This is a summary of key issues that were discussed at three meetings of The ME Association.
The first Board of Trustees meeting was held at the Whiteleaf Business Centre, Buckingham on Friday 18 April from 2pm to 5pm.
The second Board meeting was held at The Littlebury Hotel, Bicester on Saturday 19 April from 10am till 12.30pm.
The AGM and results of trustee elections took place at The Littlebury Hotel on the afternoon of Saturday 19 April.
Trustees also held informal discussions on the Friday evening.
As both Board meetings coincided with the move of our Head Office to new premises just outside Buckingham we were unable to hold these meetings in our normal office space.
And as a significant part of both Board meetings was taken up with administrative matters relating to our move to new premises, and preparations for the Annual General Meeting and Trustee Election, the summary of these two Board meetings is shorter than usual.
In view of the constraints on both time and facilities being imposed by the office move, a decision was made to defer a meeting with a local ME charity, to discuss how we might help with a specific project, to our next meeting.
Ewan Dale, Mark Douglas, Neil Riley (Chairman), Charles Shepherd, Barbara Stafford.
Gill Briody (Company Secretary), Tony Britton (Publicity Manager)
Apologies received from Rick Osman (Vice Chair)
FINANCES, STAFF AND PREMISES
The underlying financial situation continues to remain fairly stable and we are continuing to meet our medium term target of having sufficient funds in the unrestricted reserve account to cover all administrative and salary expenditure for at least a full financial year. But like many small charities our central problem remains the fact that income from membership fees only pays for about half of our total expenditure – which means that a significant part of staff and trustees time still has to be devoted to various fundraising initiatives.
The move to new premises, which are costing slightly less in rental than we were paying for our previous premises, will obviously involve some additional expenditure – ie for removal costs, legal fees etc – during this financial year. Overall, these plus and minus costs should balance out.
Gill Briody reported that the move had gone smoothly so far and that all our property had been safely transported to the new location. It is hoped that staff will be able to resume relatively normal working regarding emails, telephone contacts etc fairly soon. As we are the first tenants to move into a new building there are the inevitable teething problems – so it may take a week or so before we are operating at a completely normal level again. Trustees thanked Gill Briody, staff and volunteers for the way in which everyone had coped with what has been a difficult couple of months and a very busy week.
Our new address is:
The ME Association
7 Apollo Court
Buckinghamshire MK18 4DF
Phone number and email contact details remain the same.
NB: Postage rates went up in April and we are now receiving a significant volume of post with the incorrect postage – which we have to make up with an expensive Royal Mail surcharge if the letter is going to be delivered. If you are writing to the MEA please make sure that the correct value stamp is being used.
No other significant developments to report.
Walking the Amazon:
Ba Stafford reported on the latest news from this major fundraising initiative. The fundraising ‘send off' party on the River Thames had raised over £7,000 for the MEA Ramsay Research Fund and Project Peru (roughly £3,500 each). The two explorers have now started their walk, and are making their way to the source of the Amazon. More updated information can be found on page 7 of the April issue of ME Essential magazine and on the Amazon blog of their expedition: http://www.walkingtheamazon.com
Mobile phone returns:
Mark Douglas reported on a further good financial return from this fundraising initiative. There are now plans in place to introduce a computer ink cartridge recycling facility – more details and envelopes will appear in the July issue of ME Essential magazine.
Ba Stafford also reported on the work of the fundraising sub-group and trustees discussed a number of other new fundraising proposals. Details of this year's Raffle will appear in the July issue of ME Essential.
MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES
Professor John Gow's study into gene expression at Glasgow Caledonian University:
A short progress report from John Gow, along with a request for blood samples from volunteers with a consultant confirmed diagnosis who are willing to take part in this study into the role of abnormal gene expression in ME/CFS, can be found on page 8 of the April issue of ME Essential magazine.
Charles Shepherd reported on a meeting of the Steering Group that had taken place in London on 4 April. Verbal and written progress reports from the three academic institutions involved in all six epidemiological studies were reviewed.
Charles Shepherd reported that no firm meeting has been fixed for the next Steering Group meeting.
Correspondence with the Sir Leszec Borysiewicz, Chief Executive at the Medical Research Council:
The MEA Association has now received a reply from the MRC Chief Executive in which a meeting to discuss our continuing concerns about the lack of government funded research into the underlying physical cause of ME/CFS can be discussed. A date for this meeting has not yet been arranged. The exchange of correspondence will be placed on the news section of the MEA website: https://meassociation.org.uk shortly. The letter from the Chief Executive also notes that a multidisciplinary MRC research group is being set up by Professor Stephen Holgate (University of Southampton) to look at research into aetiology and subgrouping.
New research proposal
Trustees discussed a new application for research funding. This relates to a small epidemiological study. Trustees agreed to hold further discussions with the research group involved. More information will follow if we decide to fund this proposal.
MEA MULTI-DISCIPLINARY MANAGEMENT INITIATIVE AND QUESTIONNAIRE & ME AWARENESS WEEK
Trustees reviewed progress on the preparation of a questionnaire that has been designed to assess what forms of management people with ME/CFS have found to be effective/ineffective; what forms of management they want to have access to; who they want their management to be co-ordinated by, and where in the NHS they want it to take place. The results will then form the basis to our plan to produce an alternative approach to the NICE management guideline and one that would be welcomed by the patient community. The electronic version of the management questionnaire will be launched on the MEA website as part of our Awareness Week initiatives. A paper version will be included in the July issue of ME Essential. More information on ME Awareness Week will appear in the April issue of ME Essential magazine.
MEETINGS AND CONFERENCES
Charles Shepherd reported on this very successful biomedical conference that was held on 12 February. A detailed report on the presentations can be found on pages 16 – 17 of April ME Essential. A DVD of the meeting will be available in due course – see the April issue of ME Essential for more details.
Royal Society of Medicine meeting on 28 April:
After an exchange of correspondence with the Royal Society of Medicine it has now been decided that the MEA can have a stand at this meeting, which is being heavily criticised for its bias towards the mental health model of ME/CFS. The MEA will be represented by Neil Riley, Charles Shepherd and Tony Britton, and we intend to use this opportunity to explain to health professionals attending why people with ME are unable to agree with the NICE guideline on ME/CFS, and why they feel so unhappy with the current MRC research agenda. A member of the MEA has very generously agreed to cover all of our costs that will be involved.
Other medical meetings:
The MEA will be represented at the forthcoming MERUK conference in Cambridge. We hope to have a presence at the Invest in ME conference on 23 May.
MEA annual medical meeting:
Trustees discussed a number of options and possible venues for our annual medical meeting, which normally now takes place in September or October. The preferred option at present is to hold a Question and Answer session with a panel of speakers somewhere in the South East of England.
John Bercow MP has informed The MEA that he is still attempting to obtain a place in the parliamentary ballot but has not been successful so far.
We are still waiting to hear whether a meeting with Lord Darzi can be arranged to discuss our concerns over NHS services. A further reminder letter has just been sent from a group of ME charities. No date for the next APPG meeting has yet been fixed.
Ewan Dale reported on the most recent meeting of the Scottish Cross Party Group and the six month extension relating to plans to publish clinical guidelines on ME/CFS for health professionals. Trustees agreed to the MEA booklet for health professionals – ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues' – being used as a key source of information.
ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE
Trustees discussed the final 32 page report to the Department of Health on work relating to the Section 64 funding for this service. Trustees also finalised a new guideline on confidentiality for everyone involved with this service.
MEA LITERATURE, ME ESSENTIAL MAGAZINE AND MEA WEBSITE
New MEA literature includes information sheets on CBT, counselling, the Blue Badge Scheme, and Holiday Health (including vaccinations). A new information sheet on Vitamin D deficiency is being prepared. A full list of MEA information literature and books can be found on the pdf ORDER FORM on the website or the insert in the April issue of ME Essential magazine.
ME Essential magazine:
Tony Britton reported that the April issue will be posted out to members next week. Once again, we have managed to produce a 44 page issue. Also included is an A4 sized ME Connect poster which we hope people will ask to be displayed in surgeries, hospitals etc during ME Awareness Week.
Trustees discussed the issue of website links to commercial companies and agreed to continue with the policy of allowing some paid advertising on the site.
DATE OF NEXT BOARD MEETING
This will be held on Tuesday 24 June 2008.
NB: This is a summary of the two Board meetings – not the actual minutes. It is not in the exact order that these subjects were discussed.
ANNUAL GENERAL MEETING: SATURDAY 19 APRIL AT THE LITTLEBURY HOTEL, BICESTER
Business consisted of:
* Chairman's Report
* Financial Report for the year ending December 2006
* Re-appointment of Larking Gowan as auditors
* Trustee Elections:
Neil Riley 353 votes for; none against
Rick Osman 342 votes for; 7 against; 4 abstentions
Both trustees were re-elected
Neil Riley was unanimously re-appointed as Chair
Rick Osman was unanimously re-appointed as Vice Chair
Ewan Dale was unanimously re-appointed as Treasurer
A full report of the AGM, including the Chairman's report, will appear in the July issue of ME Essential magazine.