This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Friday 16 June 2007
Neil Riley (Chairman)
Gill Briody (Company Secretary)
Tony Britton (Press, Literature and Fundraising)
Trustees paid warm tributes to Christine Llewellyn, former Chair of the MEA, who died unexpectedly last week. Gill Briody attended the funeral in Wales on Wednesday this week.
FINANCES, STAFF AND PREMISES
No significant developments to report.
The underlying financial situation continues to remain stable and we are meeting our medium term target of having sufficient funds in the unrestricted reserve accounts to cover all administrative and salary expenditure for a full financial year. Trustees agreed to some further changes to our bank accounts to maximise interest income.
Ewan Dale, Honorary Treasurer, reported that the audit for the year ending December 2006 is proceeding to plan.
A number of current and future fundraising initiatives were discussed.
Barbara Stafford updated trustees on the major fundraising initiative that will involve her son and a companion walking the entire length of the River Amazon next year. A photoshoot for publicity purposes had just taken place at the Eden Project in Cornwall. For more information on the Amazon Walk see Ed Stafford and Luke Collyer’s fundraising website at: http://walkingtheam azon.com/ charities. shtml
Trustees congratulated Rick Osman – who was sponsored to run in the London Marathon. Rick completed the marathon in 4 hours 13 minutes.
Mark Douglas updated trustees on the mobile phone fundraising initiative. Details on how you can send in unwanted mobile phones will appear in the July issue of ME Essential.
We are still keen to hear from anyone who has company or other contacts that may be interested in sponsoring specific aspects of our work – in particular the MEA website, ME Connect, and the new issue of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ – also known as the MEA purple booklet. Please contact Tony Britton (tbritton02@yahoo. com) if you might be able to help.
2007 ANNUAL MEDICAL MEETING
This will take place in Peterborough on the afternoon of Saturday 15 September. The main part of the meeting will involve a presentation from Professor Richard Baker and officials from NICE on the new medical guidance on ME/CFS that is likely to be issued in August. Professor Baker is Chairman of the ME/CFS Guideline Development Group. The presentation should cover both the content of the guideline and the way in which it will be implemented into NHS practice. The meeting should therefore be of great interest to local group representatives and we hope that a good number will be able to attend. After the presentation there will be an opportunity for questions from the floor.
The second part of the meeting will be an update on current ‘hot topics’ from Dr Charles Shepherd. We are also hoping to include an update on local service provision in this region.
More details of this meeting will appear in the July issue of ME Essential.
Tony Britton provided some very encouraging statistics regarding use of the new website.
Plans for further development of the site were discussed.
MEA website: www.meassociation. org.uk
MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES
Charles Shepherd reported on a visit to Glasgow Caledonian University the previous day where he had met with Professor John Gow and Dr Gillian Gibson, who are carrying out the gene expression study. This work is proceeding to plan. Whilst there Dr Shepherd also attended the official opening of the new Centre for Forensic Investigation (which is headed by Professor Gow) and met with the Vice Chancellor and academics from the Life Sciences division to discuss the possibility of further ME/CFS research at GCU.
Dr Derek Pheby, who carried out the MEA funded research study into multiple factors that may be involved in the development of severe ME, reported some of his key findings to a meeting of the Melvin Ramsay Society in April. The full results from this study are now being prepared and submitted for publication.
Neil Riley reported on a meeting that had recently taken place to look at non charitable sources of funding for epidemiological ME/CFS research.
A meeting of the ME Observatory Steering Group took place on the same day. As this clashed with the Board meeting, the MEA could not, unfortunately, be represented.
Charles Shepherd has been invited to attend a research meeting at the Royal Society of Medicine organised by the Lancet and the James Lind Alliance. The meeting will examine comparisons between the research agendas of patients, clinicians and researchers and how the right trials with the right outcomes can best be organised.
Comprehensive information on the work of the MEA Ramsay Research Fund, including research that has recently been funded, is now on the MEA website. Similar information will appear in the July issue of ME Essential.
Neil Riley provided another very satisfactory progress report in relation to the work being carried out through Section 64 funding from the Department of Health.
Charles Shepherd reported on recent volunteer training sessions.
Trustees reviewed various other aspects of the work done by ME Connect – our telephone support and information helpline – including the very helpful feedback from the questionnaires that have been returned by a considerable number of local groups.
The ME Connect email service is now running smoothly after some initial problems caused by a significant rise in this form of enquiry following the relaunch of the MEA website. Trustees agreed to some further changes in procedure that will encourage people to make more use of the telephone service – as this is often found to be more helpful than trying to deal with queries by email. Please note that none of the services provided by ME Connect can give out individual medical or diagnostic advice..
ME Connect is open 7 days a week from 10am – 12 noon; 2pm – 4pm; 7pm – 9pm.
Members should call 0870 444 1835. Non members should call 0870 444 1836
Preparations for a visit to Head Office from John Bercow MP, one of our three new Patrons, were finalised.
ANGELA FLACK AWARD
In memory of former trustee Angela Flack, it was decided to introduce an annual ‘Angela Flack Award’. The award will be given to what our members believe is the most promising medical initiative during the year. More details will appear in the July issue of ME Essential.
CHARITIES ACT 2006
Ewan Dale and Neil Riley reported on how this Act, which is coming into effect over the next 12 to 18 months, may affect the MEA.
ALL PARTY PARLIAMENTARY GROUP (APPG)
Charles Shepherd reported on the last meeting of the APPG at which Dr Ira Madan, from NHS Plus, discussed the controversial new guidance on occupational health aspects of ME/CFS. In view of the widespread concern amongst ME/CFS charities, Dr Madan has agreed to meet with a small group of charity representatives to discuss possible changes to the NHS Plus leaflets. A date for this meeting in July has now been arranged..
It seems likely that the Early Day Motion (EDM) that was drafted by Dr Ian Gibson will now be taken forward by the APPG – possible content of a revised version, including reference to the NICE guideline on ME/CFS, will be discussed at the next APPG meeting in July.
The APPG intends to discuss the issue of problems relating to funding of the new NHS clinical services at the next meeting – provisionally fixed for 12 July at 1.30pm. Further details will appear on the MEA website, and in the July issue of ME Essential, when we have them.
SCOTTISH PARLIAMENT CROSS PARTY GROUP (CPG) ON ME
Ewan Dale outlined the proposals for reforming the CPG for the new parliamentary session.
DEPARTMENT OF WORK AND PENSIONS (DWP): NEW MEDICAL GUIDANCE FOR DLA AND CARERS ALLOWANCE APPLICATIONS
We have been informed that some further changes have been made to draft 9 of this new guidance. Draft 10, which we have not yet seen, will definitely be the final version.
Charities involved in discussion with the DWP have requested a copy of the new guidance and the date from when it will become operational.
The intention was to bring this new guidance in during June but it looks as though there will now be a further delay in making it operational.
As soon as we have this information it will be published on the MEA website.
NICE GUIDELINE ON ME/CFS
We understand that NICE still intends to publish this guidance in August (when a lot of people are on holiday) and that the charities will not have access to the final version prior to publication.
The MEA has appealed over a decision by NICE not to allow us to see certain information connected to the guideline development. We are now awaiting the result.
INVEST IN ME LONDON CONFERENCE
Tony Britton reported on this medical conference that was held in May. A full report will appear in the July issue of ME Essential magazine.
Trustees discussed a proposal that the ME Alliance should hold a meeting in September. It was agreed that this would be useful in view of the various campaigns that are being run regarding DWP benefit guidance, NICE, NHS Plus etc. Trustees also felt that this would be a useful opportunity to review the membership and role of the ME Alliance.
MEA LITERATURE, ‘PURPLE BOOK’ AND MAGAZINE
Tony Britton reported that the next issue of ME Essential would be published in mid July.
New information leaflets covering a variety of subjects will become available shortly. Topics include:
* Personalised explanation leaflet for doctors, employers etc on the effects of having ME
* Going into hospital
* Severe ME (ME Connect leaflet)
* Travel Insurance
* Disability Rating Scale
A fully updated and expanded 36 page purple booklet – ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ – will be available at the beginning of July.
We are currently out of stock of the Canadian Guidelines and are trying to obtain a further 200 copies.
MEA literature can be ordered using the insert in the magazine or the pdf order form on the website
DATE OF NEXT MEETING
This will take place on Thursday 30 August.