This is a brief summary of key issues that were discussed at the September meeting of The ME Association Board of Trustees. The full day meeting was held in Buckingham on Tuesday 2 September 2008. Informal discussions on some of these items also took place amongst trustees the evening before. Subjects are not necessarily placed in the order that they were discussed.
Rick Osman (Vice Chairman – who chaired the meeting)
Gill Briody (Company Secretary)
Tony Britton (Publicity Manager)
Apologies received from Neil Riley, who joined the meeting via a telephone link-up.
All is now running smoothly at the new Head Office at Apollo Court with the exception of a few minor issues, including the lighting.
Along with many other charities, we are having to cope with an increasingly difficult financial climate and having to manage with a slight fall in subscriptions and donations so far this year – whereas other aspects of income have held fairly steady, or in the case of literature sales have continued to significantly increase. Having taken a very strict line on expenditure over the past few years, we have managed to build up sufficient funds in the unrestricted reserves to cover a short term deficit and we continue to monitor the situation closely.
Changes to various aspects of the monthly accounting schedule and our current investment strategy for bank accounts holding unrestricted funds were discussed.
Amazon Walk: Barbara Stafford updated trustees on recent developments following the departure of Luke Collyer from the expedition. Ed Stafford is continuing the expedition on his own and is doing so without any serious problems. Following recent media publicity a number of people have expressed an interest in taking the place of Luke. You can follow the expedition progress on the Walking the Amazon website and blog: http://www.walkingtheamazon.com. Having previously decided to produce two MEA Christmas Cards this year showing appropriate scenes from the Amazon Walk involving Ed and Luke, it was felt that in view of Luke’s decision not to continue with the expedition this would not now be appropriate. It was therefore decided to postpone this idea till next year.
Mobile phone and printer cartridge recycling scheme: Mark Douglas updated trustees on the returns from these two very successful schemes. Please continue to send in unwanted mobile phones and used printer cartridges by using the special envelopes which can be provided by the MEA.
Trolley coins: Mark Douglas announced that 500 of these MEA trolley coins were now ready for sale (at £2 each) via the next issue of ME Essential. The coins can be used to replace £1 coins in supermarket trolleys, lockers etc. Trustees were very impressed by the quality and design.
Barbara Stafford reported on a number of other fundraising initiatives, including direct approaches to potential sponsors to help fund the work of ME Connect and the production of ME Essential magazine. These ideas had been discussed at a separate meeting of a fundraising sub-group held in London on 20 August.
Work on a new staff handbook has been completed.
MEA-FUNDED RESEARCH AND OTHER RESEARCH ISSUES
New research proposals Trustees discussed a new research proposal relating to muscle abnormalities in ME/CFS that has been received by the Ramsay Research Fund. It was agreed to continue discussions with the research group involved.
Post mortem research Charles Shepherd reported on the results of examination of tissues from a recent post mortem that the MEA had co-ordinated. A summary of what needs to be done in the case of someone dying with ME, who wants to leave their body to medical research, will appear in the October issue of ME Essential.
Valganciclovir Neil Riley and Charles Shepherd reported on a meeting that will be taking place on Monday 8 September with representatives from the drug company Roche in order to discuss research into ME/CFS in general and clinical trials into the antiviral drug valganciclovir (which is made by Roche and is currently undergoing clinical trials in America) in particular. We also intend to raise the issue of whether any other drugs made by Roche would be worth investigating in relation to ME/CFS.
MEA MANAGEMENT QUESTIONNAIRE
Tony Britton reported that we have now received around 2400 on-line questionnaires fully completed and around 700 on paper. The on-line version has now closed but we will continue to accept completed paper versions which were sent out in the July issue of ME Essential up to the end of September. This will make the MEA questionnaire the largest-ever survey of public opinion on the management of ME/CFS ever carried out in the UK. The results are now being analysed but given the very large number of replies, and the work now involved in analysing the vast amount of data, it will be later in the year before we can start to announce preliminary results.
MEA ‘QUESTION TIME’ MEETING IN COLCHESTER: SATURDAY 11 OCTOBER
Trustees finalised arrangements for this ‘Question Time’ meeting that we are holding in conjunction with the Colchester ME Group.
Panellists will include Dr Abhijit Chaudhuri, Jane Colby, Dr Charles Shepherd and Neil Riley. We are also hoping to include a dietician and someone who can cover welfare/benefit issues. The Panel will attempt to answer questions on whatever topics – benefits, children, medical, research, services, treatment – people wish to raise.
The meeting starts at 2pm. Admission is free and there is plenty of free parking.
More information on venue etc in the July issue of ME Essential or on the MEA website.
New leaflets either in production or nearing completion will cover:
- Employment and Support Allowance (which will replace Incapacity Benefit in October)
An updated 2008 version of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’ is almost ready for printing and this fourth edition of our very popular 36=page booklet for health professionals should be available later in September.
Tony Britton outlined the preliminary contents and reported that this would be published in October. Items include articles from Cathy Stillman-Lowe (on Getting Help from the Social Services), Jane Colby, Executive Director, Tymes Trust (on Children with ME) and Dr Charles Shepherd (Depression and Antidepressants). We are also expecting an article from the MRC covering their position on ME/CFS research.
ME CONNECT INFORMATION AND SUPPORT SERVICE
Trustees discussed whether there should be a change from the current use of an 0870 number to contact this information and support service. The problem we face is that a large percentage of calls come from non members and as the service is professionally run, using trained volunteers, there are considerable on-going costs to be met.
NICE GUIDELINE ON ME/CFS: JUDICIAL REVIEW
Charles Shepherd reported that no date has yet been set for the High Court hearing. As soon as further information is obtained from the legal team it will be placed on the MEA website..
Employment and Support Allowance Trustees discussed government plans to start replacing Incapacity Benefit with the new Employment and Support Allowance and the effect this may have on people with ME/CFS. Neil Riley will be drafting the MEA response to the Green Paper proposals. The Rt Hon James Purnell has now replied to our letter sent in July regarding how the DWP intends to consult with the ME community – see news archive on the MEA website.
A meeting of the ME Alliance (ie AfME, AYME, MEA, Tymes Trust and ME Research UK) will take place on Thursday 4 September after the 2009 Patient Meeting planning meeting at the Royal Society of Medicine. The agenda for this meeting is being kept flexible but will include research and parliamentary activity.
All Party Parliamentary Group (APPG) Tony Britton reported that the next APPG meeting will take place in Committee Room 18 at the House of Commons from 3 pm – 5 pm on Wednesday 8 October. The main topic for discussion will focus on benefits – in particular the new Employment and Support Allowance – provided James Purnell, DWP Minister, is able to attend. Minutes from the July meeting will be available shortly in the news archive on the MEA website. We shall be attending a meeting with Des Turner MP, Chairman of the APPG, to discuss the proposal made at the last APPG meeting to set up an enquiry into NHS services for people with ME/CFS. A date for the meeting proposed by the Countess of Mar to look at common ground (and not so common ground) between the major ME charities has also been fixed.
ROYAL COLLEGE OF GENERAL PRACTITIONERS (RCGP)
Charles Shepherd reported on a meeting with Dr Bill Reith that had taken place at the RCGP in London the previous day. The meeting had initially been arranged to discuss the RCGP decision to classify ME/CFS as a mental health disorder in an RCGP training curriculum document. As this issue has now been resolved, most of the discussion centred on how ME/CFS was being dealt with in primary care, along with the need for more post-graduate education of GPs on the subject.
ROYAL SOCIETY OF MEDICINE (RSM) – 2009 MEDICAL MEETING FOR PEOPLE WITH ME
Charles Shepherd, along with representatives from four other national support charities (AfME, AYME, Tymes Trust, 25% Group), will be attending a further planning meeting at the RSM on Thursday September 4th. At present, it looks as though this half day meeting aimed at people with ME, and planned by people with ME and charity representatives, will be taking place in Spring or early Summer 2009. The planning meeting will be deciding on the content of the paired presentations part of the programme and the choice of medical speakers who will be invited to participate.
Clinical guidance on ME/CFS for Scottish doctors and Needs Assessment Ewan Dale reported that new medical guidance for Scottish doctors being co-ordinated by Dr Gregor Purdie, which has been partly based on information contained in the MEA publication ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’, was now nearing the end of the stakeholder consultation period, as is the report on Health Care Needs Assessment, that is being prepared by the Scottish Public Health Network.
Trustees discussed the qualifications of two potential new trustees who have expressed a preliminary interest in joining the Board at some point in the future.
DATE OF NEXT BOARD MEETING
This will be held on Friday 7 November
NB: This is a summary of the Board meeting – not the official minutes.
Summary prepared by Dr Charles Shepherd, MEA Trustee