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

You'd think so, but it's never been noticed before, by anyone who counts e.g. rational people.

 

The thing is, who is all this actually aimed at? It feels like PG and others get off on baiting sick people (now there's a mental image I didn't want), cos other than his chums who may share the same views, in the grand scheme of things, no-one gives a hoot about ME or us that suffer from it. Is he just out there to add to his list of people he's blocked on Twitter? Maybe there's some Christmas sweepstake amongst the ME deniers to see who can have the highest blocked count by the end of 2021..between PG and MS, there's a decent completion going on I suspect.

 

totally agree, he has two twitter profiles, one professional, for the Cochrane, one to provoke the ME community. Working medical professionals are advised not to have personal social media profiles but he seems to revel in the the attention, like a small boy….quite unbecoming but I doubt he cares, he has some new friends…

 

Indeed, although it may be more shooting themselves somewhere even more uncomfortable.

I already have a paragraph or two on this; I could easily add few more names.

Perhaps we should ask for an official Cochrane view of the NICE guidelines. Do they support the constant Garner and Mrs Floptop or not? Or has Cochrane self-destructed now? If it hasn't `I think someone may have lit the blue touch paper already.

 

Interesting thought.

But of course they would not need to worry. A bit of CBT, a sprinkling of GET, and a dash of LP - all will be better again; they know all about this stuff.

 

It's way worse than no excuses. He has absolutely no right to occupy these influential positions of responsibility that he does. Surely there must be codes of conduct, possibly contractually binding, that go with people in these positions; he must be violating so much in this regard.

 

Code:

https://twitter.com/AlanCarson15/status/1466461909855703043

It seems @Brian Hughes' Twitter thread needs to be shared more widely.

Code:

https://twitter.com/b_m_hughes/status/1466079439503167492

 

I wonder who---?

 

Prof Garner tweets “Nice Guideline for CFS/ME derived from activism, not research-from a recovered patient. I have never seen such a corruption of the evidence-informed guideline process.” Though what follows is my attempt at teaching my grandmother to suck eggs, I think it is worth repeating some very basic points about scientific methodology.

Though in medicine single case studies may form a basis for developing research proposals, in themselves they are never conclusive evidence for a generalisable theory. That indeed would be the textbook logical fallacy of ‘going from the specific to the general’. No rational experimentalist or even first year philosophy undergraduate would support this approach. This is on a par with saying ‘My friend has red hair and speaks Basque, therefor all people with red hair speak Basque’.

Yet here Prof Garner is not even arguing from published documented single case studies as a basis of justifying the Lightning Process, but rather personal testimony. Historically we see the use of personal testimony by religious cults and snake oil salesmen. How can we take seriously someone who places the tactics of a snake oil salesman above objective analysis of the experimental evidence by a group independent scientists.

Prof Garner implies the conclusions of the independent evidence review was driven by activism, which the cited Norwegian opinion piece attributes to an imbalance of lay members on the committee. However, as already pointed out here these patients/patient advocates formed a minority, one in four of the ME/CFS NICE guidelines committee, and the evidence review was undertaken independently to the committee itself. Yet Prof Garner, seems to believe that this minority somehow overruled the separate panel of independent experts that undertook the extensive evidence review and the much larger number of academics and clinicians on the guidelines committee, in relation to the Lightening Process.

I am mightily impressed that these five individuals managed to influence (presumably telepathically) the independent group of experts, who they never met face to face, that undertook the evidence review, and to also over rule the senior academics and clinicians that made up three quarters of the committee.

Presumably Prof Garner is following on from the beliefs of Phil Parker, the creator and owner of the Lightening Process, who has made use of telepathy as part of his previous faith healing and advocates that your personal beliefs if strong enough can change external reality.

 

Yet he referred to the 2007 NICE guidance as "ghastly" a year ago:

https://twitter.com/user/status/1309180353882599430

 

One of the responses

https://twitter.com/user/status/1466466878650564612

 

The problem with PG and his ilk, is that their propaganda strategies tend to follow the adage: If you throw enough sh1t against a wall, then some of it always sticks.

 

Maybe time for a cup of tea ... PG Tips?

 

Now that the guidelines have been changed…….
which is so awesome

and I am so grateful for all those people who have done all those wonderfully amazingly effective things.

I really am no good at expressing how grateful I am .
Therefore asking my next question feels somewhat dismissive and ungrateful. That’s not actually what I mean though. I’m just not capable of doing what these heroes have actually done.

The more I read this, the worse I feel and the bigger hole I seem to be digging.

maybe I should just delete all this waffle from me…….
Somebody else might wonder the same?

Is there a thread about how we all might help get the GPs and/or CCGs to get updated?

 

Action for ME have a draft letter on the update for people to send to their GPs: https://www.actionforme.org.uk/rese...mpaigning-for-change/join-our-act4me-network/

MEAction UK have emailed a template letter to supporters.

Files attached. Charities and Forward ME are working to get info to CCGs etc, also nurses for ME and Physios for ME.

 

Very useful thanks!

 

To be fair, I think they sat at the same table or at least videoconference.

 

Yes, there were techies at the committee meetings when they had to present evidence reviews.