This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon, September 7th 2009 and on Tuesday morning, September 8th 2009. Informal discussions also took place on a number of issues on the Monday evening. Part of the Editorial team for the magazine discussed the content for the November issue on Tuesday afternoon.
Please note that this is a summary of the Board meetings – not the official minutes. The order of subjects below is not necessarily in the order that they were discussed.
Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Rick Osman (RO)
ED updated trustees on the current financial situation. Trustees then discussed the monthly accounts for the period up to the end of July 2009. Income for general funds continues to remain roughly in line with expenditure for the first seven months of the year – although the interest rate on our main reserve fund is protected from the full impact of the collapse in rates until November 2009. So we appear to have deferred the worst effects of the recession – at least for now. Trustees made some further minor changes to banking arrangements in order to maximise interest rates on the various bank balances.
The MEA is now facing a general situation whereby people are reducing the amount of money they are able or willing to give to the charity sector. At the same time, demand on our support and information services is steadily increasing, especially in relation to benefit and employment information now that the government's welfare/benefit reforms and the introduction of the ESA are starting to take effect. Consequently, trustees and staff are continuing to devote a significant part of their time to fundraising activities in order to maintain our current level of information and support services.
2010 London Marathon The MEA has paid for and secured two guaranteed places for experienced runners in the 2010 London Marathon – but we clearly need two good runners who can confidently guarantee to complete the run and also bring in a substantial amount of sponsorship money. If you think you can help please get in touch with Tony Britton. More information can be found in the MEA website announcement.
Fundraising event at BGC Partners in London The MEA has been asked to take part in a major charity fundraising event that is being organised by BGC Partners in London on Friday September 11th. BGC is a global financial services company and each year this charity event is held in memory of colleagues who died in the Twin Towers in New York on September 11th 2001. All of the revenue generated from the day's trading at BGC is donated to the various charities taking part. More information on the 5th Annual BGC Charity Day can be found at the BGC website. There is an MEA press release on the event.
Amazon Walk to raise funds for a tissue and post-mortem tissue/brain bank: BS reported on Ed Stafford's latest progress on his Amazon Walk – where he is now carrying a 35kg pack with the sole company of his guide Cho – because nobody else will accompany them through the very difficult swampy terrain in the Riozinho area of Brazil. Ed has been walking solidly for just over 530 days and his most recent blog describes life in this part of the Amazon basin. Ed's weekly progress can be followed on his Amazon Walk blog.
Ed has a fundraising page for MEA research at JustGiving. Around £5,500 has been raised so far. Christmas cards and notelets featuring the expedition will soon be going on sale. Profits will be split between all the charities involved.
‘Just Four Quid' Appeal Tony Britton reported on the new 2009 fundraising campaign which aims to bring in regular small donations for both the Ramsay Research Fund and for ME Research UK (MERUK). Total funds raised so far for both charities amount to almost £5000. More information can be found here.
Eric Smart's Sponsored Cycle ride from Aberdeen to Australia TB reported that Eric Smart has decided to extend his cycle ride to include New Zealand and the USA. At present, he is cycling along the Stuart Highway in Australia from Alice Springs to his original destination of Adelaide, and hopes to complete this leg of his epic ride in the next few weeks. Eric has set himself a target to raise £12,000 for The ME Association. Click if you would like to sponsor him.
Summer raffle GB reported that there had been a steady return of tickets and the draw will take place on September 25th. Tickets will also be available at the ME Question Time event in Chichester. Winning numbers will be announced on the MEA website and in the November issue of ME Essential.
Christmas cards These are now available – two separate packs of ten, priced at £3.50 per pack – and can be ordered using the literature order form insert in the magazine. The initial response from members has been good and a considerable number of packs have already being sent out.
Website shopping We are going to highlight the facility – easyfundraising – on the MEA website home page that provides a direct link to well known shops and stores. Purchasing goods on-line from companies such as John Lewis via the MEA website means that we receive a commission from the shop at no charge whatsoever to the purchaser.
Mobile phone and ink cartridge returns, trolley coins and computer mouse mats MD reported on financial returns from these on-going fundraising initiatives. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website, or the literature order form insert in the August issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. Envelopes for the return of ink cartridges can be ordered using the literature order form insert in the August issue of ME Essential magazine. A mobile phone return envelope will again be inserted in November MEE.
Fundraising information Two new fundraising leaflets have been produced by BS and the fundraising sub-group – one of which was sent out in August ME Essential. A new leaflet describing suggestions for fundraising events is almost ready to go to the printers.
Legacies The importance of people considering making a bequest to the MEA in their Will was discussed. Future action will include an information leaflet plus a Will Codicil that is being prepared by BS and the fundraising sub-group. This will be inserted in the November issue of ME Essential.
A number of other fundraising initiatives were discussed, including an additional item of merchandise – an MEA ‘magic mug'.
BOARD OF TRUSTEES – CO-OPTED TRUSTEES
Following the trustee elections in June we are still able to increase the number of trustees – so we are keen to hear from anyone who would like to discuss the possibility of joining the MEA as a co-opted trustee. Applications are welcome from people with ME, carers, and anyone who has skills which they feel could be of benefit to the charity. In order to proceed with an application, non members would have to become members of the MEA.
APPG Inquiry into NHS Services CS reported on the progress of the Inquiry now that the oral hearings and written evidence gathering process has ended. The APPG website contains information regarding Terms of Reference, timetable etc. A date for publication of the findings has not yet been announced.
APPG CS reported that the date of the next meeting of the APPG has still to be arranged but we are hoping that a minister from the DWP will be able to attend to discuss various current concerns relating to benefits – ESA in particular. Full details of the agenda, time, venue etc will appear on the MEA website as soon as they become available. It is advisable to check with the MEA website the day before APPG meetings in case any late changes are made
Countess of Mar's Group: FORWARD ME CS reported that a date and topic for the next meeting has not yet been arranged. The Forward ME website has information about the group and archives of minutes from past meetings:
Ramsay Research Fund (RRF) TB reported that a new section on the work of the RRF has now been added to the MEA website via a home page link.
RRF: Professor Julia Newton et al, University of Newcastle CS updated trustees on the new research study into muscle function and metabolism in ME/CFS that is being funded by the Ramsay Research Fund. Work involving the magnetic resonance imaging/MRI studies on muscle energy metabolism was due to take place over the summer. Further information on this study can be found in the August issue of ME Essential magazine..
RRF: Gene expression research Results from a study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, has now been published in the open access journal, BMC Medical Genomics. Details can be found on the MEA website here.
RRF: Post-mortem tissue bank feasibility study CS reported on a further meeting of the Feasibility Steering Group that is examining various aspects of how an ME/CFS specific tissue/post-mortem bank could be set up. The RRF will be co-funding the second part of the feasibility study – which will start in October 2009 – at an overall cost of around £28,000. An article summarising all the various post-mortem research initiatives that are taking place can be found in the May issue of ME Essential and on the research section of the MEA website. Trustees also discussed the various post-mortem research examinations that we are currently involved with and a presentation on these findings that is due to take place at an international neurology meeting in October..
ME Observatory Steering Group CS reported on a Steering Group meeting that took place on 23 July. Work on all the various ME Observatory studies is proceeding to plan with several research papers being prepared or submitted for publication. The next ME Observatory meeting will take place on 30 October.
Medical Research Council (MRC) Expert Group on ME/CFS Research CS reported that the group will next meet when the two day research workshop is held on 19 and 20 November. More details on this meeting can be found in the August edition of ME Essential.
Diagnostic tests Trustees held further discussions on the two new diagnostic tests that are only available from the private sector – the mitochondrial function test and the hydrogen sulphide test. The possibility of the RRF funding an independent study to validate the results obtained so far from one of these tests is currently being discussed with a research group. An MEA statement on the hydrogen sulphide urine test can be found on the MEA website.
Immunological treatments CS reported on discussions he has been having with Professor Lars Lagerstrand at the Karolinska Institute in Sweden regarding further research into staphylococcal vaccine – an immunological treatment that has been successfully used to treat people with ME/CFS in Sweden. More information can be found on the MEA website.
Association of Medical Research Charities (AMRC) Trustees discussed the pros and cons of submitting an application to join this organisation in 2010.
Medical Advisory Panel At present, the MEA makes use of its Honorary Medical Advisers and an extensive list of other clinical and research experts when we require further advice on a specific clinical or research topic. Trustees discussed the pros and cons of having a more formal Medical Advisory Panel with Terms of Reference etc. It was decided to maintain the current position.
ED and CS reported on progress relating to (a) publication of clinical guidance on ME/CFS for doctors in Scotland – a document partly based on the MEA purple booklet for health professionals ( ‘ME/CFS/PVFS: An Exploration of the Key Clinical Issues) and (b) the Scottish Public Health Network Needs Assessment. As noted at the MEA Board meeting in June, the timescale for both projects has had to be re-organised and therefore delayed.
The current situation is that a further draft of the Scottish Good Practice Statement (SGPS) for GPs has been sent to medical stakeholders for further comment, which has now been received. The current version of the SGPS was officially launched at a Scottish Parliament reception during ME Awareness Week on 14 May. The current intention is to publish the Needs Assessment in the autumn.
ED and CS are both involved in a planning group that is making arrangements for a full day medical conference that was originally intended to take place on Wednesday 9 September in Glasgow at which the SGPS was to be introduced to health professionals. This launch has now had to be postponed – partly due to the additional workload imposed on GPs as a result of the swine flu pandemic. A revised date for this conference will appear on the MEA website as soon as we have it.
MEA ANNUAL MEDICAL MEETING: ‘ME QUESTION TIME' IN SUSSEX ON SATURDAY 19 SEPTEMBER
Trustees discussed final arrangements for the 2009 Annual Medical Meeting. We are holding this year's meeting in conjunction with the Sussex based charity ReMEmber. The meeting will again be in the form of an ‘ME Question Time' and will take place at Chichester Hospital on the afternoon of Saturday 19 September. Further details, including membership of the medical panel, can be found on the MEA website and in the August issue of ME Essential magazine.
OTHER ME/CFS MEETINGS
Royal Society of Medicine CS reported on what was generally felt to be a successful patient meeting in the ‘Medicine and ME' series that was be held at the Royal Society of Medicine on Saturday 11 July. A report on this meeting will appear in the November issue of ME Essential.
University College, London meeting in September CS arranged for a discussion on the inclusion of the Lightning Process at this UCL meeting with representatives of other charities involved with the FORWARD ME Group at their last meeting in July. As a result an approach is going to be made to the organisers..
BENEFITS, ESA AND GREEN PAPER ON WELFARE REFORM
Trustees discussed the current situation regarding the government's proposals on welfare reform and the need to monitor people's experiences when claiming ESA. Feedback on this new work-related benefit is now starting to come in – almost all of which is indicating that people with ME/CFS are finding it very difficult, or almost impossible, to obtain ESA. We are keen to hear from anyone else who is trying to claim ESA.
Trustees discussed the most recent Green Paper proposals for welfare reform (‘Shaping the Future for Care Together'), including the possible transfer of Attendance Allowance to Social Services. We are also very concerned that this proposal could be extended to include Disability Living Allowance. MEA trustees agreed to oppose any such proposal and a more detailed response to the Green Paper will be prepared. NR will be leading the Green Paper assessment as part of our preparation for an MEA response. In addition, The MEA would like to hear the views of our members on the Government's proposed changes to social care services, as this will help us to respond more effectively to the consultation process. Consultation on the Green Paper closes on 13th November 2009.
MEA MANAGEMENT QUESTIONNAIRE
Trustees were updated on the analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of patient and carer opinion about management issues that has ever been undertaken here in the UK, possibly in the world. Work on the detailed statistical analysis of the results, which will provide the basis for the preparation of a more substantial report that summarises and comments on the results, is proceeding well. All the relevant patient feedback, in the form of a preliminary summary/report, has been passed to the APPG Inquiry into NHS Services. The intention is to make all this material available, plus any necessary comment, in the form of a report that can be given to health professionals, administrators etc. We are hoping that this will be ready for publication in 2010.
New MEA information leaflets on Employment and Support Allowance (ESA) and Cognitive Dysfunction are currently being prepared.
A new information leaflet on Muscle Energy Supplements – carnitine, creatine, Co-enzyme Q10, NADH etc – appeared in the August issue of ME Essential magazine.
The 2009 updated version of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues' is being prepared and this should be available in October.
MEA literature can be obtained using the pdf ORDER FORM on the MEA website, or the 8 page order form insert in the August issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
Trustees agreed to make a number of changes and additions to the website, including highlighting the fact that you can shop on-line at many well known shops and the MEA receives a small commission in return.
The regular on-line survey feature remains very popular. Topics surveyed so far include public opinion on reactions to flu vaccination (November); the NICE guideline on ME/CFS (December); attitudes to post-mortem research (February); GP skills and knowledge (March); how much people have spent on services/treatments outside the NHS (May), Probiotics (August). The current (September) question relates to the attitude of doctors who carry out medical examinations and assessments for DWP benefit application purposes. Results from all the previous on-line surveys can be found on the MEA website.
New contact numbers As a result of changes and guidance from OFCOM relating to the use of 0870 telephone numbers trustees agreed at their June meeting to change the ME Connect contact number to an 0844 number. These 0844 numbers are endorsed by the Telephone Helplines Association. GB reported that the changeover has gone smoothly.
ME Connect, our telephone information and support service, operates every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm. Tel: 0844 576 5326. We are always interested in hearing from anyone who would like to become involved with this service as a volunteer.
ME ESSENTIAL MAGAZINE
TB reported on preliminary plans for the November issue of ME Essential. This will include an article on the gene expression research that has been funded by the Ramsay Research Fund, and which has now been published in BMC Genomics. A more detailed discussion took place with the Editorial Board on Tuesday afternoon. Copy for the November issue must be with TB by the beginning of October.
Trustees discussed whether there should be a more prominent warning about our policy regarding adverts in the magazine that refer to or are used to promote treatments, clinics and practitioners. Our current policy is that we believe that this information should be available to people and make it clear that publication of an advert does not imply endorsement or recommendation by the MEA. Trustees would welcome any feedback from members on this issue.
MEA HEAD OFFICE
Volunteers In addition to the telephone volunteers who deal with ME Connect enquiries, we have a small number of regular volunteers who come into the MEA office in Buckingham on a regular basis to help with various aspects of our work. The contribution made by Ann, Donald, John, Lydia and Pam is very much appreciated and will be covered in the November issue of ME Essential. If you know of anyone who lives locally to Buckingham, and would like to come into the office and help out occasionally please get in touch with Gill Briody. The MEA office is modern, on the ground floor of an out-of-town site, and has good car parking facilities.
Raising the profile of the MEA in Buckingham Trustees agreed on a number of ways in which we could help to raise the local profile of the MEA, with the intention of bringing in offers of help and financial support from members of local community.
DATE OF NEXT BOARD MEETING
Monday 9th and Tuesday 10th November 2009