[This post is an updated version of a posting first published on 2 November.]
The Countess of Mar’s meeting with ME patient organisations: how was it decided who would attend and what are its objectives?
On 8 October, in the hour prior to the last meeting of the APPG on ME, the Countess of Mar chaired a private meeting with selected ME patient organisations.
In his summary of the APPG meeting which followed, Dr Charles Shepherd (MEA) wrote:
“[…] The Countess of Mar has kindly agreed to chair a further meeting of the group which will allow a more detailed discussion of the issues to take place and look at how the various charities and organisations might work together on issues of common concern. She stressed that nothing was being done in secret and that the minutes of this meeting will be published in due course. The Countess of Mar is hoping to set up a website so that people can have easy access to the minutes and information about what the group is doing.”
The minutes of this private meeting have yet to be published and it’s still unconfirmed which organisations were invited to attend by the Countess of Mar, which organisations accepted her invitation and whether any organisations that had not been invited were successful in requesting that they should also be included.
Nor is it known what criteria were used by the Countess of Mar when deciding which organisations would be issued an invitation to participate in this meeting and any subsequent meetings that might be organised by her. What was the rationale, for example, for the inclusion of the non membership organisation, reMEmber (The Chronic Fatigue Society)?
From the little information that has emerged, it is understood that representatives of the following organisations had been invited to attend the meeting – the membership organisations AfME, The ME Association, AYME, The Young ME Sufferers Trust and The 25% M.E. Group; the research organisation ME Research UK, the non membership organisation reMEmber (The Chronic Fatigue Society) and BRAME (Christine and Tanya Harrison).
In the October issue of Invest in ME’s newsletter, Invest in ME writes:
“IiME were recently invited to attend a meeting organised by the Countess of Mar in which she attempted to find common ground between different organisations involved with ME. On the first occasion we weren’t able to make the meeting but we provided the following input by email to the Countess which stated our position in relation to a number of points requested from all attendees at the meeting and why we feel progress has not been made with regard to ME.”
Invest in ME has since published its position response which can be read here and a copy is also appended – though it wasn’t generally known that Invest in ME had been amongst those organisations invited to participate in this meeting.
It has been confirmed to me by Mary-Jane Willows (CEO AYME) that AYME had not been in a position to provide a representative to attend this initial meeting.
In October, Ian McLachlan published some concerns about this meeting and invited others to sign a statement which was forwarded to the Countess of Mar which can be read here
In a response to Mr McLachlan, in relation to a query about the inclusion of patient representatives, the Countess replied that she was open to receiving constructive written contributions from anyone within the ME community and the group will consider them.
If this is the case, why has the Countess of Mar not made this generally known and just what is the nature and remit of this “group”?
The Countess of Mar has mentioned plans for setting up a website for information about the business of this “group” – will this include a Statement of Objectives?
I have some questions and concerns about this meeting – or what now looks set to become a series of meetings to be chaired by the Countess of Mar:
1] On what basis and by whom was it decided how many and which organisations/patient representatives would be invited to attend the Countess of Mar’s meeting and any subsequent meetings which are planned? Did any other organisations/representatives apply to attend this meeting and were they turned down and if so, on what grounds?
2] We already have an established ME Alliance (albeit a rather nebulous body) who were understood to be reconvening earlier this year.
Who are the current members of the Alliance, who is the current convener and when is the next meeting of the Alliance anticipated? Does the current Alliance have a constitution and if so where can it be accessed? Does the Alliance intend to publish the agendas and minutes of any meetings it might hold in the future? Did the proposed meeting, earlier this year, take place?
How does the current Alliance relate to this series of meetings now being held between the Countess of Mar and selected patient organisations?
3] Is it the intention that these meetings with the Countess of Mar might evolve into a replacement for the current, possibly moribund, Alliance and if so, is the aim to be more inclusive of a wider range of patient organisations/patient representatives than the Alliance has embraced in the past, for example, by extending participation to include The 25% M.E. Group, BRAME, Invest in ME, reMEmber (The Chronic Fatigue Society) and possibly other organisations and representatives?
Was RiME invited to attend this meeting with the Countess of Mar and if not, what was the basis for RiME’s exclusion?
[I can now confirm that RiME was not invited to attend.]
If these meetings were to replace the current Alliance, then the appointment of the Countess of Mar to chair meetings of any new alliance/patient organisation group is another example of decisions made by the main charities behind closed doors, for the ME community has not been consulted over whether parliamentarians should be allowed membership of, or participation in an alliance of ME organisations/representatives or have influence over which organisations should be included in any reconstituted alliance.
3] Will the meetings of this “group” set a precedent for business being conducted away from public scrutiny at open APPG meetings to business being conducted at closed meetings?
Might these meetings lay the foundations for the current format of the APPG being replaced by an associate parliamentary group to which parliamentarians, the main charities and selected organisations are admitted membership but from which the ME patient community and members of the public would be excluded and representatives whose presence at APPG meetings may not be welcomed by the “establishment” group, marginalised?
Dr Ian Gibson has already expressed an interest in the concept of some kind of associate parliamentary group but one cannot assume that Dr Gibson’s vision of an associate group would necessarily accord with the needs and interests of the ME community. Many associate parliamentary groups also invite applications for membership from external agencies, commercial concerns, pharmaceutical companies and other interest groups. Would such a move be welcomed by the ME community?
4] What prompted the Countess of Mar to propose that she should hold this meeting with selected ME organisations? Does the Countess find it frustrating that the APPG on ME has to accommodate a range of diverse views amongst the various organisations as well as consideration of the views of members of the public who also attend these meetings or who have made written representations to the Chair of the APPG?
Is it envisaged that this “group” will be used as a filter of opinion and position on various issues which will then be fed back into the APPG as consensus, with a view to minimising discussion of certain issues at open APPG meetings – meetings which will then be used to rubber stamp decisions arrived at previously, behind closed doors?
We have already seen situations in the past where the “draft” wording for proposed EDMs and the “draft” Terms of Reference for the proposed NHS services inquiry have been put together in collaboration with one or more of the main charities and rushed through an APPG for agreement without adequate time for discussion and without prior consultation with the ME community over the content.
But whatever the rationale behind the calling of these meetings, Dr Shepherd has written: “The Countess of Mar is hoping to set up a website so that people can have easy access to the minutes and information about what the group is doing.”
Plans for a website and updates on “what the group is doing” suggests that the remit of this “group” is intended to be rather more proactive and enduring than merely the facilitating of a one-off discussion around “common ground”.
There seems to be some variance between the organisations invited to attend this meeting as regards to whether they prepared written responses in advance of the meeting to a series of questions on the Agenda.
I am advised that the 25% M.E. Group did prepare a written submission and copies were distributed to all those who attended the meeting. A copy is published, below. The 25% M.E. Group’s response sheet is signed “DJ” and I presume that Doris Jones attended the meeting as the representative for the 25% M.E. Group, though this has yet to be confirmed.
All organisations known to have participated have been asked whether they intend to publish any written responses submitted prior to the meeting or handed round at the meeting, itself. I have received no replies to date, from the ME Association, reMEmber (The Chronic Fatigue Society) or BRAME.
Address for letters of concern: The Countess of Mar, House of Lords, Westminster, London SW1A 0PW
25% M.E. Group: NOTES FOR CONSIDERATION TO BE BROUGHT UP AT THE 8.10.2008 MEETING WITH THE COUNTESS OF MAR
Main Aims and Objectives of the 25% ME Group?
a) Support severely affected members as well as possible with information and practical advice when needed.
b) Endeavour to secure appropriate treatment for severely affected members – CBT +/or GET are not meeting the needs of these patients.
c) Participate in talks, discussions and negotiations with governmental and other organisations in endeavours to secure a better deal for the severely affected, in relation to treatment, necessary social support and appropriate benefits.
d) Help to inform GPs and other healthcare professionals of the real nature of ME and the desperate need for proper help for patients.
What have been the obstacles to progress?
a) New Guidelines issued in 2007 by the DWP – Patients experience more problems getting necessary benefits.
b) The NICE Guideline – Patients report increasing problems in getting appropriate medical attention and care since the publication of this guideline.
c) The NHS Plus guideline on Occupational Aspects of the Management of CFS – A National Guideline – this has now been amended and hopefully will be more helpful for patients.
d) Disunity among UK ME/CFS Charities – some endorse the NICE Guideline, CBT and/or GET are accepted as being helpful to some patients with mild or moderate ME/CFS, but the severely affected find these approaches useless (CBT) and GET potentially harmful.
What are the solutions?
a) Put pressure on organisations like NICE to rewrite guideline or make necessary and appropriate amendments – support the applied for Judicial Review.
b) Put pressure on the DWP for necessary amendments to their new guidelines on CFS/ME.
It is important to bear in mind that ME/CFS is listed as a neurological disease not only in the WHO ICD-10 codes under G93.3, but it is also listed in the UK’s National Service Framework for longterm chronic conditions under neurological diseases, and it is listed as a neurological condition in the UK’s Read Code (under F286), which is used by GPs. Organisations like NICE, the DWP and others should be asked why they seemingly insist on maintaining an ambiguous stance on this issue.
How are the solutions to become actions?
a) It may be necessary to create or form a united UK ME/CFS (as opposed to CFS/ME) charity or Association which may be in a better position to put pressure on these organisations to stress the difference between the neurological disease ME/PVFS/CFS (as listed in ICD10-G93.3) as opposed to states of chronic fatigue, which come under various other headings and are deemed to be mental or behavioural disorders (such as Neurasthenia under F48) in the WHO ICD Codes.
b) Stress the different approach to diagnosis and treatment which is needed in these diseases and conditions. – CBT +/or GET may be beneficial to those patients who suffer from general chronic fatigue, but not those who suffer from the neurological disease ME/CFS (as most clearly defined in the 2003 Canadian guideline).
c) Achieve amendment of existing inappropriate / deficient guidelines (NICE + DWP).
d) Press the MRC and DoH/NHS for urgently needed funding to look into causes of ME/PVFS/CFS.
Invest in ME: Position responses tendered by Invest in ME for the meeting chaired by the Countess of Mar on 8 October 2008 which they were unable to attend:
Cooperation Between ME Organisations
IiME’s input to the first meeting between representatives from ME charities and organisations – as organised by the Countess of Mar – October 2008.
In preparation for this meeting participants were asked to provide comments on several points. IiME were unable to attend the first meeting but sent in the document below.
What are the aims and objectives of your particular organisation?
Invest in ME is an independent UK charity campaigning for better education regarding ME/CFS and a national strategy of biomedical research into ME/CFS which will lead to correct diagnosis, valid treatment and cures for ME/CFS.
Our intention is to provide, where possible, free advice and information to people with ME/CFS, their families and also to healthcare organizations, physicians, researchers and the media.
We achieve this with our educational material and our annual biomedical research conferences.
Our main objectives are to facilitate development of a test which can properly diagnose ME/CFS and to facilitate or participate in finding treatments and cures for ME/CFS.
What have been the obstacles to progress (in getting ME patients better)?
To get ME patients better we feel we have to look at this logically.
Firstly, the name itself.
If we are using different names then it is difficult to agree on a consensus and difficult for patients, healthcare organizations and the media to be consistent when dealing with ME/CFS.
Without agreement on the name of the illness for we are campaigning then it would be difficult to agree on anything else. For example the NICE definition of the illness (they use CFS/ME or CFS) with fatigue plus one symptom is bound to include almost anyone from depression to burnout to misdiagnosed, rare illnesses. This isn’t acceptable.
ME/CFS is as described in the WHO classification ICD-10 G93.3 and stands for myalgic encephalomyelitis. This name should be used as standard when referring to ME or ME/CFS.
We should standardise on this name and force a similar standardisation amongst healthcare organisations.
ME and ME/CFS are considered to be the same for the purposes of this document.
If the definition of the illness is vague (if the name is not agreed upon, the symptoms therefore not agreed, the diagnostic criteria not standardized) then, of course, the diagnosis and the treatment will be liable to be incorrect.
Misdiagnosis is a major problem.
To enable correct diagnosis then a set of diagnostic guidelines needs to be in place to enable proper and correct identification. The lack of a common set of guidelines has allowed too much flawed research to be funded thus wasting valuable time and money. This has been a major obstacle in obtaining progress for people with ME/CFS and has allowed far too many cases of missed or misdiagnosis to occur.
The lack of funding for biomedical research is a clear impediment to progress on treating and curing people with ME/CFS.
Without this then erroneous perceptions of ME can continue and valuable funding can be lost to flawed research priorities, enabling those not interested in curing people with ME to continue to monopolise scarce funding.
None of the above issues have been helped by the recent NICE guidelines. That document at best will do nothing and at worse will perpetuate false views of the pathology and therefore treatment of people with ME/CFS.
Therefore to summarise the first point the following obstacles are already in place –
a Lack of correct, standard terminology
b Lack of proper or correct diagnosis
c Lack of consistent clinical diagnostic criteria from being applied
d Lack of funding for biomedical research
What are the solutions?
Clear usage of one name for this illness – ME/CFS (as defined by WHO ICD 10 G93.3) – myalgic encephalomyelitis. This clearly presents problems for other groups who may rely on the subscriptions from a broad range of members with varying conditions, not all of them having ME/CFS. However, this is one of the reasons for lack of progress on clearly identifying the illness and appropriate treatment(s).
Standardisation on one set of guidelines for diagnosis. Currently the Canadian guidelines are clearly the best for ME/CFS as they have been purposely written for ME/CFS and are already in use in many countries. Adoption by everyone of the CG will send a clear message to all of the correct way forward.
The promotion of these guidelines in healthcare organizations and government circles will provide benefits for patients and healthcare staff and help to avoid misdiagnosis.
We need to establish a strategy of funding for biomedical research into ME/CFS in the UK. Funding needs to be made available and a concerted campaign needs to continue to lobby for this.
There needs to be an emphasis on establishing biomedical clinics to treat people with ME/CFS and the removal of clinics offering purely psychological therapies.
How are the solutions to become actions?
All organisations need to recognise Myalgic encephalomyelitis as the name for ME/CFS and also use ME/CFS when referring to the illness.
The Canadian Guidelines need to be adopted by all ME organizations and the government, DoH, NHS, CMO and MRC). The CG need to be distributed to all healthcare professionals treating people with ME/CFS.
Some of the actions required to benefit people with ME/CFS and their families will be outside the control of support organizations. However, the above points would standardize the “ME landscape” and influence, we believe, policy making. Once these basics are in place then it will directly affect the outcomes in other areas (such as benefits issues and inappropriate treatments being forced on patients by insurance companies).
Any clinics treating people with ME/CFS need to adopt a biomedical approach to this illness.
The peer review system of the MRC needs to be challenged and made transparent so that biomedical research applications are seen to be given as much of a chance for funding as is currently provided to psychiatric research proposals.
The current NICE guidelines need to be rejected by the ME community.