ME Association - Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes - 21 April 2018

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Eagles

Senior Member (Voting Rights)
ME Association - Forward ME – Meeting with Dr Diane O’Leary about possible WHO coding changes - 21 April 2018

http://www.meassociation.org.uk/201...ut-possible-who-coding-changes-21-april-2018/

Forward ME

Notes of meeting held on Wednesday 28 March 2018

1. Apologies

Hannah Clifton ME Trust, Dr Paul Worthley ME Trust, Dr Gareth Tuckwell ME Trust, Bill and Janice Kent ReMEmber, Cath Ross 25% ME Group, Tony Crouch 25% ME Group, Christine and Tanya Harrison BRAME.

2. Present

Carol Monaghan MP, Dr William Weir, Dr Charles Shepherd ME Association, Jane Colby Tymes Trust, Sarah Reed #MEAction, Clare Ogden Action for ME, Countess of Mar (Chairman).

3. Science Media Centre

There was discussion about the Science Media Centre Factsheet “CFS/ME – The illness and the controversy” which was published on the SMC website on 20 March 2018. It was agreed that the Chairman would write to the Chief Executive and to the Chair of the trustees of the SMC to object to the inaccuracies and distortions and to request that the factsheet be retracted.

4. Dr Diane O’Leary

Dr O’Leary presented a paper on the move within the WHO International Classification of Disease team working on the ICD11 revision to reclassify a number of disorders previously grouped as MUS (medically unexplained symptoms) into one large symptom cluster with criteria that would be used in primary care and which would ensure that all patients who qualified would be offered mental health care rather than medical care. None of these criteria were evidence-based.

(See “Bodily Stress Syndrome” info sheet).

The group discussed Dr O’Leary’s concerns and various actions were suggested. These included:

Publication of the info sheet on Forward-ME website with members either linking to it or publishing it themselves. It was agreed that this would not be done until after 12 April 2018 as there were to be discussions with the WHO.

(N.B. Subsequently, it was decided between the Chairman and Dr O’Leary to publish the info sheet as it was important that the information be disseminated as soon as possible).

The Royal Colleges of Physicians and of General practitioners might not be aware of the effects that this reclassification would have on their members’ diagnosis of patients’ symptoms so the Chairman agreed to write to them.

Other organisations representing people with MUS should be alerted so that, if they wish, they can make representations to the WHO. The Chairman would find as many of them as possible.

It was agreed that there should be another meeting soon so that further activities could be organised.

Note: A further communication about the possible changes to WHO coding has subsequently been placed on the Forward ME website dated 9 April 2018.

5. Any other business

Christine Harrison reported to the Chairmen that she was in regular contact with staff from Capita and that they were working on a new training programme for health professionals.

Charles Shepherd said that he was doing the same with Maximus.

Bill and Janice Kent asked that they be involved in any action that was to be taken with regard to BSS.

6. Date of next meeting

The next meeting would be held at 2.00 pm on Tuesday 1 May 2018.
 
There is already a thread on the issue of Diane O'Leary's "briefing documents".

(She put out one published on 3 April and then a revised version that omitted some of the dubious statements made in the initial version).

Between version #1 and version #2, the Countess of Mar posted a statement on the Forward-ME website, which still gives a platform for the initial version - but not for the second version.

I am both disappointed and disturbed to note that the ME Association has linked to the initial version.


The initial version contains the following opinions held by Dr O'Leary:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

and

"What Can We Do About It?
It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC*. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so. This is the goal."


Caveat emptor.


These statements do not sit well with Forward-ME, AfME and the MEA's support in 2017 for the proposals submitted by me, and jointly with Mary Dimmock, for addition of exclusions for the G93.3 legacy terms under ICD-11's Bodily distress disorder.


However, the revised version is also problematic.

Suzy Chapman

Dx Revision Watch
 
From the MEA's website write up of the Forward-ME meeting:

  • The Royal Colleges of Physicians and of General practitioners might not be aware of the effects that this reclassification would have on their members’ diagnosis of patients’ symptoms so the Chairman agreed to write to them.
  • Other organisations representing people with MUS should be alerted so that, if they wish, they can make representations to the WHO. The Chairman would find as many of them as possible.


What isn't mentioned in any of the documents issued by O'Leary or by the Countess of Mar is the fact that the task of making recommendations for the revision of the:

World Health Organization. (‎1996)‎. Diagnostic and management guidelines for mental disorders in primary care: ICD-10. Chapter 5, Primary care version

has been the purview of the Primary Care Consultation Group (PCCG).

Made up of half psychiatrists, half general practitioners, this 12 member external working group is chaired by Prof, Sir David Goldberg - who is now 84. (He still uses archaic terms like "effort syndrome" for which there is no ICD-10 code.)

Prof Goldberg had overseen the development of the 1996 publication.

Some of the WHO field trials for testing the proposed "Bodily stress syndrome" diagnostic category were part funded by the Institute of Psychiatry - Prof Goldberg's former employers.
 
You gotta hand it to these guys, they know how to play the political game superbly. They understand the real power lies in being able to influence ICD definitions and government policy.

If only they played the scientific and ethical games that well too, imagine how far we could have come in the last 30 years.
 
Yep, it is a game of 10 steps forward, 9 steps back. Don't see much prospect of that changing any time soon, unless and until we get a solid biomarker. Even then they will try to spin it. They ain't giving up their privileged positions without a serious and dirty fight. As they have made abundantly clear in the post-PACE era.
 
It would be interesting to know from whom Forward ME are taking advice, or proposing to take advice, on the complex issues of coding, now that they have dispensed with the services of their generally acknowledged expert. Do they have a plan?
 
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