This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Tuesday 17 April 2007
Neil Riley (Chairman)
Gill Briody (Company Secretary)
Tony Britton (Press, Literature and Fundraising)
Barbara Stafford joined the whole meeting by telephone link-up
Apologies received from Rick Osman
FINANCES, FUNDRAISING, STAFF AND PREMISES
There were no significant developments to report.
Ewan Dale, Honorary Treasurer, noted that the financial situation remains stable and that we are continuing to meet our target of having sufficient funds in the unrestricted reserves to cover all administrative and salary expenditure for a full financial year. Arrangements are being made to carry out the audit for the year ending December 2006.
A number of new fundraising initiatives were discussed including a mobile phone return scheme; a sponsored walk along the entire length of the River Amazon (3977 miles – never been done before!) by Barbara Stafford’s son and a friend; and progress on a 2008 Calendar (which will be our priority item at Christmas).
The need for sponsorship of the new MEA website and the 2007 edition of the ‘purple booklet’ for doctors and health professionals was discussed – if anyone has any contacts with companies or organisations who may be willing to sponsor these key projects please get in touch with Tony Britton at the MEA (email: email@example.com)
Proposals for a new first time joining membership offer were discussed. This will include up to £10 of items of MEA literature (plus a copy of the purple booklet) for new members who agree to pay by standing order – which can be monthly, quarterly or yearly to suit financial circumstances.
2007 AGM AND TRUSTEE ELECTIONS
Trustees discussed a preliminary timetable for this year’s AGM and trustee elections. Our intention, at present, is to again hold the AGM in Bicester on a date to be announced.
2007 MEDICAL MEETING
Trustees decided to look at holding this year’s open medical meeting in Peterborough, probably on the afternoon of Saturday 15 September. A number of possible venues in the town were discussed. As the most important event of the year is likely to be publication of the NICE guideline in August, it was decided to invite Professor Richard Baker, Chairman of the NICE Guideline Development Group to give a presentation and then answer questions. Further speakers will be announced later.
MEA FUNDED RESEARCH
Charles Shepherd reported that he will be meeting Professor John Gow at the end of the week in London at the Melvin Ramsay Society meeting to discuss the MEA funded research study into gene expression that he and colleagues are carrying out at Glasgow Caledonian University.
The terms and conditions relating to small research grants (ie up to £2,000) were reviewed. A summary of the work of the MEA Ramsay Research Fund is being prepared for the website. This will cover research that has been funded; research in progress; and what sort of research the MEA would welcome applications for in the future.
Trustees discussed a further proposal relating to the establishment of a UK post-mortem and tissue bank facility. It was agreed that Charles Shepherd would meet with interested researchers to discuss this further.
Charles Shepherd reported on an excellent meeting on good practice in charity funded medical research that had been organised by the Association of Medical Research Charities. He also reported on the most recent PRIME Project meeting.
GIBSON INQUIRY, PARLIAMENTARY EARLY DAY MOTION (EDM) AND ME AWARENESS WEEK
As described in the March issue of ME Essential, it was our intention to make use of Dr Ian Gibson’s Early Day Motion (EDM) to highlight a number of issues of major concern relating to ME as our contribution to ME Awareness week. Unfortunately, a small number of people who actively campaign on the internet, and have been very critical of the Gibson report, have objected to the proposed wording of the EDM. As a result Dr Gibson has decided to defer taking forward the EDM for the time being. We have no further information as to when this EDM will now be tabled for members of parliament to sign up to. The original wording of the EDM can be found on pages 6-7 of the March issue of ME Essential.
BENEFITS: ME ESSENTIAL SURVEY
Barbara Stafford updated trustees on the analysis of nearly 400 questionnaires that have been received. A report of this survey, which has been carried out in conjunction with the 25% Group, will appear in the July issue of ME Essential.
BENEFITS: DWP MEDICAL GUIDANCE ON ME/CFS
We have received no further communication from the DWP regarding the final version of this guidance, which the ME Association regards as still being unfit for purpose. Our understanding is that the guidance will now be brought into use in June without any further discussion. Once it has been introduced we would welcome feedback from people who believe it has affected a decision to either award or reject an application for either component of Disability Living Allowance.
NICE GUIDELINE ON ME/CFS
Trustees discussed on-going correspondence with NICE in relation to a request for key information on the preparation of the ME/CFS guideline that they are not willing to release. This request was made by the MEA in March under the Freedom of Information Act. Having been refused we have decided to ask for the decision to be internally reviewed by NICE. If this fails we will ask the Information Commissioner to adjudicate.
Having postponed the intended publication of the NICE guideline in April, our understanding is that publication will now take place in August and that there will be no further opportunity for stakeholder consultation on any of the revisions that are being made to the September draft.
HOUSE OF COMMONS SELECT COMMITTEE ON HEALTH INQUIRY INTO NICE
Neil Riley reported that the joint charities submission to this inquiry, which has been co-ordinated by the ME Association, has now been submitted. The response is available in the news section of the MEA website (look in the March archive).
NHS PLUS DOCUMENTS ON OCCUPATIONAL HEALTH AND ME/CFS
Neil Riley reported on a further joint charities statement that has been co-ordinated by The ME Association. The wording of this response has now been agreed by most of the main ME/CFS charities, as well as a considerable number of regional and local ones. It will be sent very shortly. It is also hoped that the NHS Plus guideline will form the main item for discussion at the next meeting of the All Party Parliamentary Group on ME. The date for this APPG meeting (probably mid May) has still to be arranged.
MEA LITERATURE AND MAGAZINE
Preparation of a fully updated (third) and enlarged version of the MEA ‘purple booklet’ for health professionals – ‘ME/CFS/PVFS – An exploration of the key clinical issues’ – is proceeding to plan. We hope to have this new edition ready for distribution in June, or July at the latest – but certainly well before the NICE guideline appears in August. In the meantime there will be a short gap where we have no more of the current purple booklets to distribute.
We are currently out of stock of the Canadian Guideline booklet and are trying to obtain further supplies.
We are now in a position where the MEA has a larger selection of books, booklets and patient information leaflets covering all aspects of ME/CFS than any other national patient support charity. Our 4 page literature order form is inserted into the current issue of ME Essential. It is also available to download from the MEA website.
The next issue of ME Essential will be in July.
Trustees discussed the latest report covering the work of ME Connect and the Section 64 funding. We are about to start the third and final year of DoH funding. A recent problem relating to the success of this service has been a significant increase in the number of email enquiries we are receiving. A new ‘gatekeeper’ system for dealing with email enquiries is now in operation and working well with almost all emails receiving a response within a few days.
The content of 2007 training sessions for ME Connect volunteers was also discussed. Following the success of the pilot study involving questionnaires to local groups on how we can help them with their work we are intending to make contact with a much larger number of groups during 2007.
ME Connect is open 7 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
The new MEA website, which was launched a few weeks ago, has been very well received – judging from feedback and the very large number of hits being recorded. However, we are still in the process of adding to and altering the content. So we continue to welcome constructive comments about how the website could be further improved.
DATE OF NEXT MEETING
This will take place on Tuesday 12 June 2007
NB: This is a summary of the Board meeting – not the official minutes