MAY BE REPOSTED
This is a brief summary of key issues that were discussed at the February 2007 meeting of the ME Association Board of Trustees. A full meeting was held on Friday afternoon (February 16th) at the MEA Head Office in Buckingham and on Saturday morning (17th) at the Littlebury Hotel, Bicester prior to the EGM and AGM. A brief meeting followed the EGM and AGM that took place on the Saturday afternoon.
Rick Osman (Saturday only)
Neil Riley – Chairman
Gill Briody – Company Secretary
Tony Britton – Press, PR and Fundraising (Saturday only)
Trustees remembered Angela Flack – who died in January. It was decided to consider some form of permanent tribute in memory of Angela after discussion with her family.
FINANCES, FUNDRAISING, STAFF AND PREMISES
We have now achieved our short to medium term target of securing sufficient funds in the unrestricted account to cover all administrative and salary expenditure for a full financial year. This is a considerable achievement given the very difficult and uncertain financial situation that the Board inherited in December 2003. However, like many charities, our income from membership fees only covers approximately half of our general expenditure. Without donations and fundraising activities we would not be able to offer the increasing range of services and campaigning activities that we currently participate in.
A number of fundraising initiatives were discussed and it was decided to hold a special meeting devoted to this topic.
Staff salary reviews were discussed and we are now in a situation where all members of staff will have a January review.
Attention was again drawn to the fact that despite numerous reminders a significant minority of members who pay the old (£15) membership fee by standing order are unwilling to change their instructions to their bank to the new (£18) yearly rate. The MEA has no authority to request a bank to do this. As has been pointed out previously, it currently costs us around £35 per year to provide all the membership services that we offer and we have a duty to run the charity in a cost-effective manner. Trustees agreed that it would not be appropriate to simply terminate access to services in these circumstances but did decide that anyone who is unwilling to alter their standing order would now be regarded as a non member for the purpose of voting rights.
Trustees discussed the latest developments and initiatives in relation to the five ‘hot topics' that are likely to dominate our workload and campaigning activity over the coming months. These are:
DWP Guideline We understand that the final version (ie draft 9), which the MEA still regards as unfit for purpose, will come into use in June 2007. More information on this, including the joint response from ME/CFS charities, can be found in the March issue of ME Essential. A copy of the new guidance can be found in the news section of the MEA website at www.meassociation. org.uk.
Gibson Inquiry A summary of the meeting held on Tuesday 6 February will appear in the March issue of ME Essential. The purpose of this meeting was to provide feedback – both positive and negative – on the report and then discuss how it might be used to challenge some of the official guidance on ME/CFS that is currently being prepared by NICE etc. A summary of points made to the Inquiry team by the MEA – either in writing or during the meeting – is available in the news section of the MEA website (>> February archive). Dr Gibson is intending to produce an Early Day Motion (EDM) relating to the report and it is hoped that as many MPs as possible can be persuaded to sign. More information on this will appear on the MEA website news section when we receive it.
NICE guideline Following all the complaints from charities, doctors and MPs, NICE has announced that they are no longer intending to introduce this controversial new guidance on diagnostic assessment and management in April 2007. The current intention is to introduce it in August 2007. The MEA will continue to campaign for a complete rewrite of the NICE guidance, along with input from health professionals who do not agree with the psychosocial model of cause and management. It was noted that Professor Michael Rawlins, Chairman of NICE, had originally agreed to give a presentation and answer questions at the next APPG meeting. We have now been informed that Professor Rawlins is no longer able to attend and his place is therefore being taken by another representative. Neil Riley reported on the MEA initiative to produce a joint letter from ME/CFS charities and organisations to the House of Commons Select Committee on Health, who are currently investigating NICE.
NHS Plus Guidance Neil Riley reported on an MEA initiative to produce a joint statement from ME/CFS charities and organisations concerning what we regard as unacceptable guidance relating to employment and ME/CFS that was published in late 2006 by NHS plus.
All Party Parliamentary Group (APPG) on ME Items for the Agenda for the next APPG meeting on Thursday 22 February were noted. Besides the presentation from a representative from NICE, this will include a discussion on the new Mental Health Act and Mental Capacity Bill.
NEW MEA WEBSITE
Neil Riley reported that after a great deal of work over the past few months the new MEA website has now been successfully launched. Some parts of the site are still under construction and additions have still to be made in some sections. So far, all the website statistics indicate that a considerable number of people are making use of the site. We welcome feedback from anyone who wishes to comment on the design, content, navigation etc of the new site.
Ewan Dale briefed trustees on a number of topics relating to Scotland – in particular the recent meeting of the Cross Party Group at the Scottish Parliament and the scoping initiative that is designed to assess the need for clinical srvices and medical information on the illness in Scotland. More information will appear in the March issue of ME Essential.
Trustees were briefed on various research initiatives.
Professor John Gow The study into gene expression in ME/CFS at Glasgow Caledonian University is now moving forward once again and a full time research assistant – Dr Gillian Gibson – has been appointed. More information on this MEA funded study is available on the MEA website and will be in the March issue of ME Essential.
Post-mortem research A plan to establish a national ME/CFS tissue bank where biopsy and post-mortem material can be collected and stored was discussed. The MEA is very keen for this plan to move forward in view of some of the interesting abormalities – eg the presence of enteroviral genetic material in one brain sample – that have already been identified. Funding is available from the MEA Ramsay Research Fund if a suitable team (involving both clinicians and pathologists) and an academic centre can be located.
Antiviral drugs The decision by the pharmaceutical company Roche to fund an American study into the use of an antiviral drug called valganciclovir (which is active against some types of herpes virus infection) was discussed. The MEA is following this up by taking steps to see if a parallel trial could be organised here in the UK.
Dr Tony Ward Trustees considered the latest progress report on the research being carried out at Newman College, Birmingham, into the role of counselling for people who have ME/CFS. Preliminary results indicate that while some approaches are helpful, there are other types of counselling which are definitely not helpful.
ME Observatory Charles Shepherd updated trustees on the various strands of epidemiological research that are being carried out by Dr Derek Pheby and his colleagues in three separate research centres.
PRIME Charles Shepherd will be attending the next advisory group meeting of The PRIME Project on Tuesday 20 February. The MEA is helping to fund research associated with the next phase of the PRIME Project.
LITERATURE AND MAGAZINE
Trustees reviewed recent additions to the range of MEA literature. This includes information for Carers, Children and Adolescents (produced in co-operation with Tymes Trust) and the use of Essential Fatty Acids (ie Evening Primrose Oil and EPA supplements). Plans to produce a new (2007) edition of the ‘purple booklet' (ME/CFS/PVFS – An exploration of key clinical isues) were approved.
Gill Briody reported on the benefit questionnaires that were placed in the December issue of ME Essential. There has been a very large response and all the raw data is currently being computerised. The next stage is to summarise the results and produce a report. We shall be discussing the key findings in conjunction with the 25% group, our partners in the project.
ANNUAL MEDICAL MEETING
Trustees discussed a number of possible venues for this year's medical meeting, which is likely to take place in the Autumn. Among the places being considered are Devon, the North East, Peterborough and Bicester. Before making a final decision, trustees would welcome any further suggestions from local groups who would like to be involved in supporting a meeting which is aimed at people with ME rather than health professionals.
NB: The Northern Ireland MEA is holding a full day medical meeting on Saturday April 14th – more information is available on the Diary Dates section of the MEA website.
Trustees discussed the results of questionnaires sent out to a number of local groups that were designed to assess the value of the support and information services we offer. Overall, the results were very favourable, especially in relation to MEA literature.
Neil Riley briefed trustees on work in relation to our Department of Health Section 64 funding for ME Connect. Everything is proceeding well.
ME AWARENESS WEEK
Trustees discussed what the MEA would be doing during ME Awareness Week this year. Given the fact that several very important campaigning issues are already taking up a large amount of time, it was decided to concentrate our Awareness Week initiative on these rather than introducing any further topics. Detailed information on how we propose to do this will appear in the March issue of ME Essential.
LIASON AND MEETINGS WITH OTHER ME/CFS CHARITY REPRESENTATIVES
Neil Riley and Charles Shepherd reported on talks that have taken place with representatives of several other ME/CFS charities (both national and local). These are intended to promote closer co-operation on matters of common interest.
DATE OF NEXT MEETING
This will take place on Tuesday 17th April 2007
NB: This is a summary of the Board meeting – not the official minutes.
EXTRAORDINARY GENERAL MEETING
This took place on Saturday afternoon at the Littlebury Hotel, Bicester. The purpose of the meeting was to discuss and vote on a number of resolutions that have been put before the membership in relation to changes in the Memorandum and Articles of Association, which govern how the charity conducts its business.
In addition to trustees and staff, a number of MEA members were in attendence, including John Brodrick, a former chairman. Etain, Lady Hagart Alexander, an MEA Patron, was also present.
All the resolutions were carried by substantial majorities – voting figures are set out below with those voting against in brackets.
1 342 (4)
2 237 (1)
3 238 (0)
4 235 (2)
5 221 (17)
6 236 (2)
7 227 (11)
8 228 (7)
9 233 (3)
10 229 (4)
11 228 (5)
12 221 (16)
13 235 (3)
14 229 (7)
15 235 (3)
A more detailed account of the EGM will appear in the March issue of ME Essential
ANNUAL GENERAL MEETING
This followed the EGM and included a report from the Chairman (Neil Riley) and Treasurer (Ewan Dale).
A copy of the Chairman's and Treasurer's reports will be placed on the MEA website. An updated financial summary for the year ending December 2005 will appear in the March issue of ME Essential.
The results of voting for election of trustees was announced. All those seeking election were elected. Votes cast in favour are noted below. Votes cast against are noted in brackets.
Barbara Stafford 257 (4)
Ewan Dale 259 (6)
Charles Shepherd 274 (4)
Mark Douglas 247 (9)
There was discussion on a number of topical issues – the Gibson report, NHS Plus guidance, NICE guideline – before the meeting closed at approximately 4pm.
A more detailed summary of the AGM will appear in the March issue of ME Essential.