Summary of ME Association Board of Trustees meetings held on Mon 15 June and Tues 16 June, 2009
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 15 June 2009 and on Tuesday morning 16 June 2009. Informal discussions also took place on a number of issues on the Monday evening.
After the Board meeting on Tuesday the charity’s AGM was held in the afternoon. Results of trustee elections were also announced. A brief summary of the AGM, along with the election results, and a short post-AGM Board meeting, is included at the end of this summary.
Please note that this is a summary of the Board meetings and AGM – 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)
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Rick Osman (RO) – Vice Chairman
ED updated trustees on the current financial situation. Trustees then discussed the monthly accounts for the period up to April 2009. All of our main sources of income are holding steady and in some cases – ie donations and fundraising, literature sales, membership subscriptions – are slightly or significantly up on the same period last year. This is reassuring news given the difficult economic climate and the effect that this is having on the charity sector in general. Income for general funds is continuing to remain roughly in line with expenditure, despite the fall in interest rates on funds held. Trustees made some minor changes to banking arrangements in order to maximise interest rates on the various bank balances.
However, we are now facing a situation whereby people may be 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 increasing. This is especially so 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, we are continuing to encourage donations and fundraising activities in order to maintain our current level of information and support services.
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 heading towards Sao Paulo in Brazil. Ed has now been walking solidly for 446 days and his most recent blog describes receiving treatment for some very nasty bites in the jungle. Ed’s weekly progress can be followed on his Amazon Walk blog at www.walkingtheamazon.com. Ed’s fundraising page for ME research at JustGiving can be found at:
http://www.justgiving.com/walkingtheamazonmeresearch. Almost £5,500 has been raised so far.
‘Just Four Quid’ Appeal Tony Britton reported on the new fundraising campaign which aims to bring in regular small donations for both the Ramsay Research Fund and for ME Research UK (MERUK). More information at:
Mobile phone and ink cartridge returns and trolley coins MD reported on the latest financial returns from these fundraising initiatives. Trolley coins can still be ordered using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the literature order form insert in the May issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. An envelope for the return of ink cartridges was inserted in the May issue of ME Essential magazine. Additional copies can be obtained from Head Office.
Summer raffle GB reported that there had been a steady return of tickets.
Fundraising information BS reported on progress on the new general fundraising leaflet – which is almost ready to go to the printers. A new leaflet describing suggestions for fundraising events is being prepared.
Legacies The importance of people considering making a bequest to the MEA in their Will was discussed. Future action will include a letter and information leaflet on this subject.
A number of other fundraising initiatives were discussed, including the promotion of the two Christmas Cards that we shall be selling later in the year.
2009 AGM AND TRUSTEE ELECTIONS
Trustees finalised the practical arrangements for the AGM on Tuesday afternoon.
As we are still able to increase the number of trustees, 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 and trustees discussed the latest version of the 3,000 word submission from the MEA.
The APPG now has a website: http://www.appgme.org.uk where information regarding Terms of Reference, timetable etc are available. Questionnaires on NHS services for people with ME/CFS can also be downloaded from the APPG website. The deadline for sending in the completed questionnaires is 20 July. The deadline for written submissions is 30 June. The Inquiry intends to hold oral hearings (in public) during mid to late July.
APPG The next meeting of the APPG will take place at 1.30pm (till 3pm) on Wednesday 8 July. Please note that the venue is being changed to Committee Room 19 at the House of Commons. This meeting will include the APPG AGM, which will involve election of officers and finding a replacement for Dr Ian Gibson (Secretary), who has resigned his parliamentary seat. Full details of the agenda, time, venue etc are on the MEA website news archive at: http://www.meassociation.org.uk/content/view/882/161/ and it is advisable to check with the MEA website the day before in case any late changes are made
Countess of Mar’s Group: FORWARD ME CS reported on the Forward ME meeting on 21 April where a very productive discussion on the attitude of nurses towards people with ME/CFS took place. This included a representative from the Royal College of Nursing, and resulted in CS being invited to give a presentation to the RCN Conference in Harrogate.. The date of the next meeting, at which it is planned to have a presentation from a representative of the NHS Services CNCC has not yet been fixed.. The Forward ME website: www.forward-me.org.uk has information about the group and archived minutes from meetings:
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 is being funded by the Ramsay Research Fund. Recruiting of patients is currently taking place and it is intended to start doing the magnetic resonance imaging/MRI studies on muscle energy metabolism over the summer. Further information on this study can be found in the May issue of ME Essential magazine.
Ramsay Research Fund constitution This provides details of how the MEA research fund operates. A copy has now been placed on the MEA website.
ME Observatory Steering Group CS reported on a Steering Group meeting that took place on 8 May. Work on all the various ME Observatory studies is proceeding satisfactorarily with several research papers being prepared or submitted for publication.
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. Two meetings with patients to discuss attitudes, practicalities, ethics etc have taken place and a meeting involving medical experts is planned for July. CS reported on his visit to the MRC brain banks at Edinburgh University where he met Professor James Livingstone (who is heading the new MRC brain bank network) and Dr Colin Smith. A brief report on this meeting can be found on the MEA website at: http://www.meassociation.org.uk/content/view/883/161/ . 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 (shortly) on the MEA website. Trustees also discussed the post-mortem research examinations that we are currently involved with.
Manchester Metropolitan University study into public perception of ME Trustees discussed the results from this study and how to make best use of the recommendations.
Medical Research Council (MRC) Expert Group on ME/CFS Research CS reported on the 30 March meeting of this MRC group, which has been set up by Professor Stephen Holgate (University of Southampton). CS and Sir Peter Spencer (AfME) raised the issue of post-mortem research. Plans for an MRC conference on ME/CFS research in November were taken forward. A summary of this MRC meeting can be found in the May issue of ME Essential.
Applications in relation to treatment Trustees previously discussed an overseas application relating to further work on an immunological treatment that has shown some promise in preliminary studies and a UK proposal relating to treatment of Epstein Barr Virus infection.
Diagnostic tests Trustees discussed two new diagnostic tests that are only available from the private sector – the mitochondrial function test and the hydrogen sulphide test that recently attracted a great deal of press publicity. The possibility of the RRF funding independent studies to validate these tests was discussed.
An MEA statement on the hydrogen sulphide urine test can be found on the MEA website: http://www.meassociation.org.uk/content/view/875/193/
Association of Medical Research Charities (AMRC) BS reported on a meeting at the AMRC that had discussed the current situation regarding fundraising for medical research.
Invest in ME Conference CS and TB reported on this conference, which placed considerable emphasis on the severely affected and how ME/CFS is managed from an overseas perspective. A detailed report on the conference will appear in the August issue of ME Essential.
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 Board meeting in March, the timescale for both projects has had to be re-organised. The current situation is that the final draft of the Scottish Good Practice Statement (SGPS) for GPs has been sent to medical stakeholders for final comment. It will be made available to health professionals on-line fairly soon. The SGPS was officially launched at a Scottish Parliament reception during ME Awareness Week on 14 May. Following publication, it is hoped to promote the document by initiating GP training sessions and developing modified versions for allied health professionals and for specialists. 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 on Wednesday 9 September in Glasgow at which the SGPS will be introduced to health professionals through presentations and workshops.
NICE GUIDELINE ON ME/CFS
Trustees briefly discussed the situation regarding the NICE guideline on ME/CFS and the fact that the Countess of Mar had asked a written question in the House of Lords about the review procedure, which is due to take place in 2010.
MEA ANNUAL MEDICAL MEETING
Trustees discussed arrangements for the 2009 Annual Medical Meeting. We are now 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 will appear on the MEA website and in the August issue of ME Essential magazine.
OTHER ME/CFS MEETINGS
Royal Society of Medicine CS updated trustees on arrangements, including a change of speaker in the programme, for the patient meeting in the ‘Medicine and ME’ series that will be held at the Royal Society of Medicine on Saturday 11 July. The May issue of ME Essential contains information about the programme, speakers, and details on how to apply for a ticket to attend.
UCL meeting in September CS agreed to discuss the inclusion of the Lightning Process at this meeting with representatives of other charities involved with the FORWARD ME Group.
BENEFITS AND ESA
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 (small in number but all problematic so far) on this new work-related benefit is now starting to come in and we are keen to hear from anyone else who is trying to claim ESA.
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. The first summary of the results appeared in the February issue of ME Essential magazine. A further summary covering symptomatic relief and what people want from NHS services is planned to appear in the August issue. Work has now started 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. All of the relevant patient feedback, in the form of a preliminary summary/report, will be passed to the APPG Inquiry into NHS Services.
A new MEA information leaflet on the work of the Ramsay Research Fund is now available at no charge. This will shortly be available to download from the website as well.
A new information leaflet on Muscle Energy Supplements – carnitine, creatine, Co-enzyme Q10 etc – is being prepared for the August issue of ME Essential magazine. The need for new literature covering ESA, and how to fill in the ESA application form, was discussed.
MEA literature can be obtained using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the 8-page order form insert in the May issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
Trustees agreed to highlight the fact that in addition to the MEA being a patient support and information charity, we also play a key role in funding medical research through the Ramsay Research Fund. A new section covering the work of the RRF (past and present) and our plans to set up a brain and tissue bank will soon appear on the MEA website.
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).. The current (June) question relates to heat intolerance and ME/CFS. Results from all the previous on-line surveys can be found on the MEA website.
As a result of changes and guidance relating to the use of 0870 telephone numbers trustees discussed a number of options. NR updated trustees on finances for volunteer training programmes.
ME Connect, our telephone information and support service, operates every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm. Tel: 0870 444 1836.
ME ESSENTIAL MAGAZINE
TB reported on preliminary plans for the August issue of ME Essential. This will include 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. Copy for the August issue must be with TB by 1 July.
DATE OF NEXT MEETING
Monday 7 September and Tuesday 8 September 2009
This took place at 2pm on Tuesday 16 June.
Attendance: 5 trustees + Company Secretary + 2 MEA members
Items on the Agenda included:
- Chairman’s report
- Financial report
- Appointment of auditors
A full report on the AGM, including a copy of the Chairman’s report, and a summary of the Financial Report, will appear in the August issue of ME Essential magazine.
RESULT OF TRUSTEE ELECTIONS
Votes cast: 320
In favour 315
Votes cast: 320
In favour 307
Both candidates were elected
BOARD OF TRUSTEES MEETING FOLLOWING THE AGM
Neil Riley was elected as Chairman for the coming year
Ba Stafford was elected as Vice Chairman
Ewan Dale was elected as Hon Treasurer
Gill Briody was elected as Company Secretary