Extract from Minutes, Forward-ME meeting, May 01, 2018:
3. Questions and discussion 3.1 The Chairman asked if Forward-ME could invite a member of the Alliance to come and speak to us. Alexandra Heumber confirmed that would be acceptable. Several members proposed Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed.
3.2 The Chairman agreed that we should discuss item 7 on the agenda (BSS, MUS and IAPT) at this point as it had international implications, and Alex would be unable to stay for the full meeting. The Chairman went on to say that in her view the NHS had acted prematurely by introducing IAPT for people with ME. Alex explained she was not familiar with the technicalities and would like to hear from more knowledgeable members of this meeting.
3.3 Clare Ogden referred to the e-mail she had sent out on this subject. She repeated her concerns about plans to reclassify ME/CFS as Medically Unexplained Symptoms (MUS). Last year the National Audit Office (NAO) had spent a lot of money conducting an investigation into Improving Access to Psychological Therapies (IAPT) – although that investigation had not been properly audited. The Chairman commented that she could ask a PQ about that investigation. Clare went on to explain that figures for recovery rates under IAPT were disputed. Some claimed they were as low as 10%, others as high as 50% . Dr Charles Shepherd commented that he knows someone very high up in the psychiatry specialism who says recovery rates are nowhere near as high as 50%. Clare had figures which showed that out of a million referrals, 85% do not complete the course. She added that there were three questions we needed to ask –
1. What is happening with ME patients under IAPT?
2. What have NAO found; their report is overdue? and
3. How will all this affect the NICE Guideline which is under review?
3.4 The Chairman commented that if we at Forward ME can work together with people from other countries and present an agreed narrative we can overcome many of the problems. Unity is strength. She also said she would write to Lord O’Shaughnessy on this matter and ask him to come and speak to us.
3.5 There was considerable discussion about claims that ME/CFS is a “mental health condition, and use of the term “functional disorder”. Carol Monaghan MP said she had written to Jeremy Hunt and NICE about this. Dr Charles Shepherd said that unfortunately most neurologists don’t want to deal with the management of ME patients. They don’t believe ME is a neurological disease. They love the term functional disorder and are inclined to refer ME patients to a psychiatrist interested in functional disorders.
3.6 Sue Waddle asked Alex what provision there might be in her project for dealing with claims that ME is a mental health condition. Alexandra replied that if WHO were to declare that ME is a physical disease that problem would be overcome. But to achieve that we would need the consensus of the international alliance.
3.7 Dr Charles Shepherd referred to ICD11 and asked Alex her advice on what we should be doing about it at Forward-ME and Parliament. Alex said that if we can get all parties – the international alliance, WHO, governments etc – to agree that ME is a physical disease (not mental), ICD will have to follow.
3.8 The Chairman commented that Diane O’Leary had been very useful in alerting us to the work that had been done in the WHO to transfer ME/CFS from a specific disease to musculoskeletal signs and symptoms. Diane had recently written to say the UK Journal of Medical Ethics had accepted her paper on ME and the NICE Guideline and had commented favourably.
The Chairman also mentioned she had written to the Royal College of Physicians, but they were not interested and suggested that she write to the Royal College of General Practitioners. In fact she had already done so and had received a favourable response.
At this point Alexandra Heumbert had to leave; the Chairman thanked her for her helpful information and for accepting Forward-ME into the alliance.
3.9 Dr Shepherd read from a letter of reply sent to the Chairman from Dr J Leech (Hon Sec, RCGP) about the proposal to re-classify ME/CFS under the heading of “medically unexplained symptoms” and use of the term “bodily stress syndrome” (BSS). In it he said that GPs should treat patients holistically. The RCGP had recently revised its training curriculum which had been submitted to the General Medical Council for approval. He also said that ICD classification is only one tool that can be used and is not overriding. Clare Ogden commented that they seemed to be saying that they don’t pay much heed to ICD. Other members agreed that most GPs probably knew nothing about ICD, but the Chairman warned that we should be concerned about the replacement of MUS with BSS. She had tabled a PQ on this subject. Carol Monaghan MP offered to look into this too. This was agreed."
[Extract ends]
Following developments in May between myself and the Countess of Mar, I don't intend to comment on the Minutes of the May 1 Forward-ME meeting, other than to place the following on record:
3.8 The Chairman commented that Diane O’Leary had been very useful in alerting us to the work that had been done in the WHO to transfer ME/CFS from a specific disease to musculoskeletal signs and symptoms.
The brevity of the Minutes might potentially result in some confusion around the above statement for readers who may not be familiar with the current status of ICD-11 proposals for the three ICD-10 terms, PVFS, BME and CFS.
The current status is as follows:
1 ICD-10 and ICD-11 do not use the conjoined term "ME/CFS".
2 ME/CFS [sic] has not been transferred to musculoskeletal signs and symptoms.
3 In March 2017, PVFS, BME and CFS were restored to the Beta draft under Parent block:
Other disorders of the nervous system.
4 In March 2017, WHO's Dr Robert Jakob clarified that
"chronic fatigue syndrome will not be lumped into the chapter 'signs and symptoms.'"
5 In April 2017, WHO clarified in a response to an Australian Senate Question:
"the final classification [of PVFS, BME and CFS] will be decided based on an extensive scientific review."
6 On November 6, 2017, WHO's Dr Tarun Dua submitted a proposal [1] via the Beta draft Proposal Mechanism that:
"ME/CFS [sic] be classified in the Signs and Symptoms Block of the ICD-11 as a child of Symptoms, signs or clinical findings of the musculoskeletal system... When there is sufficient evidence and understanding of the pathophysiological mechanisms, diagnostic biomarkers, and specific treatments, the syndrome can be appropriately classified within the proper block."
7 On November 7, 2017, Suzy Chapman informed the Countess of Mar and Sonya Chowdhury of Dr Dua's proposal and that specific questions had been raised with Dr Dua in relation to that proposal.
8 On January 29, 2018, "Team WHO" posted a comment under the Dr Dua proposal that
"Any decisions regarding this entity are on hold until the results of a review become available." Suzy Chapman informed the Countess of Mar and Sonya Chowdhury of the statement from "Team WHO".
9 On February 16, 2018, Suzy Chapman informed the Countess of Mar and Sonya Chowdhury that a joint response and analysis of the Dr Dua proposal had been submitted on February 15, by Suzy Chapman and Mary Dimmock.
10 Between November 2017 and March 2018, a number of exchanges took place between the Countess of Mar, on behalf of Forward-ME, and WHO's Dr Dua, Dr Saxena and Dr Grove in relation to the status of proposals for the G93.3 terms, in general, and this proposal from Dr Dua, in particular.
During the course of these exchanges Dr Grove had clarified the following:
That evidence is required for decisions towards allocating the relevant category in a better place in ICD-11 than the current one.
That a systematic review will determine if the category needs to be moved to any other specific chapter of ICD-11; that the outcomes will be posted together with the relevant detail on the proposal platform.
That the scientific review was expected to be completed by mid-April.
That the outcomes of the review will be provided for review by the Medical Scientific Advisory Committee (MSAC).
That the draft ICD-11 will be frozen for finalization in preparation of the release on 30 May 2018.
There has been no confirmation from Dr Grove as to whether a "scientific review"
was completed in April, and if so, whether any outcomes from the alleged review are now with the MSAC, for their consideration. But no new proposals from the MSAC have been submitted.
It remains unclear whether or at what point, ICD Revision might post new proposals on the Proposal Mechanism.
Whatever is in the Beta draft at the point at which the draft is frozen in preparation for release of an initial version, should go forward to the initial release in June 2018. As stated above, the terms are currently under
"Other disorders of the nervous system."
But at any point after the initial release, we might potentially find new proposals posted by WHO/MSAC on the Proposal Mechanism, which will become part of the annual maintenance and update programme that is the responsibility of the MSAC.
(TAG Neurology ceased operations in October 2016.)
ICD-11 precedence on relocation:
General considerations for potential chapter relocations were discussed at a meeting of the Joint Task Force, in July 2016 [2].
According to the meeting Summary Report (5.2 Key discussion), a general principle was reiterated that:
"...in the absence of compelling evidence mandating a change, legacy should trump with regard to the question of moving certain conditions to new chapters...JTF members confirmed that continuity over time is desirable. Where there is a rationale for change, the changes can be accommodated for, but there was a question about how to justify the effort required to make the changes in data reporting systems in the absence of compelling information indicating that the change makes things better or more accurate."
Also in ICD-11 Reference Guide Draft, 2017-10-09, Page 20-21:
"3.4 Guiding Principles: Allocation of entities in the classification follows a set of rules that serve to maintain the structural and functional integrity of the classification. The core set of rules listed here is complemented by additional rules that address special cases or serve to ensure consistent user guidance (see annex). They are listed in order of priority.
1. No changes to the classification, including movement of categories or groups between chapters, without rationale and documented change in aetiology or prevention method." [3].
I hope this clarifies the current status of the proposal submitted by Dr Dua, last November [1]; the status of the proposal submitted by me and Mary Dimmock, in March 2017 [4]; and the current status of proposals for PVFS, BME and CFS [5].
For an expanded update on the status of the G93.3 terms see my post:
Update on current status of proposals for ICD-11 for the ICD-10 G93.3 terms
1 Proposal, Dr Dua, November 6, 2017:
https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef
2 Fourth Meeting of the JLMMS Task Force, Queensland, Australia, 11-14 July 2016
http://www.who.int/entity/classific....07.11-14_iSummaryMeetingReportQueensland.pdf
3 Reference Guide Draft 2017-10-09, Page 20-21
https://icd.who.int/dev11/Downloads/Download?fileName=refguide.pdf
4 A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
https://dxrevisionwatch.com/2017/04...cd-10-g93-3-legacy-terms-for-icd-11-part-two/
5 Progression of PVFS, ME and CFS through the ICD-11 drafting platforms from May 2010 to May 2018
https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf
Edited for clarity.
