Forward-ME, Countess of Mar: Minutes available

Ed: The Countess of Mar was shortlisted for a Social Welfare Champion award in the “Charity Champions Award 2008″ (in Association with ePolitix and the parliamentary publication, The House Magazine).

The Countess had been nominated by reMEmber (The Chronic Fatigue Society), a member of Forward-ME.   The Social Welfare Champion award was awarded to Barbara Keeley MP.

Forward-ME

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

Ed: Forward-ME, the group convened by the Countess of Mar, was described in the Minutes of the APPG on ME meeting of 8 October 2008 as the “extended ‘Alliance’ group”.

I have been waiting since 20 November for Sir Peter Spencer to provide responses to my questions around the existing ME Alliance. See: 

https://meagenda.wordpress.com/2008/12/08/countess-of-mar-group-forward-me-website/

The website for Forward-ME is now live and Minutes of the meetings chaired by the Countess of Mar on 8 October and 18 October are now available.

From the home page:  http://www.forward-me.org.uk/

WHAT WE ARE – WHAT WE DO

Forward-ME consists of a fairly broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.

Forward-ME has no formal constitution. It exists to improve recognition, understanding, research, management, support and information for everyone whose life is affected by ME and CFS.

MEMBERSHIP

Membership of Forward-ME is by invitation, but any reasonable and constructive contributions to our deliberations from any individual or organisation representing people with ME will be considered by us.

PRINCIPLES OF WORKING

We seek to maximise consensus but respect those who have differing views.*

*Ed: RiME has been excluded from these meetings.

Members are free to opt in or out of specific group activities.

CONTACT US

By email to: Info@Forward-ME.org.uk

By Post to: Countess of Mar, Chairman Forward-ME, House of Lords, Westminster, London SW1A 0PW

Links to related organisations

These organisations all participate in the meetings convened by Forward-ME and their individual websites can be viewed using the links below.

Association of Young People with ME http://www.AYME.org.uk
Invest in ME http://www.Investinme.org
ME Association http://www.MEAssociation.org.uk
ME research http://www.meresearch.org.uk
Action for ME http://www.AfME.org.uk
Tymes Trust http://www.tymestrust.org
reMemberCFS http://www.remembercfs.org.uk/
25% ME http://www.25MEGroup.org
Blue Ribbon for awareness of ME http://www.Brame.org  

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Ed: Note that neither of these two meetings were attended by representatives for AYME and Invest in ME.

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Joint CFS/ME meeting on 8 October 2008

Opening statement

Countess of Mar

Welcome.

The trigger for my suggesting this meeting was my growing concern that very few MP’s attend the APPG meetings.

At the last one, as you know, by the end of the meeting there were only your Chairman and myself – preaching to the converted?

Until the message you want to convey is heard loud and clear by legislators and government your objectives will never be achieved.

I have been in the House of Lords for very nearly 33 years. I have taken an active role in some successful campaigns and have watched the progress of other winners. What comes to my mind immediately is that they have always been supported by a united, informed and determined base of people who want to win.

One of my husband’s favourite sayings is “emotion clouds reason”. I fully appreciate that ME is a physically and mentally sapping illness and that a failure to achieve can lead to emotional stress, dissent and division in the ranks. Over the years I have been made very aware of disagreements between the various representative organisations that, even when they are minor in fact, they are fairly major in effect. If I know about them then others who make the vital decisions at central and local level do so also. A difference of opinion – professional or lay, is a wonderful excuse for others to do nothing and doing nothing while going through the motions of construction is precisely what has been happening. I think of the CMO’s Report, the NICE Guidelines and all the advice emanating from the DoH and the DWP, for example.

I know that there are a lot of people with many brilliant ideas beavering away in their local communities. I have enormous respect and admiration for them. They are severely hampered by a lack of funds. Even if funds are made available, they are not powerful enough on their own to evade the bureaucratic sponges that soon mop up the cash.

Similarly, there are groups who collect money for research. They find scientists who, very often, will have a connection with ME and will conduct a small scale research project on a shoe-string. I cannot help but think that we could build upon the successes of MERUK, Professor Kerr and others if funds were pooled and the ME organisations were in position to demand that government match funding. This would lead to the provision of proper research facilities; would produce scientifically credible results, and would lead to acceptance of the reality of the disease by the professionals who have been so sceptical and have done so much damage.

I do hope that all of us here today will develop a strategy for bringing together all those who suffer from ME or are supporters and that we can then move on to transform the ME scene. Time is short so let’s go.

MINUTES OF THE FIRST JOINT ME/CFS MEETING HELD ON 8 OCTOBER 2008 IN THE HOUSE OF LORDS.

1. PRESENT:

Christine and Tanya Harrison – BRAME
Doris Jones – 25%ME Group
Bill and Janice Kent – remember*
Jane Colby – TYMES Trust
Peter Spencer – AfME
Sue Waddle – MERUK
Charles Shepherd – MEA

Margaret Mar – Chairman

*Ed: Registered with the Charity Commission as “reMEmber The Chronic Fatigue Society”

2. APOLOGIES: Mary-Jane Willows – AYME, Kathleen McCall – Invest in ME

3. WELCOME: The Chairman welcomed all the participants to the meeting. She explained the reasons for her invitation, what she saw as the objectives of all those working for people with ME and hoped that all those present would work together in order to achieve those objectives.

4. The Chairman invited each participant to make a brief statement of the aims and objectives of their organisation; what they believe have been the obstacles to progress; what solutions they propose and how they think the solutions should become actions.

5. OBSTACLES TO PROGRESS

Examples included:

(i) Nearly all the speakers were agreed that a major obstacle existed in the name and the image of the illness and until there was an agreed name progress would be difficult.

(ii) Guidelines issued by NICE, DWP and the NHS all produced difficulties for patients seeking appropriate treatment.

(iii) Ignorance and the attitude of medical professionals; misdiagnosis; the psychosocial/behavioural model and the lack of diagnostic guidelines caused major problems for patients.

(iv) Lack of biomedical research funding and of long-term follow-up of cohorts was mentioned.

(v) Disunity between UK ME charities and voluntary groups regrettably made it more difficult to address the above issues.

6. SOLUTIONS

Proposals included:

(i) ME should be separated from CFS and the WHO classification ICD-10 G93.3 should be adhered to. The fact that ME is also listed under the UK’s National Service Framework for long-term neurological conditions and that it is also listed as a neurological condition in the UK’s Read Code under F286 should be promoted.

(ii) All Government departments, particularly DoH, DWP and the Treasury, for example, should be challenged regarding (i) and asked to ensure that their guidelines comply with the listing.

(iii) Working in partnership, not only with other ME charities, but with others such as Disability Alliance and National Voices was essential.

(iv) Working together to raise awareness of the general public, the press and, in particular, of the medical profession of the seriousness of ME was also important.

(v) ME charities should work together to establish a strategy for biomedical research into disease mechanisms and with researchers and research organisations as well as the MRC to devise a common UK research agenda.

7. HOW ARE SOLUTIONS TO BECOME ACTIONS?

It was agreed that, whilst there were some differences of opinion on diagnosis and management between charities, these could be overcome if all agreed that there should be an open-minded approach to the challenges being faced. The Group agreed that they should be totally transparent in all their activities and that a website should be created upon which all papers, agendas and minutes of meetings would be placed.

It was suggested that the framework of the ME Alliance might be used as a vehicle for unity and that there should be an independent chairman. This would be discussed at the next meeting of the Group together with a constitution and activity programme.

8. NEXT MEETING.

It was agreed that meetings of the group should be chaired by an independent person and that the Countess of Mar should chair the next meeting.

The date of the next meeting to be arranged.

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FORWARD-ME

MINUTES OF THE MEETING HELD ON

TUESDAY 18 NOVEMBER 2008

AT THE HOUSE OF LORDS

PRESENT:

Christine and Tanya Harrison – BRAME
Doris Jones – 25% ME Group
Bill and Janice Kent – ReMEmber
Jane Colby – Tymes Trust
Peter Spencer – AfME
Sue Waddle – MERUK
Charles Shepherd – MEA
Margaret Mar – Chairman

APOLOGIES: Mary-Jane Willows – Ayme [sic], Kathleen McCall – Invest in ME

MINUTES OF MEETING ON 8 OCTOBER 2008.

The minutes of the meeting were amended and agreed.

MATTERS ARISING

There were no matters arising from the minutes.

CONSTITUTION OF FORWARD-ME

After some discussion it was agreed that:

(i) Forward-ME would have no formal constitution.

(ii) Membership would be by invitation from the chairman.

(iii) For the time being, all references to ME would be ‘ME and CFS’.*

*Ed: One presumes because some members of the group are representatives of organisations that use “encephalopathy”, and two members of the group are representatives of an organisation which operates under and is registered in the name of “The Chronic Fatigue Society”.

NICE AND BELIEFS ABOUT ME and CFS

(i) There was extensive discussion on the processes by which NICE arrived at the Guidelines; the reasons for the deficiencies that were pointed out at the time of publication, and the problems that have arisen since.

(ii) Judicial Review was to take place on 11 – 12 February 2009.

(iii) The possibility of separating CFS and ME was discussed. It was suggested that, as the NICE Guidelines were to be reviewed during 2009, Forward-ME should consider making a submission to NICE. This would be discussed at the next meeting.

(iv) It was agreed that the differing views on the NICE guidelines and Judicial Review would be respected.

JOINT ACTIVITIES

A. Welfare Reform Green Paper

(i) The AfME and BRAME reports – No one written off: problems and potential solutions for people affected by chronic fluctuating conditions (see AfME website) and No one written off – BRAME’s response to the Welfare Reform Green Paper (see BRAME website) were discussed briefly.

(ii) It was agreed that the need to overcome the problem of patient derived evidence being dismissed as ‘grey material’ was pivotal. The means by which this was done for the CMO’s 2002 Report were discussed. Expert advice would be sought.

(iii) AfME and MEA would be monitoring experiences that PwME have with the new benefits system. Other charities and voluntary organisations were invited to contribute. The possibility of creating a common questionnaire was discussed. Interested members would initially combine their expertise in order to create an agreed format to be produced by early spring.

(iv) The questionnaire would be made available to anyone interested through the Forward-ME and respective charity and voluntary groups’ websites. The results would be analysed and published.

B. APPG Inquiry into NHS Services for People with ME

(i) Whilst the Inquiry was welcomed in principle there were several practical problems including timing, questionnaire and resources, all of which would have to be resolved by the APPG.

C. Research Agenda

(i) It was agreed that charities and voluntary groups should act together to press the MRC to take more positive action to bring about biomedical research into disease mechanisms as a matter of urgency. This scientific research should address essential questions about the aetiology and pathogenesis of the illness with a view to developing preventative and curative treatments, as well as a diagnostic test.

(ii) The valuable contributions charities and voluntary organisations can make to research include patient participation, funding pilot studies and promoting research findings. To this could be added in future (subject to funding), funding research fellowships and PhD student grants.

(iii) AfME and MEA had been invited to a meeting with Professor Stephen Holgate and his new MRC advisory group. This would take place on 15 December 2008 and would include discussion about the framework for a workshop to be held in 2009. They would report back to the next meeting.

FORWARD-ME WEBSITE

(i) ‘Forward-ME had been registered on the internet and the website address was http://www.forward-me.org.uk. A web manager had been appointed.

(ii) The site would be kept simple, with links to the other charities and voluntary organisations which would be free to publish any documents they had submitted to Forward-ME if they wished.

(iii) All material to be put on the site would have the prior approval of members of the group.

ANY OTHER BUSINESS

(i) there was some discussion about a private letter written to a correspondent by the chairman in which she outlined her views on NICE and CBT/GET. She responded to several questions from the 25% ME Group.

(ii) It was suggested that Forward-ME could look at the shortcomings in NHS provision including waiting lists and availability of consultants. It was agreed that this was what the APPG was proposing to examine and that Forward-ME should not pre-empt the APPG inquiry.

DATE OF NEXT MEETING

The date of the next meeting to be arranged.

Ed: I can find no copies of the positions statements which some organisations submitted prior to the meeting or handed round at the meeting itself. The position statements of The 25% ME Group and Invest in ME can be read at the end of this posting on ME agenda.  I had been advised that it had been planned to publish these on the Forward-ME website.

https://meagenda.wordpress.com/2008/11/10/the-countess-of-mars-meeting-with-me-patient-organisations/

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