Forward Me Group Minutes - 31st October 2017

Link to minutes of meeting with Professor Mark Baker, Director of Guidelines, NICE

http://www.forward-me.org.uk/31st October2017.htm

 

That looks very encouraging, let's hope that we see the progress that we need. Shame that Mark Baker is retiring before the process completes.

 

From the minutes

 

A little further down -

2.17 Prof Malcolm Hooper drew Prof Baker’s attention to his paper on ME. Prof Baker said he had received it. Prof Hooper said that the paper did not include a recent proposal to designate ME a somatic disorder. That needed to be stopped. Prof Baker commented that ME/CFS may need to be in a category of its own – not somatic or psychiatric.


I looked but I couldn't find a frightened emoji.

 

I don't see any comments from the Royal College of General Practitioners in the stakeholder comments.

This is not true. The royal College of Psychiatrists agreed with the proposal not to update the guideline ("Yes"), and said:

The Royal College of Physicians endorsed the statement by the Royal College of Psychiatrists.

This is completely unacceptable, as the Royal College of Physicians has shown itself to be highly biased in favor of a psychosomatic view of ME/CFS.

This was their response regarding an update to the guidelines:

This was the response of the Association of British Neurologists to which they refer regarding an update:

This was the response of the Royal College of Psychiatrists to which they refer regarding an update:

Reality doesn't seem to support what Mark Baker is saying. Or am I missing something?

 

Mark Baker and NICE can go screw themselves if they think patients will continue to tolerate ME/CFS denialism, expressed by placing us in our own special psychosomatic/delusional category

 

@Valentijn I’m afraid there are some comments from the Royal College of General Practitioners in the stakeholders consultation - bottom of page 89 down as RCGP.

They answered ‘No’ to the question ‘Do you agree with the proposal not to update the guideline?’

A taster of their reasons -

“The guideline could be improved for primary care with more focus on the mental health aspects, which are hardly mentioned. The model is very bio-medical and should be amended to give more weight to the psychological and social elements.”

 

I find it so hard to judge comments from UK Establishment figures, who can be pretty good at implying more than they say, and doing so in a way which is tailored to their audience.

Could be worth looking at how the back pain guidelines were revised? There's a lot of quackery around back pain too.

Oh... this is from last month on the changes to NICE guidelines:

https://www.sciencedaily.com/releases/2017/11/171115091753.htm

PS: I think that much depends on how cautious they are in any recommendations, and their commitment to informed consent. Previously, it did seem that there was too great a promotion of pain killers, considering the available evidence, but if they've just replaced that with 'treatments' that only appear to be more effective than placebo because trial's cannot be properly blinded, that's a very worrying sign.

Either there's an error in the minutes, or Hooper misused 'somatic' there, which means bodily/physical. Baker's response doesn't sound great.

Overall, those minutes leave me feeling less hopeful about things.

 

I'm always hopeful, but I do feel that the battle has only just begun. And to quote a film franchise

"I have a very bad feeling about this"

It will be interesting to see output from January's meeting to get a flavour of what we are up against.

Even if they alter the guideline eventually just to remove GET that will be a big step forward (excuse the pun). I hope they also write in clear wording that the disease has no relevance to a psychiatric disorder to help re-educate medical professionals. I doubt that will happen though.

There's no treatment yet, but putting something in there about comorbid conditions would be useful to help patients get treatment for those rather than be ignored.

Those are my 3 wish list items. I would like more but in the absence of any research into any viable treatment ...

 

Oh, I didn't search for that much of an abbreviation Full comment was:

• 
  

Whoever authored their comment for NICE was probably one or more of the authors whose name appears in all of the papers which they are promoting in their comment. Alison Wearden and Sarah Peters are not members of the RCGP, but Carolyn Chew-Graham and Christopher Dowrick are.​

 

This just looks like madness from Prof Baker. What's his evidence that ME/CFS is, of all diseases, neither of these things?

 

I think he wants them to remain bad, or to get worse. Otherwise he wouldn't be lying about the statements of the neurologists and the various Royal Colleges. The one example he listed of a changed guideline was one where the subject became substantially less biomedical and more psychosocial.

This part reeks of pandering to the audience (you'll be our special friends on the inside). I'm also concerned with the specification of "lay people" versus "patients," since lay people are supposed to lack specific knowledge about a given subject. I don't want a patient lay person at the table - I want a patient expert who understands the science and politics at the table:

 

In regard to the "not somatic or psychiatric" quote of Mark Bakers, I have sent this email to Forward ME.

 

I obviously can't know for certain but I would imagine that by "lay person" he means "a patient (or carer) and not part of the established medical profession in the UK". I was going to say he meant "a patient", and I think in his mind he probably does, but being part of the established medical profession in the UK doesn't prevent you from developing ME obviously.

 

Thanks, Andy. I think that's important.