This is a short summary of key points to emerge from a full day meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Friday 7 November 2008. Informal discussions involving trustees also took place on a number of issues the night before.
Please note that this is a summary – not the official minutes.
The order of subjects below is not necessarily in the order that they were discussed.
Ewan Dale – Honorary Treasurer (ED)
Mark Douglas (MD)
Neil Riley – Chairman (NR)
Charles Shepherd – Honorary Medical Adviser (CS)
Barbara Stafford (BS)
Gill Briody – Company Secretary (GB)
Tony Britton – Publicity Manager (TB)
Rick Osman – Vice Chairman
NR departed slightly before the close of the meeting as he had to attend an important civic function in Dorking which related to fundraising.
Trustees spent a considerable amount of time during the morning session discussing finances, and how in the current economic climate we are doing all we can to control expenditure and secure the best rates of interest on money held in our unrestricted and restricted reserve accounts. We have never placed any of the charity’s financial assets in foreign banks and so none of our investment income has been subject to the major problems that some other charities are now experiencing. We are, however, now faced with a significant fall in interest income as a result of the 1.5% drop in base rate, which was announced during the meeting.
Staff salary levels for 2009 were discussed and agreed.
ED reported on a meeting held on Thursday afternoon (6th Nov) that had discussed the simplification of monthly accounting procedures for the MEA and the reporting procedures for ME and You Ltd – our merchandise and literature trading arm.
ED explained that despite a difficult start to the year, partly due to extra expenditure produced by the move of Head Offices to new premises, we are now almost back to a position where income is in line with expenditure. 2009 is obviously going to be a challenging time for patient support charities such as the MEA that rely on income from subscriptions and donations and do not receive any funding from either government or pharmaceutical companies.
Amazon Walk to raise funds for a tissue and post-mortem bank: BS reported on the Ed Stafford’s progress on the Amazon Walk. Ed has now covered a distance of over 1,000 miles – and is roughly a quarter of the way through the expedition. Progress can be followed on the Amazon Walk blog at www.walkingtheamazon.com
Mobile phone and ink cartridge returns and trolley coins MD updated trustees on income from these increasingly successful initiatives. Trolley coins (ideal stocking fillers for Xmas!) can now be ordered using the pdf ORDER FORM on the MEA website (www.meassociation.org.uk) or the insert in the November issue of ME Essential magazine.
Literature, books etc We are currently experiencing a significant rise in demand compared to previous years.
Trustees agreed that active fundraising must continue in view of the fact that subscription income only covers half our annual expenditure. A number of other fundraising initiatives were discussed.
Trustees agreed a provisional timetable for the 2009 AGM and trustee elections. Although no firm date was fixed for the AGM this will probably take place in June or early July
NICE JUDICIAL REVIEW
CS updated trustees on the NICE judicial review the evening before. A two day Hearing has now been listed to take place in the High Court in London on 11 and 12 February 2009. More information in the November issue of ME Essential magazine and MEA website news archive: www.meassociation.org.uk/content/view/673/70/
APPG Inquiry into NHS Services CS reported on progress to date, including a meeting that the APPG Secretariat had with Des Turner MP the previous week. Comments on the draft Terms of Reference must be received by Friday 14 November – more information on the MEA website news archive: www.meassociation.org.uk/content/view/689/70/ Further information will appear on the MEA website news section as it becomes available.
APPG It looks as though the next meeting of the APPG, provisionally planned for early December, may now be deferred until early in 2009. Topics and speakers are still to be arranged. The minutes of the 8 October meeting will appear on the MEA website (news section) once they have been approved
Countess of Mar’s Group CS reported on the decision by the charities and organisations involved in this initiative to continue working together and to hold a second meeting at the House of Lords on Tuesday 18 November. A website is being set up so that information about the group and minutes from meetings are made public.
Professor John Gow’s study into gene expression research Trustees discussed a progress report that relates to work that has been funded by the Ramsay Research Fund. Funding to continue this very important piece of research is now being provided by The Cunningham Trust. The new funding will allow Professor Gow and Dr Suzanne Hagan to continue with the research until May 2010. A progress report on this study was recently given by Professor Gow to an international conference on fatigue that was held in Japan. A separate progress report on this research, along with an abstract of the conference presentation given in Japan, appears in the November issue of ME Essential magazine.
Ramsay Research Fund (RRF) approves a new research study on muscle abnormalities Trustees held a further discussion on a proposal that we have received from Professor Julia Newton and colleagues at the University of Newcastle to examine various aspects of muscle function in ME/CFS. Professor Newton has been investigating the role of autonomic nervous 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 RRF will be looking at whether there is a peripheral (ie muscular) component to exercise-induced fatigue and how skeletal muscle produces lactic aid during exercise and then removes the acid during the recovery phase. The proposed study will take forward findings from small studies that are already published which indicate that there is a defect in muscle energy metabolism/production that cannot be explained by the deconditioning model – at least in a sub-group of people with ME/CFS. A very supportive outside peer review assessment of the proposal was considered. Trustees decided to unanimously approve funding for the study, which will come from the Ramsay Research Fund. A further report on this important new item of biomedical research will appear in the February issue of ME Essential magazine.
ME Observatory Steering Group CS reported on the last meeting of the Steering Group that was held on Friday 10 October. The various studies are all proceeding to plan. Among the items discussed was a proposal to hold some public meetings next year where the work of the MEO could be presented. The next Steering Group meeting will take place in January 2009.
Post-mortem tissue bank feasibility study CS reported on a meeting of the Steering Group that is 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 here in the UK. It was agreed that CS should visit one of the existing post-mortem/tissue banks in the UK to take this preparation forward.
Manchester University study into public recognition of ME/CFS BS reported on this study that the MEA is co-operating on.
Medical Research Council (MRC) Advisory Group on ME/CFS Research CS updated trustees on the current situation regarding this group, which is being set up by Professor Stephen Holgate. The MEA has been invited to give a presentation to the group at a meeting that has been provisionally arranged by the MRC for mid December. Dr Joanna Latimer, the scientist at the MRC responsible for ME/CFS research, has written an article for the November issue of ME Essential.
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. A further draft is now being commented on by stakeholders with the intention of having a new version available for the Scottish Parliamentary Cross Party Group when they meet on 3 December 2008. Distribution of the final document is currently scheduled for January 2009. The Scottish Needs Assessment is still being discussed.
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. Preliminary results on feedback relating to patient experiences of CBT and GET will appear in the November issue of ME Essential magazine. Given the massive amount of data still to be analysed, it will be 2009 before a more comprehensive summary is published. All of the relevant patient feedback will be passed to the APPG Inquiry into NHS Services.
New information leaflets now available include:
a Dental Health – written by our new Honorary Dental Adviser, Dr Richard Cantillon
b Depression and antidepressants
c Social care
A fully updated 2008 edition of our 36 page booklet ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ has now been published. This booklet, which covers research, clinical assessment, and all aspects of management is primarily aimed at health professionals but is written in a way that non medical people can also understand.
Literature being planned:
a Exams – information for schools etc on how to help people with ME/CFS
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 November issue of ME Essential magazine.
BS reported on a new awareness video that is designed to inform the general public about the nature, severity and impact of ME/CFS. The three minute video combines photographs of people with ME describing how they have been personally affected, along with information about symptoms and severity. The visual side is accompanied by the song ‘If Only’ sung by Maddy Stuckey. The video should be up on the MEA website, YouTube etc very shortly.
Trustees agreed to insert a new regular on-line survey feature which poses a very simple question each time. The first survey is likely to be asking people who have had a flu vaccination if they have experienced any adverse effects on their ME as a result. The first survey will appear shortly – as soon as TB has sorted out the software that we need to insert this feature.
Trustees discussed a 2009 programme for volunteer training and agreed to finance some further volunteer training out of general funds.
ME ESSENTIAL MAGAZINE
The November issue of ME Essential will be sent out very shortly. There has been a slight delay in production due to problems beyond our control at our previous printer. We do not anticipate any further problems. The next issue will appear in February 2009.
MEA OFFICE VOLUNTEERS
Over lunch on Friday, trustees and staff met with some of our volunteers who come in periodically during the week to provide valuable assistance at Head Office.
DATE OF NEXT MEETING
Provisionally fixed for Tuesday 27 January 2009
Summary prepared by Dr Charles Shepherd