Forward Me Group Minutes - 31st October 2017

[Moosie]

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

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

 

[Andy]

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.

 

[Andy]

From the minutes

1.Professor Mark Baker [Director of Guidelines, NICE]

1.1 Prof Baker gave a recap on the present Guideline on CFS/ME, saying that it had served some purpose but it had shortcomings which we had discussed at our meeting in 2014. It had therefore been agreed that the Guideline should be revised. He went on to say that when they consider guidelines for review they do so within the scope of the original guidelines. However, that did not mean that they had always got it right the first time, and, as he hoped he had made clear at our last meeting, he for one had never been comfortable with the Guideline on CFS/ME. To revise an existing NICE guideline was difficult but he had succeeded on two occasions, one being the Guideline on low back pain.

1.2 Professor Baker went on to say that out of 38 bodies who were consulted about the proposal for a review, 32 were in favour. 31 of those in favour were patient-representative bodies; the other was the Royal College of General Practitioners. As well as himself, the other senior Directors of NICE were persuaded of the need to change. He would be retiring within the next year but would pass on the work to his successors.

1.3 This meeting was one of a series they would be having with interested bodies as a prelude to work starting on the review of the Guideline. They had already met the Royal College of GPs, the Royal College of Physicians and the Royal College of Psychiatrists. There had been no opposition from these Colleges to updating the Guideline. The Royal College of Physicians will host the development of the Guideline.

1.4 Particular care would be taken with the make-up of the independent guideline committee and the scoping stages. Committees of this kind can have two or three patient/carer members and that would be particularly important with this committee. NICE were minded to include a lay person from the committee in the appointment of its Chair and they would probably look to Forward-ME to provide help with recruitment of lay people. Normally draft scoping is drawn up by technical experts; in this case they intended to hold a workshop first, probably in mid-January, and that would lead to the scoping exercise. The committee would probably meet for the first time in about September or October 2018 and publication would probably be some time in 2020

1.5 The content of the current Guideline had been decided by consensus and that would probably be the case with the revised Guideline, so it was essential to get the make-up of the committee right for the new guideline. Those formulating the Guideline would do so with an open mind and would be driven by evidence. NICE plans to give greater credence to patient views in the development of the guideline.

 

[Moosie]

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.

 

[Sasha]

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.

 

[Valentijn]

Professor Baker went on to say that out of 38 bodies who were consulted about the proposal for a review, 32 were in favour. 31 of those in favour were patient-representative bodies; the other was the Royal College of General Practitioners.

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

They had already met the Royal College of GPs, the Royal College of Physicians and the Royal College of Psychiatrists. There had been no opposition from these Colleges to updating the Guideline.

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

We support the view that the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) should not be updated.

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

The Royal College of Physicians will host the development of the Guideline.

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:

We would like to endorse the responses submitted by the Association of British Neurologists and Royal College of Psychiatrists

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

Neurologists in the UK are not usually involved with the diagnosis and management of CFS/ME but we do see many patients with this condition when it overlaps with other neurological presentations. The Association of British Neurologists also takes an interest in the disorder as one that is common, disabling and distressing and involves abnormal nervous system functioning.

It will be important at some stage to update the guideline to take into account data from several large trials including the PACE trial1 and the GETSET trial. These tend to strengthen the view expressed in the original guideline that Graded Exercise therapy and Cognitive Behavioural Therapy are moderately effective, and do help some people with CFS, including some that make a recovery.

In addition there are several papers which show that outcomes in routine clinical practice are similar to those seen in trials. The latter study shows that the outcomes are better in the Netherland than the UK. A very recent evaluation of specialist services across the UK was conducted, for example, of 440 patients at 1 year again showing that outcomes are similar to those seen in trials Such studies also reinforce the idea that recovery does occur in some patients even though in others it remains a chronic condition.

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

We support the view that the guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) should not be updated. The surveillance was brought forward to 2017 following a challenge based on potentially important new evidence. Evidence from a total of 155 reports was assessed by the surveillance team and topic experts. We found that the reporting of how the assessments were undertaken was rigorous and transparent; for example the controversy over PACE data was discussed and the PACE data was set aside when considering other evidence from RCTs and systematic reviews. The results of these other studies remained in-line with NICE guidelines on GET and CBT.

Graded Exercise Therapy (GET) is shown to reduce post-exertion fatigue more than control treatments (White et al 2011), and Graded Exercise Self-help (GES) is also shown to be a safe treatment that may reduce fatigue (Clark et al 2017).

Several recent papers show that outcomes in routine clinical practice are comparable to those seen in trials (Stahl et al 2013; Worm-Smeitink et al 2016). The latter study shows that the outcomes are better in the Netherland than the UK (Worm-Smeitink et al 2016). An evaluation of specialist services country wide following current NICE guidelines on assessment and treatment was conducted (Collin & Crawley 2017), showing significant benefit for around a third of patients a year after treatment.

On these grounds we can see no rationale for updating the current NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy).

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

 

[Valentijn]

Prof Baker commented that ME/CFS may need to be in a category of its own – not somatic or psychiatric.

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

 

[Adrian]

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.

I think that is why Baker's comments of the formation of the committee are particularly important. Sounds like he knows the guidelines are bad and they will remain bad if the committee is the same as before.

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

Given their previous chair's 'training videos' pushing GET and her husband then I think no comments from the Royal College of General Practitioner is a big improvement.

 

[Moosie]

@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.”

 

[Esther12]

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.

However, that did not mean that they had always got it right the first time, and, as he hoped he had made clear at our last meeting, he for one had never been comfortable with the Guideline on CFS/ME. To revise an existing NICE guideline was difficult but he had succeeded on two occasions, one being the Guideline on low back pain.

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:

If you visit your family doctor with low back pain (LBP), you may be surprised at the treatment options they suggest now. Recent changes to major international guidelines for the management of LBP mean that general practitioners (GP) are now unlikely to recommend pain medicines which were previously the go-to treatment. Instead of pain medicines, GPs might suggest non-medicinal approaches including yoga, mindfulness and various types of physiotherapy and psychological therapies.

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.

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.

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.

 

[arewenearlythereyet]

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 ...

 

[Valentijn]

@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.

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

• 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.
• The current guidance does not adequately guide the General Practitioner to consider several relatively common medical conditions which can masquerade as CFS/ME, each having chronic fatigue as a major component of their presentation. Patients suffer the double jeopardy of a generally low level of awareness of these conditions amongst the medical professions (1). If identified, each of these conditions has its own management approach, which will, understandably, differ from patients who in fact have CFS/ME. It remains important to explore and exclude other diagnoses before a diagnosis of CFS/ME is made.
• Primary care clinicians may have a difficult task in NOT increasing and commencing long-term medications of no proven value (especially of addiction) and having a high consultation rate for little therapeutic improvement.
• 1.2.2.3 The tests listed need to be updated with consideration of HgbA1c or fasting glucose.
• 1.6.3.1 Referral to a pain clinic in reality is likely to end up with gabapentin and narcotic
• prescription which are unlikely to help.
• 1.6.3.3 Melatonin. Suggesting referral as not licenced may not help, as the reality is someone will then advise the GP to prescribe it. The GMC expect GPs to carefully consider any treatment that they prescribe, and expect GPs to be able to justify their decisions and actions when prescribing, administering and managing medicines regardless of whether they are licensed or unlicensed.
• Since the publication of NICE guideline CG53 10 years ago, there has been further
• published evidence to consider, including two MRC-funded studies (FINE and PACE):
  • Chew-Graham C, Brooks J, Wearden A, Dowrick C, Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: A qualitative study. Primary Care Research and Development. October 2010. doi:10.1017/S146342361000037X
  • Wearden A, Dowrick C, Chew-Graham C, Bentall R, Morriss R, Peters S, Riste L, Richardson G, Lovell K, Dunn G. A randomised controlled trial of a nurse-led home-based self-help treatment for patients in primary care with chronic fatigue syndrome–the FINE Trial. BMJ 2010 340: c1777
  • Peters S, Wearden A, Morriss R, Dowrick C, Lovell K, Brooks J, Cahill G, Chew-Graham CA. Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of Chronic Fatigue Syndrome/Myalgic Encephalitis. BMC Imp Science 2011, 6:132.
  • Richardson G, Epstein D, Dowrick C, Chew-Graham C, Bentall RP, Morriss RK, Peters S, Riste L, Lovell K, Dunn G and Wearden AJ. An economic evaluation alongside a randomised controlled trial of a nurse-led home-based self-help treatment for patients in primary care with chronic fatigue syndrome. BMC Family Practice. 01/2013; 14(1):12. DOI:10.1186/1471-2296-14-12

• 
  

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.​

 

[Sasha]

Prof Baker commented that ME/CFS may need to be in a category of its own – not somatic or psychiatric.

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

 

[Valentijn]

I think that is why Baker's comments of the formation of the committee are particularly important. Sounds like he knows the guidelines are bad and they will remain bad if the committee is the same as before.

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:

NICE were minded to include a lay person from the committee in the appointment of its Chair and they would probably look to Forward-ME to provide help with recruitment of lay people.

 

[Andy]

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

I read with interest the minutes of this meeting and would like to double check something. In point 2.17, Prof Baker is quoted as saying "that ME/CFS may need to be in a category of its own – not somatic or psychiatric.”. Can you confirm that those were the words that he used, as this would seem to indicate that he considers ME/CFS to be of neither the body (somatic) or the mind (psychiatric) which would seem to put the condition outside of the remit of NICE and the NHS completely. If he did use these words, perhaps there is some context that is missing in order to make sense of this statement?

Appreciate any help you can give in clarifying this.

 

[Trish]

@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.”

This is seriously worrying. We cheer when we hear we are going to get new guidelines, only to find the GP's want it to go even more BPS...


I can't help wondering if it's all part of the project to throw all ill-understood conditions in the MUS dustbin with only poorly trained CBT practitioners or on-line 'therapy' available to us. All about money saving, and denying the reality of our illness so they can deny us proper medical care and disability benefits.

 

[Andy]

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:

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.

 

[Adrian]

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:

I've no idea what is in his mind. But the thing that seems really important is the way the review mechanism is set up and who is pulled onto the committee. This is what needs to be analysed/commented on and influenced. Then there is the evidence that gets looked at. My feeling is that there is very little to look at.

I wonder if the latest BMJ guidelines (which I haven't read) may be influential or could be used as such as well as the IoM report. My feeling is if they diverge from something like the IoM report then that is something to target.

Perhaps we should have some sort of shadow review?

 

[Sasha]

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

Thanks, Andy. I think that's important.

 

[Trish]

That's a very good e-mail @Andy. We have been stuck with the 'not a real illness' psychosomatic labelling for 30 years. It looks horribly like that's where he's heading again. It is good to try to pin this down.