This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Thursday 30 August 2007 and at an informal meeting of trustees the night before.
Neil Riley (Chairman)
Gill Briody (Company Secretary)
Tony Britton (Press, Literature and Fundraising)
Apologies received from Rick Osman
FINANCES, STAFF AND PREMISES
The underlying financial situation continues to remain stable. We are meeting our medium-term target of having sufficient funds in the unrestricted reserve accounts to cover all administrative and salary expenditure for a full financial year.
Further changes to our banking arrangements were made to ensure that all accounts are earning a high rate of interest.
Ewan Dale, Honorary Treasurer, updated trustees on the audit for the year ending December 2006.
New contractual arrangements for Tony Britton were discussed and agreed.
FUNDRAISING, SPONSORSHIP AND MEMBERSHIP
Trustees discussed a range of current and future fundraising initiatives. These included:
- Walking the Amazon – Barbara Stafford provided an update on this major fundraising initiative in support of research involving ME tissue and post-mortem material. More information can be found at the Walking The Amazon website (www.walkingtheamazon.com). The website now contains a very entertaining short video clip on how Ed Stafford and Luke Collyer walked 76 miles, and up 8 mountains (!), over three days without food as part of their preparations for the walk. There has also been some very positive interest from television companies.
- Encouraging results of the mobile phone return scheme announced in the July issue of ME Essential
- A similar scheme involving the return of used computer printer and inkjet cartridges – details to follow in the October issue of ME Essential.
We are still keen to hear from anyone who has company or other contacts that may be interested in sponsoring specific aspects of our work – in particular the MEA website; the ME Connect telephone information service; and the new issue of ‘ME/CFS/PVFS – An Exploration of Key Clinical Issues' – also known as the MEA purple booklet. Please contact Tony Britton (tbritton02@yahoo. com) if you might be able to help here.
MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES
Trustees were updated on MEA funded research studies that are either on-going or where results are being prepared for publication.
The research into gene expression being carried out by Professor John Gow at Glasgow Caledonian University is proceeding to plan – a progress report appeared in the July issue of ME Essential. Charles Shepherd reported on a meeting he had in July to discuss the possibility of further ME/CFS related research being carried out at Glasgow Caledonian University.
Dr Derek Pheby is in the process of submitting the final results of his study into multiple factors that may be involved in the development of severe ME for publication. A report on this study is planned for the October issue of ME Essential.
Dr Tony Ward's study is not yet complete and will be discussed next time.
The MEA is co-operating with (but not funding) a research study being carried out into the health benefits of pet ownership in a number of medical conditions, including ME/CFS. More information on this study will appear in the October issue of ME Essential.
Charles Shepherd updated trustees on various research studies that are being carried out as part of the PRIME Project and at the ME Observatory – where the study to collect a database covering a wide range of services available to people with ME/CFS is now underway. Trustees agreed to provide a donation of £1,000 towards the cost of research, including the recently completed study into patient-reported outcome measures, being carried out as part of the PRIME Project. The CHROME database, which contains information on a longitudinal study of people with long term and severe ME/CFS, is now available on the Prime website at: http://chrome. prime-cfs.org
Trustees discussed the latest statistics for the email part of this service. A restructuring of the email service has taken place and we would remind people that we cannot provide individual advice regarding benefits, diagnosis or management via ME Connect.
The ME Connect telephone service still requires volunteers with good listening skills to join our professionally trained and supervised team. If you are interested in volunteering – the hours are very flexible – please see the announcement on page 7 of the July issue of ME Essential.
ME Connect operates seven days a week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm.
Members should call: 0870 444 1835. Non members should call 0870 444 1836. Trustees decided that these telephone numbers will be merged into one number later in the year.
MEA LITERATURE AND MAGAZINE
Our fully updated 36 page guide (with nearly 200 references) to research, diagnosis and management of ME/CFS – ‘ME/CFS/PVFS: An Exploration of the Key Clinical Issues' – is now available. Copies can be ordered using the pdf literature order form on the MEA website or the insert in ME Essential.
Trustees agreed to send a complimentary copy of the booklet to all local ME groups. We currently hold a list of 64 such groups. The booklet will be mailed out by the end of September but if any local group fails to receive one please let us know.
New information leaflets in preparation include one on the Disability Living Allowance. The new MEA Disability Rating Scale, which also forms part of the purple booklet, can be ordered using the pdf literature order form on the MEA website.
Our medical emergency cards, given out free with the July issue of ME Essential, have proved to be very popular.
The MEA will be attending a meeting of the ME Alliance on 12 September.
Trustees disused arrangements for the MEA Annual Medical Meeting in Peterborough on 15 September at which Professor Richard Baker (Chairman of the ME/CFS Guideline Development Group) will be giving a presentation on the new NICE guideline. Afterwards there will be an opportunity to question Professor Baker and members of the team from NICE on the content of the guideline. There are still seats available for this important meeting. More details on the MEA website or on page 4 of the July issue of ME Essential.
The 2007 AGM will take place in early 2008 at a date and venue to be confirmed.
An announcement will be made in the October issue of ME Essential. In the meantime we welcome informal contact from anyone who is interested in becoming an MEA trustee.
NICE GUIDELINE ON ME/CFS
Trustees discussed the reaction to publication of the NICE guideline on ME/CFS on 22 August. A comprehensive MEA response is now being prepared. This response will be posted on the MEA website: www.meassociation.org.uk
ALL PARTY PARLIAMENTARY GROUP (APPG) ON ME
Trustees were updated on the proposal to hold an adjournment debate on ME/CFS once parliament returns from the summer recess. The proposal was put forward by John Bercow, MP for Buckingham, at the July meeting of the APPG following a meeting he held with MEA trustees and Gill Briody. More information on this important parliamentary initiative will follow on the MEA website and in the October issue of ME Essential.
The MEA has modified the briefing paper on current ‘hot topics' (NICE, NHS Plus, DWP guidance etc) that we prepared for John Bercow – copies of which are now available for members and local groups to make use of when lobbying the media and their own MPs.
We do not at present have a date for the next APPG meeting at which it is hoped the Rt Hon Alan Johnson, the new Secretary of State for Health will attend. The most likely date is a Thursday during November. Details will appear on the MEA website as soon as we have them.
DWP MEDICAL GUIDANCE ON ME/CFS – PUBLISHED JULY 2007
Although we believe that the new guidance remains unfit for purpose there is little more that can be done at present now that the DWP have decided to abandon any further discussion and publish Version 10.
We do, however, want to hear from people who are having difficulty in obtaining DLA – especially where this appears to be a direct result of the new guidance. At present, we have not received any feedback relating to the way in which the new guidance is being put into practice.
The next step, if the new guidance continues to perpetuate benefit discrimination for people with ME/CFS, is to bring this to the attention of the APPG and arrange for the Rt Hon Peter Hain, who is the new minister at the DWP, to appear before the group.
Charles Shepherd reported on a presentation he had been invited to give to DLA Decision Makers at their headquarters in Blackpool.
NHS PLUS GUIDANCE ON OCCUPATIONAL HEALTH ISSUES RELATING TO ME
Neil Riley reported on follow up to the meeting with Dr Ira Madan that he had attended in July with Sir Peter Spencer (AfME). An MEA statement on this meeting can be found in the August news section of the MEA website.
The MEA is currently consulting with charities and local groups involved in the joint response on the changes that Dr Madan is willing to make to the leaflets on employment as a result of this meeting. We will then respond to Dr Madan.
ANGELA FLACK AWARD
Trustees decided that following the recent unexpected death of former trustee and Chair, Christine Llewellyn, the award (for an outstanding medical or research contribution) would now become the Angela Flack and Christine Llewellyn Award.
SCOTTISH CROSS PARTY GROUP ON ME
Ewan Dale updated trustees on developments regarding this Scottish parliamentary group.
The new MEA website has become one of the most used sources of information on ME/CFS on the internet. Trustees discussed further development of the site.
DATE OF NEXT BOARD MEETING
This will take place on Tuesday 13 November 2007.
NB: This is a summary of the Board of Trustees meeting – not the official minutes.