Forward ME Group minutes 1st May 2018

http://www.forward-me.org.uk/1st May 2018.htm


Long agenda with some interesting topics:

1. Carol Monaghan becomes deputy Chair
2. Afme's new advocacy member based in Geneva is introduced
3. An ME patient, Mrs Nina Muirhead was introduced by CS. She is a doctor, a surgeon, did not cover ME in her training but has many useful contacts in medical training and the media
4. Diane O'Leary has had a paper accepted on ME and the Nice guideline in the Journal of Medical Ethics
5. IAPT, BSS etc discussed
6. C of M is to complain to Charity Commission about SMC denigrating ME and ME charities

Lots happening.

ETA: punctuation

 

Thanks, @Binkie4 - I agree that there's lots of interesting stuff.

An interesting new person:

 

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:

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.

 

Dr Nina muirhead can be seen on a video on AFMEs page where she attended their Geneva thing and gave a talk.

I'm all for medics getting on board as long as they're aware of the history /politics of the illness, The fact many have poorer treatment and outcomes than their own etc. This lady does seem keen and professional with some insights into the deficits in the NHS so might be an asset with a remarkably few number of outspoken Drs on our side. Her video called for large epidemiological studies to see why some recovered and some died, her words, I think we know enough about management and diagnosis as crucial factors on often determining outcomes and urgently need biomedical research to help, especially the severe. MS has had fatigue as a recognised huge issue for years, not necessarily directly related to lesions and they still seem without treatment or much understanding so I'm not sure if we are right to think with investment follows answers but I'm very much for research vs the better management approach, as there's so many generations of wounded for whom just better pacing support etc isn't going to be particularly helpful now.

The charities have been supposed to be looking into the state of medical education on this for years. In terms of a campaigning and a moving forward organisation I do have more faith in #MEAction

 

The minutes also include mention of concern that those in the NHS are promoting the Lightning Process.

I've got some concern that the Action for ME International Advocacy efforts could be a bit blundering. So far we've not seen anyone from the charity who seems to really know what they're talking about (eg PACE), they have a history of making things worse by trying to chum up to authority figures, and there's been a lack of details about their approach to the WHO and what exactly they're trying to achieve.

 

Well, @Dx is retiring in September, so you will all need to keep a very close eye on future developments with ICD-11, SNOMED CT and its National Editions, ICPC-2, the revision of ICPC-2 for ICPC-3 etc.

 

From someone with a somewhat tangential thought process, your reports and advocacy have been much appreciated - all the more so for the clarity in explaining complex issues.

I hope that retirement brings some relaxation (!).

From someone new to this much misunderstood illness, thank you for all your hard work and endless patience

 

I was really pleased to read this in the report following our ‘small group trip’ to see Alex Chalk 20.4.2018.

May be wrong but David Drew Lab, Stroud supported the Gloucester Millions Missing and might be the ‘Labour MP’

“5.3 Carol Monaghan MP announced she would have to leave the meeting soon because of other engagements but before leaving she would outline relevant activity now taking place in the House of Commons. She had had meetings with other MPs (including Nicky Morgan MP and Alex Chalk MP) about ME/CFS. She had been contacted by a Labour MP as well“

 

So amazing that you have given us years of detailed history Suzy. Thank so much.

 

Judging by those minutes it is not surprising that nothing much useful ever seems to happen. I don't think I have ever seen minutes which record that questions need to be asked, without specifying of whom they need to be asked, who will be responsible for asking them, and whether they will be able to report any response to the next meeting. It gives the impression of a talking shop hoping to extend its jurisdiction to Geneva.

Oh, and something must be done.

One can almost see the battle lines emerging. "Several members proposed that Forward ME should be the UK member of the alliance rather than just AFME. This was agreed." So how does that work? Does the UK have two representatives? Presumably not. Have Afme agreed to step aside? If so what is the relationship between Forward ME and Afme's international representative? What are the cost implications of being a member of an international organisation? Is money raised for charitable purposes to be used? Just what sort of an organisation is Forward-ME. I could go on, but had better not.

I will just ask the following of @Russell Fleming and @Action for M.E. as you have the good grace to appear here and answer questions.

Given the statement at 3.8 of the minutes that "Diane O 'Leary had been very useful in alerting us to the work done in the WHO to transfer ME/CFS from a specific disease to musculoskeletal signs and symptoms" do you concur with the related statement in the "personal" letter to Ms Chapman by Mar, Chairman, Forward-ME, and appearing on the organisation's website, that "Had it not been for Diane O'Leary's research I believe that it is very unlikely that we would have known about the proposals until it was too late".

Presumably statements made on the website have the apparent authority of member organisations which must be seen as condoning the contents. I think members of this forum would be surprised to learn that the leading UK charities were unaware of these developments, until alerted to them by Diane O'Leary, given the attempts by Suzy Chapman over the years to inform people,(Edit typo) both here and elsewhere.

The publication of that personal letter, edited to remove the template with the warnings against disclosure, makes your organisations appear petty, vindictive and demeaning. What further inferences may be drawn will depend on your response. Of course it may be that you have no control over the contents of the website, in which case you may wish to disassociate your organisations from the contents of that letter and its publication.

 

With regard to the proposals of the Primary Care Consultation Group (PCCG) for Bodily stress syndrome (BSS):

I have been reporting on developments with the PCCG working group since 2012 on my website and on a number of other platforms, along with developments with BDD and BDS - so the statement in the Countess of Mar's letter of May 7 that "with the exception of the cognoscenti, this knowledge [about BSS, BDD and BSD] hasn’t, until very recently, come into the public domain" is a curious statement.


I had advised the Countess of Mar and Sonya Chowdhury about the Primary Care Consultation Group (PCCG) in October 2017.

On October 8, I had drafted a letter for the Countess of Mar to review prior to sending to SNOMED International's terminology leads, as a follow up to an earlier communication, in September, which had been reviewed by the Forward-ME org reps.

A couple of days later: Suzy Chapman to Countess of Mar, CC Sonya Chowdhury, by email, October 10, 2017:

"...I think it might be a good idea at some point to send a copy of the letter [of October 8] to Dr Case to Dr Geoffrey Reed, as he is Project Manager for the Mental and behavioural chapter and also a co-chair of the Goldberg Primary Care group that has been recommending "BSS" for the abridged primary care version (ICD-11 PHC).

"I have included some information about "BSS" in the letter for Dr Case (which I have expanded on in the version attached, as I wanted to make the point that there could be three very similar names in use and that if BSS were used in the primary care version, there will be a lack of correspondence between the core ICD-11 and the abridged ICD-11 PHC). (Margaret, I hope you did not mind my adding in an extra para to the letter to expand on BSS?)

"I've also attached a PDF of a Marianne Rosendal presentation on BSS which I found only yesterday. She is a member of the Goldberg primary care group. She has published with Fink, sits on EU primary care classification revision committees etc. It looks as though decisions about whether to go forward with BSS for the ICD-11 PHC primary care version will likely be made this year. BSS is the Goldberg group's adaptation of Fink's BDS and there would appear to be no exclusions for CFS, IBS and FM.

"I don't think the ICD-10 PHC is used for coding in this country and was never a successful publication elsewhere in the world. There are several other primary care classification systems, like ICPC-2, http://www.who.int/classifications/icd/adaptations/icpc2/en/ that the WHO also has involvement with. ICPC-2 is also under revision and Mike Klinkman and Rosendal are both involved in that. Klinkman is also a co-chair, with Reed, of the Goldberg group. Rosendal has already got BDS into the Danish extension of one of the EU primary care coding systems..."​

A copy of the Marianne Rosendal presentation was resent to the Countess of Mar and Sonya Chowdhury on March 12, 2018.

So yes, it is the case that the Countess of Mar and Sonya Chowdhury were both aware of the ICD-11 PHC "Primary care" publication, the external PCCG working group, their BSS proposals and the Rosendal presentation back in October, last year; and reference to the PCCG's BSS proposals had been included in Forward-ME's letters to SNOMED International, back in October.

And as previously noted, I had informed them of Dr Dua's proposal of November 6, 2017, the day after it had been submitted, included a copy of the proposal, provided background on Dr Dua's role within WHO and the former roles she held within the now sunsetted Topic Advisory Group for Neurology, and drafted communications for Dr Dua, Dr Saxena and Dr Grove between November and March, this year. I had also provided a copy of the response and analysis to the Dua proposal prepared by Mary Dimmock and me and posted on February 15 (available in PDF format at: http://bit.ly/2o8Gfbs).

So Foward-ME's knowledge of the Dr Dua proposal dates from November 7.

 

That personal letter to me, as published on the Forward-ME Letters page, on May 9, has not only been edited to remove the Parliamentary warnings against disclosure: it bears no date and the list of recipients who had been copied into that letter (22 individuals, including Carol Monaghan MP, Dr Nigel Speight, Dr William Weir and Dr Nina Muirhead) has not been included; but the letter has also been edited.

Several passages have been removed, ie it has not been "published in full" as I was informed on May 9. Here are both letters, in full, as they were sent to me (and in the case of the letter of May 7, to 22 others):

-----------------------------------------------

Subject: Forward-ME
Date: Monday, 7 May 2018
From: MAR, Countess of

To: suzychapman

Email was CCd to the following (I have redacted email addresses as a matter of courtesy to the recipients)

CC: Diane O'Leary; Anita Williams; Carol Monaghan; Cath Ross; Dr Charles Shepherd; Christine Harrison; Clare Ogden; Gareth Tuckwell; Hannah Clifton; Helen Brownlie; Jane Colby; Janice Kent; Jonathan [ME Research UK]; Katie Mc Mahon; Dr Nina Muirhead; Paul Worthley; Phillida Bunkle; Sarah Reed; Dr Nigel Speight; Sue Waddle; Tony Crouch; Dr William Weir


Dear Ms Chapman

Thank you for all the documents that you have been sending me indicating that you have been warning about BDD BDS and BSS for many years. It is sad that, with the exception of the cognoscenti, this knowledge hasn’t, until very recently, come into the public domain. Whilst I readily acknowledge, as I have done on the Forward-ME website, the excellent scholarly work that you have done on the subject, I find it very hard to accept that you are giving the impression that you have a monopoly of knowledge of these classifications as you seem to infer both in the material that you have sent to me and in that appearing on the Science4ME website. Neither do you have a monopoly or a veto on the advice that is given to Forward-ME. I did not comment at the time, but at no time did I give you authority to tell ME Research UK to remove a paper from their website, which they did on an instruction that you purported had come from me.

Had it not been for Diane O’Leary’s research, I believe that it is very unlikely that we would have known about the proposals until it was too late. You cast aspersions on Diane’s right to write about ME and the ICD; you cast aspersions on her integrity and knowledge of the subject; you infer that she is using Forward-ME to promote her own interests, and you have quoted what she has written about BSS out of context. When Diane states that “…. in the interests of ME patients to encourage the WHO to adopt just the basic criteria as they are currently in place”, you fail to acknowledge that in the third paragraph of the Info Sheet she states “The basic form of BSS changes very little from the current diagnostic construct, but the WHO plans to recommend some additional criteria which will make it extremely difficult for ME patients around the world to get medical care and support.”

I know that you are totally against any of these constructs being applied to ME patients at all but, as Diane explains, and as we already know from the introduction of IAPT in the UK, until we get a lot more biomedical evidence for ME, we are not going to be able to turn back the clock. I find it unreasonable that you should find cause to deny what is already happening in your insistence that you, and only you, are right in your approach to WHO over the classification of ME. There should be room for views of all sorts to be discussed and, from those discussions, a consensus arrived at. By attempting to close down discussion on the ethics of diagnosis and treatment of patients with ME by questioning the validity of ethics in medicine I believe you are doing the “cause” a disservice.

I have spent many years trying to heal the divisions that have made it easy for those who have the authority to make progress to ignore the pleas of ME patients and their carers for recognition, diagnosis, treatment and social care. It is only by presenting a united front that any progress can be made. This applies at local, national and international levels and I am going to continue to do my very best to ensure that the message doesn’t get lost in the chatter.

Your ability to dissect the complexities of the WHO ICD classifications are rightly well respected. I have tried to promote your interests with the WHO by allowing you to use Forward-ME and my name as a vehicle for your correspondence. I regret that, in future, this facility will no longer be available to you.

Yours sincerely

Mar

Chairman, Forward-ME

UK Parliament Disclaimer: This e-mail is confidential to the intended recipient. If you have received it in error, please notify the sender and delete it from your system. Any unauthorised use, disclosure, or copying is not permitted. This e-mail has been checked for viruses, but no liability is accepted for any damage caused by any virus transmitted by this e-mail. This e-mail address is not secure, is not encrypted and should not be used for sensitive data.

------------------

Subject: My email to you.
Date: Wednesday, 9 May 2018
From: MAR, Countess of

To: suzychapman

Dear Ms Chapman

I write to inform you that my email dated 13 April 2018 [sic] is now published in full on the Forward-ME website so that people may come to their own conclusions. I do need to make clear to you:

• I never employed you as an adviser to Forward-ME or to provide what you call an ‘external service’, so I cannot have fired you.*

• My email to you was personal but, as I always do where Forward-ME is concerned (and you had chosen to include the Group), I kept them informed.

• As the Group had never discussed your being adviser to Forward-ME, there was no requirement that I discuss dispensing with your services.

• What I have done is to tell you that my services are no longer available to you in your communications with the WHO.

• My decision was most definitely not political.

You have my permission to publish the whole of this communication.

I will reiterate that, in this forthcoming ME Awareness Week, my sole purpose is to serve the ME community and this is not the time for fomenting dissent. It is simply not kind to ME sufferers.

Yours sincerely

Mar


UK Parliament Disclaimer: This e-mail is confidential to the intended recipient. If you have received it in error, please notify the sender and delete it from your system. Any unauthorised use, disclosure, or copying is not permitted. This e-mail has been checked for viruses, but no liability is accepted for any damage caused by any virus transmitted by this e-mail. This e-mail address is not secure, is not encrypted and should not be used for sensitive data.

---------------------------------

*Note that I have not in any posts on any forums used the words "employed" or "fired" in relation to the issue of the termination of my collaboration with the Countess of Mar in relation to her engagement, on behalf of Forward-ME, with SNOMED International, NHS Digital, WHO and ICD Revision.

 

Extract, Minutes, Forward-ME meeting, May 01, 2018:

http://www.forward-me.org.uk/1st May 2018.htm

3.9 Dr Shepherd read from a letter of reply (See Note 1) 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. (See Note 2) Carol Monaghan MP offered to look into this too. This was agreed."



Note 1: Neither the letter sent to the RCGP on behalf of Forward-ME nor the response received from Dr J Leech (Hon Sec, RCGP) are available for scrutiny on the Forward-ME Letters page.


Note 2: Parliamentary Question tabled on 17 April 2018:

https://www.parliament.uk/business/...nts/written-question/Lords/2018-04-17/HL6990/

Q
Asked by The Countess of Mar
Asked on: 17 April 2018
Department of Health and Social Care
Mental Health Services

HL6990
To ask Her Majesty's Government whether they intend to replace the phrase "medically unexplained symptoms" in the Improving Access to Psychological Therapies programme guidance if the World Health Organization decides it will no longer use this term; and if so, what terminology will be used instead.


A
Answered by: Lord O'Shaughnessy
Answered on: 01 May 2018

NHS England advises that, should the World Health Organization replace the phrase “medically unexplained symptoms” with an alternative phrase, it would make an assessment at that time as to whether, when and how to implement any change.

Currently NHS England has not been made aware of any intended change to the current phrase by the World Health Organization.

--------------------------------


Note that it is unclear from this Parliamentary Question, as tabled, what the phrase "if the World Health Organization decides it will no longer use this term" actually means, ie, to which WHO policy statement, ICD classification system or ICD publication the Question is referring.

For the NHS, the WHO mandatory classification system is ICD-10.

There is no coded for entity "Medically unexplained symptoms" per se in ICD-10, which codes for the various F45.x Somatoform disorders (F45.0 - F45.9).

There is an F45 Unexplained somatic complaints in the 1996 publication: Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version. 1996 (aka "ICD-10-PHC"), which contains 25 "common mental disorders".

This WHO publication is not a mandatory publication for use in NHS primary care.

There are various terms in the (now deprecated) Read Code CTV-3 terminology system and in SNOMED CT (including a Concept SCTID: 887761000000101 Medically unexplained symptoms, which is exclusive to the SNOMED CT UK Extension) but that is not a WHO owned terminology system.


From the context of the minutes and the two references to "bodily stress syndrome" and "BSS", one assumes that the Parliamentary Question refers to proposals for the revision of the 1996 ICD-10-PHC "Primary Care" publication.


The PQ of 17 April 2018 had asked:

"To ask Her Majesty's Government whether they intend to replace the phrase "medically unexplained symptoms" in the Improving Access to Psychological Therapies programme guidance if the World Health Organization decides it will no longer use this term; and if so, what terminology will be used instead."

With 10 member org reps, a Vice chair and three "Associates" as stakeholders in Forward-ME, I am concerned that evidently none of these had queried the vagueness of the proposed wording of the PQ and its lack of context before it was tabled on April 17 or considered the implications for its vagueness on the response received.

 

This is worrying - how can a term be replaced if it does not exist in the first place? This is pretty basic and does not inspire confidence.
At a time when everyone should be singing from the same songsheet it would appear that the song is still being composed.
@Action for M.E. - can you address this - it's a pretty big own goal.

 

Furthermore, the draft minutes would have been circulated amongst the org reps. Did none of them query the lack of clarity before they signed off on the minutes?

Especially given the minutes don't annex a copy of the letter as sent to the RCGP or a copy of the response received and these letters have not been uploaded to the Forward-ME letters page.

 

There is a fundamental problem in that minutes may be both true and untrue. They may be true in that they record accurately the business conducted at the meeting. They may be untrue in that what was said at the meeting was inaccurate, or at least inadequate.

It is a great relief to know that Forward-ME must have available to it the services of someone of greater expertise and attention to detail on these matters.

 

Since early 2017, Forward-ME has become involved in the following areas of coding, classification and terminologies:

ICD-11 (Parliamentary Questions requesting clarification re the status of proposals for the G93.3 legacy terms for ICD-11)
ICD-11 (Preparation of response in support of Chapman & Dimmock proposal for the G93.3 legacy terms submitted on March 27, 2017)
SNOMED CT (Request for clarifications and changes to the listing of BDD)
SNOMED CT (Request for change of Parent for CFS)
ICD-11 (Further requests for clarifications re the status of proposals for the G93.3 legacy terms and for clarifications around the proposal for ICD-11 submitted by Dr Tarun Dua, November 6, 2017)

Since March 2018:

WHO/ICD Revision (proposals for the revision of the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version. 1996, aka "ICD-10-PHC")

As someone who is no longer working in collaboration with the Countess of Mar, on behalf of Forward-ME, and since I shall, in any case, be retiring from advocacy work in August/September, my advice would be if there is anything in the minutes of Forward-ME meetings around coding, classification and terminologies that is less than clear, that the Chair, Vice chair or the orgs that have signed off on the minutes are approached to provide clarity.

 

@Russell Fleming @Action for M.E.

I am not pressing you yet to reply to my earlier question. I realise that a position on the horns of a dilemma is not a comfortable one.

The above posts have raised another matter which requires the attention of your organisations as members of Forward-ME and, as such, apparently having some responsibility, if not power, in respect of the contents of its website. It seems appropriate to raise the matter on this thread as it concerns the letter referred to in matters arising out of the minutes.

It now appears that the personal e-mail, posted on the website, to Suzy Chapman sent by Mar in the stated capacity of chairman of Forward-ME was edited for content, as well as removal of the template. There is no explanation of the reasons for publication, nor any indication of editing. Although removal of the template, with its warning against publication of contents, completely alters the context of the publication of the document, one can, with some difficulty see how it might occur. There can be no such understanding in respect of editing of content before posting, in such a way as to alter the views which people might form of the e-mail.

More in sorrow than in anger it must be said that this raises fundamental questions of trust and the issues need to be addressed and dealt with by the membership of Forward-ME.

You will see the difficulties that this development poses when placed in juxtaposition to the suggestion in the minutes that only the intervention of Diane O'Leary alerted Forward-ME to developments with the WHO.