This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Thursday 24 January 2008.
The summary also covers some matters that were discussed at an informal meeting of three trustees (NR; CS; BS), Gill Briody and Tony Britton the day before and over dinner the night before.
On Thursday trustees joined members of staff and office volunteers for a delayed Christmas lunch.
Rick Osman (Vice Chairman)
Neil Riley (Chairman) joined the meeting by telephone link up from home.
Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)
Apologies received from Vivienne Sutton (Associate Trustee)
FINANCES, STAFF AND PREMISES
Due to the likely termination of our current rental agreement, there is a strong possibility that The MEA will have to relocate to new premises in Buckingham in the very near future. The previous day a small group looked at two possible locations and reported back. Trustees agreed that there were two options available at one of the premises that are appropriate to our needs and budget and agreed to pursue them further.
Otherwise, no significant developments to report.
The underlying financial situation continues to remain fairly stable and we are still meeting 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. We do, however, have just over 400 members who pay by standing order and no longer pay the current membership fee despite repeated reminders.
A summary of the audited accounts for the year ending December 2006 can be found in the January issue of ME Essential magazine. A full copy of the accounts can be sent to members on request. Trustees agreed that subject to expected changes to the legal status of charitable companies we should move from producing a full audit of the annual accounts to a simpler and slightly cheaper accountant’s report for the year ending December 2008.
Trustees completed work on new guidance relating to trustee expenses.
MEA ANNUAL GENERAL MEETING AND TRUSTEE ELECTIONS
Arrangements for the AGM on Saturday 19 April were formalised. This will take place at 2pm. The venue is once again The Littlebury Hotel, Bicester. Further details can be found in the January issue of ME Essential magazine.
Two current trustees – Neil Riley and Rick Osman – will be standing for re-election at the AGM. A voting paper can be found in the January issue of ME Essential magazine. Voting papers must be returned to Head Office by midday of Friday 11 April at the very latest.
Walking The Amazon:
Barbara Stafford updated trustees on all the various initiatives being planned in association with Walking the Amazon – a two year event that is already raising funds for the MEA and five other national charities. Money raised for The MEA will be ring-fenced for research purposes and will be used to support our aim of setting up a national tissue bank and post mortem facility for ME/CFS. Tickets can still be purchased for the first event – a send off party for Ned and Luke that is going to be held on board HMS President, a large boat moored on the Thames Embankment – on the night of Saturday 2nd February. More details about this event can be found on the MEA website or in the January issue of ME Essential. Tickets for this event can be obtained from Barbara Stafford. The walk itself is due to start at the beginning of April.
Mobile phone returns:
Mark Douglas reported that this new fundraising scheme is continuing to do well. Anyone with an unwanted mobile phone can still request a prepaid envelope from Head Office and then return their phone to Greener Solutions in Surrey. There is a free courier service available for 20 phones or more!.
A number of other possible fundraising initiatives for 2008 were discussed and trustees agreed to set up a small sub-group to concentrate on fundraising matters.
MEA-FUNDED RESEARCH AND OTHER RESEARCH ISSUES
Professor John Gow’s study into gene expression at Glasgow Caledonian University:
A new research assistant has been appointed and work is running according to plan.
Collaboration with new research proposal:
Having been offered the opportunity to do so by an academic research team, trustees agreed that The MEA should collaborate in a new research proposal involving patient feedback that is being submitted for funding.
Charles Shepherd reported on a meeting of the ME Observatory Steering Group held on 11 January at which progress on the six research studies being carried out with funding from the National Lottery was discussed. There is still a need to recruit more people from minority ethnic communities to help with one of the studies. More information can be found in the ME Observatory announcement in the January news archive on the MEA website.
Charles Shepherd will be attending the next meeting of the Steering Group.
The MEA is adding its support and/or presence to research meetings in Southampton, Cambridge and London over the coming months that are designed to promote and explain the biomedical model of ME/CFS. Further details on these three conferences can be found on the MEA website (>> Events Calendar) and in the January issue of ME Essential. These meetings are open to both health professionals and people with ME/CFS.
Adjournment debate on ME/CFS
The attempt by John Bercow MP to secure a place in the parliamentary ballot for adjournment debates has not yet been successful. John Bercow has informed us that he will continue to enter the ballots.
All Party Parliamentary Group (APPG) meeting on Tuesday 22 January
Charles Shepherd and Tony Britton reported on the APPG meeting held two days earlier.
The APPG received updated reports on a number of current issues of concern: DWP benefit guidance; NHS Plus literature, NHS services etc.
The main part of the meeting was devoted to a presentation from Ann Keen MP, Parliamentary Under Secretary at the Department of Health. Afterwards, Ann Keen answered questions from MPs and members of the public.
A summary on this meeting can be found on the MEA website (>> News). The MEA is also preparing the minutes this time and these will be published later.
Scottish Cross Party Group:
Ewan Dale reported on a meeting of the CPG that was held on Wednesday 23 January. Part of this meeting was devoted to discussion on proposed new guidance on ME/CFS for Scottish doctors that will cover diagnosis and management.
Trustees discussed the outcome of correspondence that had been sent to Dr Ira Madan by Neil Riley on behalf of the various charities and groups that agreed a joint response to the content of the NHS Plus leaflets on occupational health issues. The outcome is that the points raised by the charities have been considered by Dr Madan and she is currently in the process of preparing revised versions of all the three leaflets. Further information on the revision will appear on The MEA website once we hear back again from Dr Madan.
The MEA is keen to monitor the development of new clinical services that are being planned or brought into operation by PCTs as a result of the NICE guideline. We have prepared a pilot questionnaire to go out to those involved in the development process. Our first report back has come from the new service being planned for Portsmouth. A copy of the questionnaire can be found in the January issue of ME Essential.
Medical Research Council (MRC)
As no reply has yet been received to the letter that was sent in December to Professor Leszec Borysiewicz – new Chief Executive at the MRC – regarding the absence of MRC funding for biomedical research, a further letter will be sent. A copy of The MEA letter can be found on the MEA website in the December news archive.
NICE Guideline on ME/CFS
Trustees discussed what form of multidisciplinary management option we might put forward as an alternative to the NICE management recommendations that are largely based around the use of cognitive behaviour therapy (CBT) and graded exercise. As part of this initiative a questionnaire on all aspects of management will be prepared for the April issue of ME Essential.
ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE
All is running smoothly with both the telephone and email service. Volunteers recently had a training session on CBT and a new ME Connect leaflet on Counselling is being produced. A new monitoring procedure for counsellors who advertise in ME Essential was also approved.
MEA LITERATURE, ME ESSENTIAL MAGAZINE AND MEA WEBSITE
New MEA literature now available includes leaflets on CBT and Employment. We have a revised version of ‘ME/CFS – Your Questions Answered’. and a revised Briefing Paper on Current Concerns’ for the benefit of the media and politicians. A new leaflet on Counselling is being prepared by ME Connect.
Trustees discussed the introduction of MEA website links to commercial companies.
DATE OF NEXT BOARD MEETING
This will be held on Friday 18 April 2008. A further short meeting will be held on the morning of Saturday 19 April – before the AGM takes place in the afternoon.
NB: This is a summary of the Board meeting – not the actual minutes.