looks to me as though they have done the arithmetic and seen that they don't have the numbers, and so by resigning they create the perception that the numbers are skewed in favour of the patients.

 

Brian Hughes comments the BMJ article

 

I'd thought that the journalist had been less prejudiced than the BMJ norm in an earlier article. This new one seems more in keeping with the BMJ's usual approach.

https://www.s4me.info/threads/bmj-pressure-grows-on-lancet-to-review-“flawed”-pace-trial.5444/#post-98243

 

oh dear.... what a calamity, the huge number of.... shock horror, LESS THAN A QUARTER.... of the committee making decisions about us, affecting our lives, our health, was made up of people representing us.... how terribly unfair and skewed in our favour.

But actually thats wonderful, that a quarter is now considered in effect a majority influence. I cant wait for other things where those that i favour get a quarter of the vote, they will have obviously won, while those getting 3/4 of it will clearly be the losers.

Whats that you said Alice? You cant find the White Rabbit? Well we're in his hole so he must be around somewhere.