This is a short summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 27 January 2009. Informal discussions also took place on a number of issues the night before.
Please note that this is a summary of the Board meeting – not the official minutes. The order of subjects below is not necessarily in the order that they were discussed.
Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Mark Douglas (MD)
Rick Osman (RO) – Vice Chairman
Ba Stafford (BS)
ED reported that overall income from subscriptions, donations, gift aid and general fundraising for the year ending December 2008 has been roughly in line with expenditure, which included some significant additional items due to the Head Office move at the beginning of 2008. This is very encouraging given the major economic problems that started to emerge during the latter part of 2008. However, like all charities, we are now facing a situation where people may be reducing the amount of money they are able or willing to give to the charity sector. And at the same time demand on our support and information services may well start to increase. Trustees agreed to continue to maintain a very tight control over expenditure and to secure the best rates of interest on money held in our unrestricted and restricted (ie research fund) reserve accounts – where there is going to be a significant fall in income as a result of the base rate cuts.
The annual stocktaking of literature and goods for sale has been successfully completed.
Amazon Walk to raise funds for a tissue and post-mortem bank: BS had sent in an email report on Ed Stafford’s progress on the Amazon Walk. Ed’s most recent blog posting comes from Milagos, Peru. He will shortly be collecting his visa for entry into Brazil – which makes about 3,000 km to go as the crow flies!. Progress can be followed on the Amazon Walk blog at www.walkingtheamazon.com. Ed’s fundraising page for ME research at JustGiving can be found at: www.justgiving.com/walkingtheamazonmeresearch. Just over £5,000 has been raised so far.
Mobile phone and ink cartridge returns and trolley coins: Trolley coins can still be ordered using the pdf ORDER FORM on the MEA website, or the insert in the February issue of ME Essential magazine, or by phoning MEA Head Office: 01280 818964/818968.
Fundraising information: TB produced a draft layout for our new fundraising information leaflet.
A number of other fundraising initiatives were discussed, including a decision to once again sell Christmas Cards in 2009. A number of possible designs were considered.
2009 AGM AND TRUSTEE ELECTIONS
Trustees agreed to a timetable for the 2009 AGM and trustee elections. The AGM will take place at Head Office in late June or early July. Trustees standing for election this year are Mark Douglas and Barbara Stafford. Further information on the AGM and trustee elections will appear in the February issue of ME Essential magazine.
We are very keen to hear from anyone who would like to discuss the possibility of joining the MEA as a 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.
NICE JUDICIAL REVIEW
CS updated trustees on administrative arrangements for the NICE judicial review. The two-day Hearing will take place in the High Court in London on 11 and 12 February 2009. A representative from the MEA will attend the Hearing. More information, as it comes in, will appear on MEA website in the NEWS SECTION.
APPG Inquiry into NHS Services: CS reported on progress with the Inquiry that has been initiated by Dr Des Turner, Chairman of the APPG. Further information will appear on the MEA website news section as it becomes available.
APPG: The next meeting of the All-Party Parliamentary Group on ME is intended to take place in February and it is hoped that there will be a presentation from Jonathan Shaw, Minister for Disabled People. As soon as a date becomes available, it will appear on the MEA website news section. The minutes of the 8 October 2008 meeting can be found on the MEA website (December news archive).
Countess of Mar’s Group: FORWARD ME CS reported on the second meeting of this group that took place at the House of Lords on Tuesday 18 November. A website has been set up where information about the group and minutes from meetings are available. A summary of the November meeting will appear in the February issue of ME Essential magazine. Forward ME website.
Ramsay Research Fund (RRF) funding for Professor Julia Newton et al, University of Newcastle: CS updated trustees on the new research study into muscle function in ME/CFS that was approved at the last Board meeting in November. Further information about this study can be found at the end of this summary.
ME Observatory Steering Group: CS reported that the next Steering Group meeting will take place on Tuesday February 3.
Post-mortem tissue bank feasibility study: CS reported that the next meeting of the Steering Group overseeing this new item of research that will be examining various aspects of how an ME/CFS specific tissue/post-mortem bank could be set up will take place on February 3. CS will also be having a separate meeting with the researchers on Monday February 2. It was agreed that CS should visit one of the existing post-mortem/tissue banks in the UK to take this preparation forward.
Medical Research Council (MRC) Expert Group on ME/CFS Research: CS updated trustees on the current situation regarding this group, which has been set up by Professor Stephen Holgate, and reported on the first meeting of the group that was held in London on December 15 The MEA gave a presentation on the role of the charity sector in initiating and funding research. A summary of this meeting will appear in the February issue of ME Essential magazine. A further meeting is being planned for March.
Ramsay Research Fund constitution: Trustees agreed to start work on a new constitution for the Ramsay Research Fund which will be more relevant to the current situation regarding ME/CFS research.
Application for funding in relation to post-mortem research: Trustees discussed a new funding proposal that is awaiting ethical approval.
Other applications for research funding: CS updated trustees on several other preliminary applications for research funding that have been received.
Practice nurses’ attitudes to cause and management of ME/CFS: Trustees discussed the results of this recently published research paper, which indicates a very poor understanding of the pathological factors that may be involved in the causation of ME/CFS. Some of the nurses who were interviewed also displayed very negative or prejudicial views about people with ME/CFS. CS has written to members of the FORWARD ME Group to ask for a discussion on nurse education to be placed on the Agenda for the next meeting. The MEA has approached the Royal College of Nursing about ME/CFS education in the past and the results of this study indicate that we need to do so again. The full paper can be accessed via the news section (January 2009 archive) of the MEA website.
SCOTTISH CLINICAL GUIDELINES
ED reported on the current state of progress relating to the development of clinical guidance for doctors in Scotland – a document that is partly being based on the content of the MEA purple booklet for health professionals: ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues" – and the Public Health Needs Assessment. The timescale for both projects has had to be re-organised with redrafted documents relating to both initiatives coming out in February for further stakeholder consultation. The aim is to achieve publication during ME Awareness Week in May.
TB reported on a meeting he had attended on January 20 of the NHS Direct Access Issues Group at NHS Direct HQ, where the possibility of MEA involvement in future work on chronic and long-term conditions was mentioned. TB has been invited to give a presentation to the group at their next meeting in April. We are also working with NHS Choices on a video about ME/CFS.
MEA ANNUAL MEDICAL MEETING
Trustees discussed arrangements for the 2009 Annual Medical Meeting. CS is going to contact local groups to see if anyone would like to co-operate with us in the way that the Colchester Group did for the 2008 meeting.
OTHER ME/CFS MEETINGS
Royal Society of Medicine: CS reported on arrangements for the patient meeting in the ‘Medicine and ME’ series that will be held at the Royal Society of Medicine on Saturday July 11. More information on this meeting, including how to apply to attend, can be found in the February issue of ME Essential magazine.
Invest in ME Conference: Trustees agreed to both TB and CS attending this conference in May. We are also going to ask the organisers if the MEA can have a display stand at the conference.
MEA MANAGEMENT QUESTIONNAIRE
TB updated trustees 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 public opinion about management issues that has ever been undertaken here in the UK, possibly in the world. A comprehensive summary of the results will appear in the February issue of ME Essential magazine and it was agreed to start work on the preparation of a more substantial report which summarises and comments on the results. All of the relevant patient feedback will be passed to the APPG Inquiry into NHS Services.
A new information leaflet on PHI/permanent health insurance will shortly be made available.
MEA literature can be obtained using the pdf ORDER FORM on the MEA website or the 8-page Order Form insert in the February issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
The new regular on-line survey feature has proved to be very popular. So far, we have surveyed public opinion on reactions to flu vaccination (November); the NICE guideline on ME/CFS (December) and post-mortem research (February). Trustees considered various options for future questions. The February survey will be allow people to comment on how satisfied they are with the NHS management of their ME/CFS. Results from current and past on-line surveys can be found on the MEA website.
It was agreed to update the section on alternative and complementary therapies.
Trustees discussed whether ME Connect Helpline could also be linked in to NHS services and given publicity by the ME/CFS clinics.
ME ESSENTIAL MAGAZINE
TB reported on the content of the February issue of ME Essential. This will be sent out to members towards the end of the month. It was agreed to produce a survey form for people to comment on the content of the magazine – in particular the not always easy task of achieving the right balance between serious news and medical information and ‘lighter’ human interest features.
DATE OF NEXT MEETING
Provisionally fixed for Tuesday 17 March 2009
Summary prepared by Dr Charles Shepherd, MEA trustee
Further information on new MEA funded research into muscle energy metabolism:
Professor Julia Newton and colleagues at the University of Newcastle have been investigating the role of autonomic system dysfunction in ME/CFS and several papers from her research group relating to these findings have now been published. Professor Newton has also been looking at possible explanations for the sometimes quite disabling fatigue that is reported by people with primary biliary cirrhosis. The main emphasis of the new study being funded by the ME Association’s Ramsay Research Fund will be to look at whether there is a peripheral (ie muscular) component to exercise-induced fatigue in ME/CFS by examining how skeletal muscle produces lactic acid during exercise and then removes the acid during the recovery phase. The proposed study will take forward findings from small studies that have already examined this aspect of muscle function. Some of these studies indicate that there is a defect in muscle energy metabolism/production, possibly due to mitochondrial dysfunction, that cannot be explained by the deconditioning/inactivity model – at least in a sub-group of people with ME/CFS.