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).
You can also read the minutes on the Forward ME website.
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.
You can also read the minutes on the Forward ME website.
Why the BDD proposal is very problematic for ME and CFS patients and why exclusions are essential:
Extracted from:
https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf
“In a 2013 BMJ commentary, Professor Allen Frances, who had chaired the Task Force for the drafting of DSM-IV, highlighted the particular vulnerabilities of some disease groups. Patients with chronic, multisystem diseases like chronic fatigue syndrome and myalgic encephalomyelitis, or who are awaiting a diagnosis, are considered to be particularly vulnerable to misapplication of a diagnosis of Somatic symptom disorder, or of receiving an additional “bolt-on” diagnosis of Somatic symptom disorder [8].”
“WHO has conducted no field trials specifically testing the safety, validity and reliability of the “Bodily distress disorder” definition and criteria, as defined for ICD-11, [an adaptation of SSD] in any patient populations.”
“With no body of evidence for the safety, validity, reliability, utility, prevalence and acceptability of the S3DWG’s proposed diagnostic construct, we are not persuaded that the S3DWG has incorporated adequate safeguards for this patient population.”
“Our recommendation remains that exclusions are required for the entities: Chronic fatigue syndrome; Benign myalgic encephalomyeltis; and Postviral fatigue syndrome to mitigate the risk of misdiagnosis with, or misapplication of an additional mental disorder diagnosis of Bodily distress disorder.”
“Ambiguity, confusion and conflation:
The authors have demonstrated elsewhere on the Beta platform [16] that the name which the S3DWG working group proposes to use for its single category replacement for most of the somatoform disorders has a history of usage in the literature and in the field interchangeably with that of the differently conceptualized, Fink et al. (2010) disorder construct.
“…There are other examples in the literature and in the field. But these suffice to demonstrate that the term, “Bodily distress disorder” is already used synonymously with the Fink et al (2010) disorder term “Bodily distress syndrome (BDS)”, that some researchers and clinicians, including Fink et al., themselves, do not distinguish between these two terms, and that as a result of the S3DWG’s perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs.
“Why did ICD Revision not identify this flaw, anticipate the potential for confusion and conflation and address this problem earlier in the development process?”
“Our recommendation is that exclusions are required for the entities: Chronic fatigue syndrome; Benign myalgic encephalomyeltis; and Postviral fatigue syndrome under Bodily distress disorder in ICD-11 to mitigate the risk of confusion and conflation with Bodily distress syndrome, a diagnostic construct intended to subsume these ICD entities.”
Am I missing something? Every time I hear of the WHO Classification of M.E. possibly being re-classified I wonder how on earth that can happen. When M.E. was placed under the neurological heading of diseases in 1969 there was less proof of the physicality of the illness than there is today. Worldwide research has demonstrated the organic nature of the illness, all the bodily systems involved – immune, neurological, cardiac, muscle, endocrine – that are implicated in the disease process and a reason for the symptoms being experienced. Just because there is no universal diagnostic test, no acceptable treatment and thus no cure doesn’t mean that the illness can or should be swept aside. If that is to be the case, then diseases such as MS, Lupus and various other illnesses should also be put in a dustbin of ‘medically unexplained symptoms’ for they are difficult to diagnose, difficult to treat and with no cure. M.E. is only ‘medically unexplained’ because science and research has not caught up yet but that is a poor reason to just cast aside the many findings in research that go some way to explaining this dreadful illness.
The MEA’s summary report of the Forward-ME meeting of 28 March contains the following links:
1 Two links to the Dr O’Leary “briefing document” entitled ““BODILY STRESS SYNDROME” INFO SHEET” (Document #1).
2 A link for a response by the Countess of Mar, dated 9 April.
An additional revised document was published several days ago on the website of ME Research UK entitled “*IMMEDIATE ACTION NEEDED*” (Document #2).
As a result, there is now considerable confusion as to whether Document #1 has been replaced by the revised Document #2 or whether both Documents are intended to be in the public domain.
On MEA’s Twitter feed, it is stated that “The potential changes to WHO coding for M.E. and CFS are complex. The ME Association hope to add some further clarity very soon.”
I am making available to the MEA background materials which will provide the MEA with accurate and up to date information on:
The status of decisions about PVFS, ME and CFS for ICD-11;
Changes to key ICD Revision personnel and to key committees;
The Timeline for release of the initial version of ICD-11 in June 2018;
SNOMED CT and CFS, ME;
SNOMED CT and BDD.
I hope the MEA will find this material of use when preparing any responses or other texts in relation to the revision of ICD-11, the forthcoming release of an initial version of ICD-11 and changes to SNOMED CT.
Should the MEA have any queries around the information that is being provided to them, please contact me and I shall be happy to provide clarifications.
On a general note:
The WHO plans to release an initial version of ICD-11 in June, this year. WHO plans to take the ICD-11 to the WHA assembly, in May 2018. But WHO will not be seeking endorsement of the ICD-11 until May 2019.
It is important to understand that the version released in June won’t have been completed:
. the scope of the ICD-11 MMS has been scaled back and not all chapters in this initial release may include “Description” texts for the terms included;
. there are over a 1000 proposals for addition of new terms or for edits to existing content that remain to be processed; many of these are too late for addition to the June release and will have to be reviewed for potential incorporation at a later date.
. external support is being recruited on a contract basis to assist in clearing the workload of preparing user guides and other editing tasks between June through to December, as there is insufficient WHO manpower and resources to complete the work;
. it is unclear now many of the user guidelines and companion publications, for example, the “Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders” publication that expands on the Mental, behavioural or neurodevelopmental disorders chapter of the core ICD-11 (similar to the current ICD-10 “Blue Book”) or how many of the other specialty stand alone publications that had originally been planned will have been completed by June 2018, and if not, when they will be completed or whether they may need to be delayed until the content of core ICD-11 edition has been endorsed by the WHA or until the ICD-11 codings are more stable.
The version of ICD-11 that will be published in 2018 is for testing, evaluation and implementation according to countries’ specific timelines and requirements.
There is no WHO mandated date by which member states will be required to migrate from ICD-10 to ICD-11.
Dr Christopher Chute has predicted it will likely take early implementers around 5 years to evaluate and prepare their countries’ health systems for transition to ICD-11. So no countries will be ready to move onto ICD-11 for several years. NHS Digital has yet to issue a tentative timeline for evaluation and potential migration to ICD-11.
ICD-10 and SNOMED CT are the mandatory classification and terminology systems for use in the NHS.
Jean, the current situation with the classification of the three G93.3 terms for ICD-11 is this:
In the Beta draft, the three ICD-10 legacy terms, PVFS, BME and CFS are located under Other diseases of the nervous system:
https://icd.who.int/dev11/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f569175314
A literature review is apparently still in progress. Once completed, we have been advised that any proposals to potentially relocate these terms under a different chapter or parent class will be passed to the new MSAC committee for their consideration.
If it is decided that the terms should be relocated (and when there is uncertainty, the WHO precedent is not to relocate) any new proposals for a potential change of chapter or parent class will be posted on the Beta Proposal Mechanism for public review and comment.
The WHO clarified several times in 2015 that there is no proposal and no intention to classify the terms in the ICD-11 core edition chapter for Mental disorders.
WHO’s Dr Robert Jakob also wrote to me earlier this year that there is no intention to “dump CFS in the Signs and symptoms chapter.”
WHO’s Dr Tarun Dua has submitted a proposal to relocate under Symptoms, signs, until a more appropriate chapter can be decided upon.
However, her proposal, and all decisions on proposals for these three terms are now on hold, while the scientific review is undertaken.
In March 2017, Mary Dimmock and I submitted a formal proposal and rationale for these three terms. If you have not already read a copy, you will find a summary here:
https://dxrevisionwatch.com/2017/04/03/a-proposal-for-the-icd-10-g93-3-legacy-terms-for-icd-11-part-two/
and the full proposal here:
https://dxrevisionwatch.files.wordpress.com/2017/03/icd-11-proposal-g93-3-suzy-chapman-mary-dimmock-final2.pdf
As you will have seen, we requested Exclusions under BDD for these three terms back in March 2017. We have also published an analysis of Dr Dua’s rationales for a proposed relocation under Symptoms, signs and why her proposal is flawed.
The external working group that has been making recommendations for the revision for the 27 mental disorder Primary Care publication is a different group to the external working group who have proposed the BDD disorder construct for the core edition.