MAY BE REPOSTED
This is a summary of key issues that were discussed at a meeting of The ME Association Board of Trustees. The full day meeting was held in Buckingham on Tuesday 24 June 2008. Informal discussions on some of these issues also took place on the evening before.
Neil Riley (Chairman)
Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)
Rick Osman (Vice Chairman)
Having had to vacate our previous premises at fairly short notice in April, due to the expiry of a temporary lease, this was the first meeting to be held in our new premises just outside the town. Gill Briody reported that the move had gone smoothly and that everything was now running to plan – with the exception of a few minor teething problems.
Members should note our new address:
7 Apollo Office Court
Buckinghamshire MK18 4DF
Administrative and ME Connect telephone and email details remain the same.
During the past few months our expenditure has been exceeding income by a small amount. This is partly due to additional costs caused by the office move and a change in accounting procedures relating to one of our major costs: magazine expenditure. There is also a regular downturn in income during the first quarter of the year. Fortunately, due to very tight controls over expenditure over the past few years, we have been able to build up sufficient funds in the unrestricted reserves to cover a short term deficit, and we continue to monitor the situation closely.
This situation does, once again, highlight the problem that it costs The MEA around £36 per year per member to provide the steadily growing range of membership services that we offer and that this can only be achieved if people are also willing to consider also making an annual donation, or taking part in some form of fundraising event to help the MEA.
FUNDRAISING AND THE AMAZON WALK
Barbara Stafford reported on a number of current and future fundraising initiatives. Included in this was a proposal to look again at legacies and Wills.
Recycling computer printer ink cartridges is about to be added to the mobile phone recycling scheme – envelopes can be obtained from Head Office and will be available to MEA members in the July issue of ME Essential.
Mark Douglas provided estimates for an MEA Trolley Coin – that can be kept on a key-ring and used in place of £1 coins in supermarket trolleys, locker rooms etc. The coins should be available via ME Essential in October.
Barbara Stafford reported on the Amazon Walk – which is raising money for our tissue bank and post-mortem research appeal. Ned and Luke have now been trekking for just over two months and all is going well. You can follow their expedition on the Walking The Amazon website and blog: http://www.walkingtheamazon.com
Details on this years raffle will appear in the July issue of ME Essential.
This year we will be selling Christmas Cards once again – two high quality designs using photographs of Ned and Luke in some suitably snow covered terrain in South America. Full details on how to order packs of 10 will be available in October ME essential.
MEA FUNDED RESEARCH AND OTHER RESEARCH ISSUES
Professor John Gow’s study into gene expression at Glasgow Caledonian University
The appeal for more volunteers to provide blood samples for this major research piece of research, which is looking for abnormalities in gene function in ME/CFS, has been successful. A ‘Thank you’ letter will appear in the July issue of ME Essential.
New research proposals
Trustees discussed an application to fund a study that will look at quality of life issues in ME/CFS. It was also agreed to approach a well established existing research group to ascertain whether they were still in need of funding.
Although The MEA is still raising funds to set up a post-mortem and tissue bank facility here in the UK, we do now have funding available to facilitate post-mortem research – should this be required. A few weeks ago the Ramsay Research Fund was approached in relation to a recent sudden death of someone with ME/CFS and we are able to guarantee funding for any costs that could not be met by the hospitals, pathologists and doctors involved.
Dr Tony Ward
Results from this research into the value of counselling and counsellors in ME/CFS, which was partly funded by the ME Association, has now been published in the Counselling and Psychotherapy’s Research Journal. A short summary of the paper will appear in the July issue of ME Essential.
Correspondence with the Medical Research Council
As a result of correspondence with Sir Leszec Boryziewich, Chief Executive of the Medical Research Council, we shall be meeting the MRC to discuss the urgent need for government funded biomedical research into ME/CFS. This meeting will hopefully take place shortly. A summary should appear in the July issue of ME Essential magazine – if the meeting takes place in time. Copies of our correspondence with the MRC can be found on the MEA website: http://wwww.meassociation.org.uk
Royal Society of Medicine (RSM) meeting for patients
The ME Association has been invited to a preliminary planning meeting at the RSM to discuss a proposal to put on a meeting aimed at patients rather than health professionals. It is proposed that this meeting will take place in the next academic term at the RSM – ie sometime after October 2008.
EUROMENE (European ME Network)
Charles Shepherd reported on a meeting of this group of doctors from the UK and various overseas countries that was held in London on 21 May. The EUROMENE group has been set up to promote greater co-operation between doctors in different countries, mainly within Europe, who are involved with either clinical or research aspects of ME/CFS. One result of this meeting is that Dr Shepherd has been invited to Milan in September to speak at a conference for Italian doctors on the situation here in the UK.
ME Observatory: epidemiological research
The next meeting of the Steering Group, on which the MEA is represented, will take place in London on 18 July.
Charles Shepherd reported that it has not been possible to arrange a further Steering Group meeting before the summer holidays – so this has been postponed until later in the year.
Neil Riley updated trustees on our most recent correspondence with Roche, the manufacturer of this antiviral drug, in relation to our approach to them to try and set up a UK clinical trial.
A PLACE FOR ME
A presentation was given by two representatives from this Norfolk based charity in order to learn more about their plans to set up a residential home and respite facility for four people with moderate to severe ME. Plans are currently at a preliminary stage and we hope to report further in ME Essential.
ME/CFS MANAGEMENT QUESTIONNAIRE
Tony Britton updated trustees on responses to the electronic version of this questionnaire, which can be accessed on the MEA website.
So far, just over 1400 people have started the questionnaire. Over 1000 have completed it.
NB: The questionnaire, which is quite long, can be completed in stages as is required – there is no need to try and do it all at once.
A paper version of the questionnaire will appear in the July issue of ME Essential. However, we would prefer people to fill in the electronic version if at all possible – as this makes data collection and analysis much easier.
We intend to close the questionnaire at the end of August and provide a preliminary analysis of results in the October issue of ME Essential.
As part of our current initiative to look at the sort of management programmes that people with ME/CFS say they want it was agreed that Dr Shepherd should try and pay a short visit to Norway to see how their multidisciplinary programme works.
MEA ANNUAL MEDICAL MEETING: ‘ME QUESTION TIME’ IN COLCHESTER, ESSEX on SATURDAY 11 OCTOBER
Trustees discussed arrangements for our annual medical meeting, which is being done in conjunction with the Colchester ME Group.
The meeting will be held at Colchester County High School for Girls in Essex on Saturday 11th October from 2pm to 5pm.
This year we are going to have a Question and Answer session with a provisional Panel consisting of:
- Dr Abhijit Chaudhuri (subject to confirmation)
- Jane Colby (Tymes Trust)
- Neil Riley
- Dr Charles Shepherd
- Possibly one other – a dietician or benefits advisor from the DWP?
Further details will appear in the July issue of ME Essential magazine.
ME/CFS CONFERENCE REPORTS
Invest in ME and MERUK
Charles Shepherd reported on the Invest in ME Conference that was held in London on 23 May. A full report on this, and the MERUK Cambridge conference, will appear in the July issue of ME Essential.
NICE GUIDELINE ON ME/CFS
Trustees discussed the recent High Court decision to allow a judicial review relating to the procedures employed in preparing the NICE guideline to take place in the autumn. A summary of the High Court proceedings on Tuesday 17 June can be found in the news section of the MEA website. A more detailed summary will appear in July ME Essential.
House of Lords Questions to Lord Darzi
Charles Shepherd reported on a series of questions that were put to health minister, Lord Darzi, in the House of Lords on Monday 2 June. These included questions on WHO classification and the RCGP and children with ME. A full transcript of this mini debate can be found in the news section (June archive) on the MEA website. Trustees expressed their disappointment at the failure of Lord Darzi to agree to a meeting with ME charity representatives that Ann Keen, Parliamentary Under Secretary at the Department of Health, had attempted to organise following the last APPG meeting.
All Party Parliamentary Group on ME (APPG)
The next APPG meeting will take place on Wednesday 2 July. The subject for discussion is child protection issues affecting families where there is a young person with ME. We are hoping to have a government spokesman present – if one can be arranged.
More details re venue and times at the House of Commons can be found on the MEA website. The minutes for the last APPG meeting can be found on the MEA website.
NB: APPG meetings are open to the public but you need to arrive in good time to get through the security. The House of Commons venue can change at short notice – so check details on the MEA website the day before.
ROYAL COLLEGE OF GENERAL PRACTITIONERS (RCGP) CLASSIFICATION OF CFS
Trustees discussed the response from Dr Bill Reith at the RCGP in relation to our complaint about CFS being classified in an RCGP curriculum document as a mental health disorder. A meeting with Dr Reith is now been arranged. Copies of the exchange of correspondence with the RCGP can be found in the news section (June archive) of the MEA website.
Ewan Dale reported on two recent service provider and patient representative stakeholder meetings in Edinburgh on 9 and 22 June for the Needs Assessment initiative being carried out by the Scottish Public Health Network. The aim is to gather a range of views to inform the assessment of needs and the direction of the NHS service development for CFS and ME in Scotland. Ewan also reported on a second initiative to provide a Good Practice Statement on ME/CFS for Scottish GPs – a project which will be using the MEA purple booklet for doctors as a key source of information.
ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE
New guidelines on caller confidentiality issues were discussed and approved…
The number of email enquiries has been falling during the past few months, possibly because people are now realising that answers to many of these queries can be found in MEA information sheets – that now cover all aspects of diagnosis and management. A full list of MEA literature can be found on the pdf ORDER FORM on the MEA website.
Recent additions to MEA information sheets include:
- Carer’s Allowance
- Vitamin D
- A 2008 updated version of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ is being prepared and will be available in September.
New information leaflets on Dentistry, the government’s Employment and Support Allowance, and Social Care are now being planned or prepared.
ME ESSENTIAL MAGAZINE
Tony Britton reported on the content of the July issue of the magazine – which will be our first ever 60 page issue.
DATE OF NEXT BOARD MEETING
This will be held on Tuesday 2nd September
MEA website: http://www.meassociation.org.uk
NB: This is a summary of the Board meeting – not the actual minutes
[Summary prepared by Dr Charles Shepherd]