This is a 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 17 March 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
Mark Douglas (MD)
Neil Riley (NR) – Chairman (by telephone link)
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 financial situation, including a discussion on the final monthly accounts for the year ending December 2008. Despite the very difficult economic climate for charities it was encouraging to note that income from subscriptions, gift aid, advertising, literature sales and general fundraising for 2008 was slightly up on 2007. Income for general funds was also roughly in line with expenditure.
However, like all charities we are now facing a situation where people are likely to 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, and may well see a further significant increase once the government’s new welfare/benefit reforms start to take effect.
Trustees and staff agreed to continue to maintain very tight control over expenditure and to pursue the best rates of interest on money held in our reserve accounts – where there has been a very dramatic fall in income as a result of the base rate cuts over the past few months.
Amazon Walk to raise funds for a tissue and post-mortem tissue bank: BS reported on Ed Stafford’s progress on the Amazon Walk. Ed’s most recent blog posting brings news that after walking 11 months and 13 days he and his guide have now left Peru and crossed the border into Columbia. Ed’s progress can be followed on his Amazon Walk blog at http://www.walkingtheamazon.com. Ed’s fundraising page for ME research at JustGiving can be found at: http://www.justgiving.com/walkingtheamazonmeresearch . Over £5,100 has been raised so far.
Mobile phone and ink cartridge returns and trolley coins MD reported on these three successful fundraising initiatives. Trolley coins can still be ordered using the pdf ORDER FORM on the MEA website (www.meassociation.org.uk) or the insert in the February issue of ME Essential magazine, or by phoning MEA Head Office: 01280 818964/818968. An envelope for the return of ink cartridges will again appear in the May issue of ME Essential magazine.
Summer raffle Trustees discussed the prize structure for the summer raffle – one of our most successful fundraising initiatives.
Fundraising information TB reported on the final layout for our new membership information leaflet, which is now at the printers, and informed trustees about progress on the new fundraising leaflet.
Legacies The importance of people considering making a bequest to the MEA in their Will was discussed. Trustees decided to produce a letter that will be inserted in the May or October issue of ME Essential.
A number of other fundraising initiatives were discussed, including a decision on the design of two Christmas Cards we shall be selling later in the year.
2009 AGM AND TRUSTEE ELECTIONS
Trustees finalised the timetable for the 2009 AGM and trustee elections. The AGM will take place at MEA Head Office in Buckingham on the afternoon Tuesday 16 June 2009. Trustees standing for election this year are Mark Douglas and Barbara Stafford. Further information on the AGM, along with biographical details about those standing for election will appear in the May issue of ME Essential magazine.
We are still very keen to hear from anyone who would like to discuss the possibility of joining the MEA as a trustee, and in view of the delay at the printers in sending out the February issue of ME Essential, the deadline for receiving applications has been extended to Monday 30 March. 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 reported on what had happened at the High Court during the NICE judicial review back in February and the judgement in favour of NICE that had been made last Friday. The MEA press statement on the judgement can be found on the MEA website at: http://www.meassociation.org.uk/content/view/814/161/ Trustees placed on record a note of thanks to Douglas Fraser and Kevin Short for taking this case to the High Court, along with their disappointment with the outcome. Trustees went on to discuss how the MEA, along with other ME charities and organisations could continue to campaign for an NHS management programme that was not dominated by cognitive behaviour therapy (CBT) and graded exercise therapy (GET). We shall be talking to our colleagues in the other ME charities about this over the coming weeks.
ME/CFS AND THE INSURANCE INDUSTRY
One of the issues raised in the High Court during the NICE Judicial Review was the attitude of insurance companies – Liverpool Victoria and Exeter Friendly in particular – towards claims from people with ME/CFS. The barrister for NICE stated quite clearly that these two insurance companies do recognise ME/CFS. However, the MEA is aware of a growing number of cases where people with ME/CFS are experiencing great difficulty with their claims for permanent health insurance/income protection policies. CS reported that a meeting with the Association of British Insurers (ABI) had therefore been arranged for 8 April to discuss our concerns. CS has also discussed with the Countess of Mar some very disturbing conclusions relating to ME/CFS that have appeared on an insurance website, where the author has used the NICE guideline to conclude that ME/CFS is a psychiatric condition rather than a physical one and as a result ‘…private health insurance companies are within their rights to refuse cover if a policy does not include psychiatric cover’.
Follow up note: After the MEA brought this matter to the attention of the Countess of Mar it was raised during a health debate that took place in the House of Lords on Wednesday 18 March. More details can be found at:
APPG Inquiry into NHS Services CS reported on an APPG Secretariat meeting with Dr Des Turner MP on 10 March to discuss progress with the Inquiry. The issue of Minute taking at APPG meetings was also briefly raised at this meeting. Further information on the APPG Inquiry into patient services will appear on the MEA website following the next APPG meeting on 1 April.
APPG The next meeting of the APPG will take place on Wednesday 1 April. The Agenda has now been finalised and the main item will be a presentation and discussion on the NHS Services Inquiry. Full details of the agenda, time, venue etc are on the MEA website news archive at: http://www.meassociation.org.uk/822/161/
Countess of Mar’s Group: FORWARD ME Following publication of a paper* that indicates a very poor level of knowledge about ME by some practice nurses, CS reported that the next Forward ME meeting is intending to discuss the attitude of nurses towards people with ME/CFS. We are intending to include a representative from the Royal College of Nursing and the MEA is organising this at present. The next meeting will take place on 21 April at the House of Lords. A website has been set up where information about the group and minutes from meetings are available: www.forward-me.org.uk
[*Practice nurses’ attitudes to cause and management of ME/CFS. The results contained in this recently published research paper indicates a very poor level of understanding about 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. The full paper can be accessed via the news section – January 2009 archive- of the MEA 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 Board meeting in November 2008. Professor Newton is currently recruiting people for the study. Further information about this study can be found at the end of this summary.
ME Observatory Steering Group CS reported on the most recent Steering Group meeting that took place on 26 February. Work on all the various studies is proceeding satisfactorarily and TB will be attending an ME Observatory Workshop at the University of East Anglia on 3 April.
Post-mortem tissue bank feasibility study CS reported on a meeting of the Feasibility Steering Group that is overseeing this new research project that will be examining various aspects of how an ME/CFS specific tissue/post-mortem bank could be set up. CS also had a separate meeting with the research group involved on Monday 2 February at the London School of Hygiene and Tropical Medicine.. It was agreed by trustees in January that CS should visit one of the existing post-mortem/tissue banks in the UK to take this preparation forward – a date for this meeting has not yet been arranged. An article summarising all the various post-mortem research initiatives is being prepared for the May issue of ME Essential.
Manchester Metropolitan University study into public perception of ME Trustees discussed the preliminary results from this study. TB will be meeting those involved to discuss the results in more detail, and what we might do with them.
Medical Research Council (MRC) Expert Group on ME/CFS Research CS reported that the next meeting of this MRC group, which has been set up by Professor Stephen Holgate, will take place on Monday 30 March. CS and Sir Peter Spencer are both intending to raise the issue of post-mortem research at this meeting.
Ramsay Research Fund constitution Trustees signed off a new constitution for the Ramsay Research Fund. This document is more relevant to the current situation regarding ME/CFS research. Copies can be obtained from the MEA and this information will be placed on the MEA website in due course. CS agreed to update the MEA information leaflet that covers the work of the RRF.
Application for funding in relation to post-mortem research Trustees held a further short discussion on a new funding proposal that is awaiting ethical approval.
Other applications for research funding Trustees discussed the possibility of making approaches to a number of researchers to see what their current research funding requirements are.
ED reported on the latest progress relating to the development of clinical guidance 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 also on the Scottish Public Health Network Needs Assessment. As noted at the Board meeting in January, the timescale for both projects has had to be re-organised. The current situation is that the 4th draft of the Scottish Good Practice Statement for GPs has been sent to stakeholders (including CS) but there is a further delay in the preparation of the Needs Assessment. The SPGS programme is to finalise the document by the end of April. The final SGPS is to be reviewed at a Cross Party Group (CPG) on ME meeting on May 6 with the publication launch programmed for ME Awareness Week in 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 Needs Assessment will be published in late summer/early autumn.
ED reported that SGPS author Dr Gregor Purdie will be attending the CPG in Edinburgh on Wednesday 18 March and then meeting the Head of the Scottish Public Health Network. on Friday 20 March. The CPG meeting on Wednesday will include a presentation from Dr Abhijit Chaudhuri on post-mortem research. Dr Nigel Speight will be addressing the CPG on May 27th. The Scottish Chief Scientist has been invited to attend the September meeting.
TB reported on a presentation to the group that he will be giving at their next meeting on 13 April. We have also been working with NHS Choices on the preparation of a video about diagnosis and management of ME/CFS but this has not yet been added to the NHS Choices website..
MEA ANNUAL MEDICAL MEETING
Trustees discussed arrangements for the 2009 Annual Medical Meeting. We are planning to hold this year’s meeting in conjunction with ME North East. The meeting will again be in the form of an ‘ME Question Time’. The current plan is to hold the meeting in Durham on a Saturday during October from roughly 11am to 3pm. Some form of pre-registration will be required. Further details will appear on the MEA website and in the May issue of ME Essential magazine.
OTHER ME/CFS MEETINGS
Royal Society of Medicine CS updated trustees on arrangements for the patient meeting in the ‘Medicine and ME’ series that will be held at the Royal Society of Medicine on Saturday 11 July. More information on this meeting can be found in the February issue of ME Essential magazine. The May issue of ME Essential will contain an insert with information about the programme, speakers, and details on how to apply to attend.
Invest in ME Conference TB and CS will both be attending this conference. The MEA will be providing information literature that summaries all the various initiatives taking place relating to post-mortem research.
MEA MANAGEMENT QUESTIONNAIRE
TB provided a further update 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. The first summary of the results appeared in the February issue of ME Essential magazine and a further summary covering symptomatic relief and what people want from NHS services will appear in the May issue. Work will soon start 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.
New MEA information literature on PHI/permanent health insurance problems and a To Whom it May Concern letter about Exams and exam concessions are now available.
A new information leaflet on Stress is being prepared for inclusion in the May issue of ME Essential magazine.
MEA literature can be obtained using the pdf ORDER FORM on the MEA website: www.meassociation.org.uk, 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 remains 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). The current (March) question relates to GP skills and knowledge about ME/CFS. Results from current and past on-line surveys can be found on the MEA website.
Work on updating the section on alternative and complementary therapies has started.
Trustees discussed the new MEA sites on Facebook and other social networking sites, which TB is currently helping to co-administer.
NR updated trustees on the training programme for ME Connect volunteers and approval was given for the financing of a new training programme to cover 2009. Trustees returned to the subject of 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 preliminary plans for the May 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.
There has been a problem with our printers regarding the mail out of the February issue – so if anyone has still not received a copy please let Head Office know.
DATE OF NEXT MEETING
Monday 16 June 2009
Summary prepared by Dr Charles Shepherd
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. This will be done 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, and that this defect cannot be explained by the deconditioning/inactivity model – at least in a sub-group of people with ME/CFS. More information on muscle research can be found in the research section of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’.