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
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
(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.
(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.