Forward ME Group minutes 1st May 2018

I also have a question for the reps of the Forward-ME membership organizations.

The Countess of Mar sent her initial letter terminating our collaboration on May 7, using the Parliamentary "no permission to disclose" footer.

On May 9, a second letter informed me, inter alia, that the initial letter "is now published in full on the Forward-ME website so that people may come to their own conclusions."

(It has already been noted that what has been published is not the version of the letter, as sent to me on May 7, but has been edited for content.)


My question for the reps of the Forward-ME membership organizations is this:

The first letter had been sent on May 7. By May 9, that communication had been published on the Forward-ME website, with no prior notification of intention to place a sensitive, personal communication in the public domain.

According to the minutes of the May 1 meeting, at some point in late March or April, a letter on behalf of Forward-ME was sent to the Royal College of General Practitioners (RCGP). The Chairman received a response from Dr J Leech (Hon Sec, RCGP) and Dr Shepherd is recorded as having read from that response.

That meeting was held 35 days ago.

Given the alacrity with which the communication dispensing with my services as an adviser on coding, classification and terminology systems was published on Forward-ME's website, why has no copy of the letter to the RCGP and the response received been published for public scrutiny and has any member of Forward-ME queried the absence of copies of these letters from the website's Letter page?

Thank you.

 

These minutes have left me confused as to the nature of Forward ME as an organisation. From its website one would assume that it is a normal, though perhaps poorly constituted, members organisation. It gives the appearance of conducting regular meetings for which minutes duly appear.

The problem as I see it is in respect of decision making and accountability, and whether the organisation is what it purports to be.

As an example I draw your attention to Minute 3.1 ".......Several members proposed that Forward-ME should be the UK member of the alliance rather than just AFME. This was agreed."

It would appear that this matter was not on the agenda, and there is no suggestion that any preliminary work had been done. The minuted terminology is imprecise and ambiguous. It is unclear whether the resolution was that Forward-ME should replace AFME as the UK representative on the alliance, or whether it was intended that the UK should have two representatives.

Having made such a decision any business-like organisation might reasonably be expected to hold further discussion as to the proposed implementation of this policy and appointment of a coordinator. One might expect a subcommittee to be requested to report back to the next meeting with an assessment of the implications of the decision, and how best to adopt and advance whatever the strategic aims might be. There was none of this....or anything else. discussion moved on briskly to the next topic.

The impression is given that the membership is happy to leave any detail to the sole discretion of the chairman.....and presumably her new advisor. The chairman is apparently unfamiliar with issues which have been under discussion for years and refers to them as being known to the "cognoscenti", which apparently does not include any of her member organisations-though they may have a different view of the matter.

What do the member organisations propose to do to ensure that as members of the alliance they are reliant upon best advice and subject to proper constraint and oversight. One might have hoped for better from those attending.

Has it, in the history of the organisation, been known for anyone to disagree, and continue to be invited to "membership"?

 

@Russell Fleming , @Action for M.E. - input would be a good idea . The recent turn of events does not inspire any confidence in the face of complex issues that have significant impacts for both pwme and other chronic illnesses

 

@NelliePledge There used to be an All Party Parliamentary Group on M.E. The APPG on M.E. disbanded when Parliament dissolved for the 2017 General Election and did not reform afterwards. The Group deregistered and there is no longer any APPG Group for M.E.

http://www.meassociation.org.uk/201...l-now-be-via-forward-me-group-22-august-2017/

"Following this year’s general election, none of the parliamentarians (with the exception of the Countess of Mar (pictured)), wanted to stand for re-election of the All-Party Parliamentary Group for M.E., and given the considerable challenges that it presents, neither the ME Association nor Action for M.E. are able to commit further time and resources to providing the joint Secretariat.

"These issues have been discussed at the most recent meeting of Forward-M.E. – and in conversations before and after – where it was decided that our collective time and resources could be better spent on engaging with MPs and peers individually, and also as a collaborative voice through Forward-ME..."


The Countess of Mar had held various offices on the APPG on M.E.'s committee, including the office of Vice-chair.

The APPG on M.E. was historically constituted to allow members of the public to attend its meetings, request items to be added to the agenda, raise questions or comment from the floor.

Some of the office holders were uncomfortable with members of the public attending APPG on M.E. meetings and it was decided to withdraw this facility from November 2010:

http://www.meassociation.org.uk/201...ty-parliamentary-group-on-me-9-november-2010/

"...The Chair, David Amess MP, has taken the decision that the meeting will closed to the public on this occasion and will be open only to parliamentarians and the secretariat. This will clearly be a great disappointment to those who have contributed to these meetings in the past..."


Forward-ME was set up by the Countess of Mar, as an invitation only group, which does not hold its meetings in public, in 2008:

Forward-ME Opening Statement

http://www.forward-me.org.uk/OpeningStatement.htm

Minutes of Initial Meeting 8 October 2008

http://www.forward-me.org.uk/8th October 2008.htm

 

I suspect that many are frustrated by the direction this thread has taken and consider it unhelpful. There are however important issues at stake. What exactly is the organisation Forward-ME which has resolved that it should be the UK representative in an international alliance?

I presume that everyone is familiar with the distinctions between a members' club, run by a committee of members appointed by election, and proprietary clubs, in which members may, or may not, have a limited say in day to day management, but overall control is at the sole discretion of the proprietor, whose decisions are final.

Probably most people have never had cause to consider the precise nature of Forward-ME, but it appears to be analogous to a proprietary club, although this may not be recognised by people dealing with it. One suspects that many members of the charities involved will consider their charities to be equal members of the organisation with some measure of democratic control. Recent events are showing the limitations of this view. It is beginning to appear that not only do the "members" have no say in important matters, but there is no effective process by which errors can be rectified. The offending letter is still on the website, displaying the error of judgment which informed us of the chairman's view of the state of her knowledge, and that of member organisations. It is possible that her statement was "faux naif"; but that has its dangers.

The problem seems to be that Forward-ME is an organisation whose ambitions have outgrown its constitution. Is there, in ME politics, place for an organisation in which members say "I agree with the chairman, otherwise I would not be here"? It is one thing to reach consensus through a synthesis of views. It is rather different to do so by simply excluding views one does not wish to hear.

The silence from charity representatives begins to make it look as though they have resolved that the Countess of Mar should be the UK representative. It might work. It might not. It might depend upon the advice she takes.

How many of you would agree with the statement:

"To ensure that patients receive optimal care for MUS, we must pursue not only psychiatric research but, more importantly, bioethical research, and our bioethical conclusions must be built upon foundations that are philosophically informed, and philosophically coherent"?

It sounds like an application for a job, (or for funding) but is found towards the end of Diane O'Leary's recent paper, as is:

"Future management of MUS will be dictated by the construct selected to replace somatoform disorders in the new edition of the global diagnostic coding manual ICD-11. Bioethical contributions to that decision making process would greatly improve the quality of patient care for generations to come."

It does not exactly go in for detail.It is surprising that there is no perceived need for biological research to try to resolve the uncertainty. We must pursue psychiatric research? Perhaps, but certainly not in the area of ME. Perhaps some people did not make it to the end of the paper.

 

@chrisb, I completely share your view, to be honest also about O'Leary's letter and paper. I think you put forward the problems in a clear manner.

 

I have deep reservations regarding both the route this is going and the wall of silence from charities involved. There is much at stake; this could entrench the BPS narrative for years to come.

 

Yes, it is beginning to look like a synchronised silence. Perhaps there is a belief that this a matter of interest only to the cognoscenti. How short some memories are.

 

It does not exactly go in for consistency, either:

"The primary care diagnosis of BSS will have far greater power in determining how ME patients are diagnosed and treated than any diagnosis listed in the general ICD." [1]


1 “BODILY STRESS SYNDROME” INFO SHEET, April 3, 2018


*Since February 2012, the construct selected to replace most of the ICD-10 F45.x Somatoform disorders and F48.0 Neurasthenia for the ICD-11 core edition has been Bodily distress disorder.

In July 2017, Concept: SCTID: 723916001 Bodily distress disorder (disorder) was added to SNOMED CT International Edition by the team working on the SNOMED CT and ICD-11 MMS Mapping Project as an exact match for ICD-11 term, Bodily distress disorder.

 

@Russell Fleming @Action for M.E.

It is now a week since questions were first raised, which seems to be ample time in which to have obtained instructions, or at least to acknowledge that the matters are under consideration and that a reply will be forthcoming. There is of course no obligation to respond, but, in the absence of a response, people will tend to draw their own conclusions from the available evidence.

The difficulty is that the fact that neither of you responds causes doubts to arise as to whether this is a co-ordinated non-response, and whether the decision is wholly a free one. There was no particular reason why frank and honest answers should have caused any great or insurmountable problems- at least for your organisations.

One would expect that there should within organisations such as yours be some experience of conflict resolution and a willingness to engage in some process. It will be disappointing if you think these matters unworthy of your attention. Charities should be aware of the saying that an end which requires unjust means is not a just end, though this saying might not receive much attention within Westminster.

 

As an afterthought, one wonders whether the membership of Forward ME has considered how damaging might be the perception that they have no power over, or responsibility for, the contents of the website of the organisation of which they purport to be members. This at a time when the organisation is seeking to represent ME sufferers on the international stage.

The alternative perception, that they are happy with the publication on their website of matters which any responsible advisor would tell them to remove, might be considered equally unhelpful.

 

Sorry, but I can't help.

I have barely had any time to visit this forum let alone answer any questions in recent weeks. I am sorry but I have been working flat-out in the lead up to and during ME Awareness Week and then desperately trying to catch-up with everything in the aftermath of what was our busiest Week ever.

I just don't have the current capacity to read through this thread (or others) and even attempt to answer your questions.

Why not write something to the Countess of Mar as Chair of Forward ME if your queries relate to organisational structure?

As for matters relating to ICD-11 and SNOMED etc. Suzy and I were corresponding in private earlier about all of this and she knows my own views; but since then things happened that were as much a shock to me as I am sure they were to her.

I try to work 4 hours a day for the ME Association and my role is website and social media. Matters relating to policy really need to be addressed to one of our trustees: I would suggest emailing our Chair of Trustees Neil Riley, or Dr Charles Shepherd:

Neil.Riley@meassociation.org.uk
Charles.Shepherd@meassociation.org.uk

Obviously I can't speak for Action for M.E. on these issues.

 

Thanks for that response @Russell Fleming . I understand the constraints. In the interests of clarification I did start a post enumerating the various issues which have arisen, but I abandoned that as it started to look like a letter before action, which seemed unhelpful, if that were to be your first sight of the thread.

I do not feel it particularly appropriate to enter into a private e-mail conversation. There are issues which should be known to the public and it is not for me to make public a private conversation. We have seen the difficulties that can lead to.

I wonder whether, if I create a post setting out the various issues you could bring it to the attention of those with authority to reply and then act as a conduit through which the reply could be posted. Alternatively we would, I am sure, be happy to have them join as members to post the response themselves.

For your reassurance, the matters do not constitute an attack on the MEA but do require consideration of actions of Forward-ME and the extent to which the "membership" is responsible and accountable for them. This has a bearing on wider issues.

Apologies for adding to your workload.

 

@chrisb Alternatively you could email as suggested by Russell, and make it clear in your email that your own email and any response will be public eg published on S4ME . More direct than requesting people join this forum that may not want to.

eta - you could take the same approach with AfME

 

Yes that is true, but it is a level of activity which may be beyond me for the moment. If MEA and AFME do not consider it expedient to protect their reputations by prompt and appropriate action, so be it. Perhaps we should give others the opportunity to distinguish themselves from the old ways.