This is a brief summary of key issues that were discussed at The ME Association Board of Trustees meeting held in Buckingham on Tuesday 13 November 2007.
It also covers a few matters that were discussed at an informal meeting of trustees held over dinner the evening before.
Neil Riley (Chairman)
Gill Briody (Company Secretary)
Apologies received from:
Rick Osman (Vice Chairman)
Tony Britton (Publicity Manager)
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 account to cover all administrative and salary expenditure for at least a full financial year. However, our central problem remains in that membership fees only account for around half of all general expenditure and that without donations, fundraising initiatives, literature sales and legacies we would not be able to provide the growing range and level of information and campaigning services that we do.
The process of rationalising our various bank accounts, and ensuring that they all produce a good rate of interest, is now almost complete.
Staff salary reviews for 2008 were discussed and agreed.
The audit documents for the financial year ending December 2006 have been completed and sent to Companies House along with the Director's Report. A summary of the accounts will appear in the January issue of ME Essential.
Neil Riley presented a report on Office Procedures.
Trustees discussed the first draft of new guidance on trustee expenses claims.
Head Office has a new colour printer and photocopier – so we are now able to introduce some colour into our information leaflets and other publications.
MEA ANNUAL GENERAL MEETING AND TRUSTEE ELECTIONS
Trustees provisionally agreed to hold the next AGM on Saturday 22 March 2008. The venue is likely to once again be the Littlebury Hotel in Bicester. Further details will appear in the January issue of ME Essential.
Several people have come forward and expressed an interest in becoming an MEA trustee – three of whom met with current trustees either the night before or during the Board meeting. Those who wish to proceed and stand for election will have their details published in the January 2008 issue of ME Essential – where a voting form will also be inserted. We are still keen to hear from anyone else who is interested in joining our small and friendly group of trustees. Please contact Gill Briody at Head Office as soon as possible if you are interested.
Various current and proposed fundraising initiatives were discussed.
Walking the Amazon: Ba Stafford updated trustees on this major fundraising initiative and reported on plans to hold a pre-departure fundraising function in London in February 2008. The Amazon Walk will be raising money for The MEA and five other charities. All money raised for The MEA will go into our MEA Ramsay Research Fund to help set up a hospital-based centre where tissue and post-mortem samples can be collected, stored and used by researchers who require tissue samples. We are pleased to report that one of our Patrons, the Duke of Kent, has agreed to become involved with the Amazon Walk fundraising initiative and that explorer Dr Mike Stroud OBE has now added his support on the official ‘Walking the Amazon' website: www.walkingtheamazon.com.
Mobile phone returns: Mark Douglas reported that this on-going scheme was now in profit. Anyone with an unwanted mobile phone can send it in using the envelope in ME Essential magazine. Addition envelopes can be obtained from MEA Head Office.
Printer cartridge return scheme: It was decided to hold back on this scheme at present due to the unsatisfactory terms of the contract we were being offered.
MEA-FUNDED RESEARCH AND OTHER RESEARCH ISSUES
Charles Shepherd reported on a number of research initiatives with which he MEA is involved. These include recent meetings held by the National ME Observatory steering group and the PRIME Project.
Trustees agreed to apply for associate membership of the James Lind Alliance – a charity that works to bring patients and researchers together. The James Lind Alliance has arranged several useful research-orientated meetings during the year which have been attended by MEA representatives.
Trustees discussed research studies that are, or have been, funded by The MEA Ramsay Research Fund:
Professor John Gow, Glasgow Caledonian University: Professor Gow's research assistant employed on this study into gene expression has decided to take up a lectureship post at Glasgow Caledonian University. There is, therefore, a temporary interruption in the progress of this study while a new appointment is being made.
Dr Derek Pheby: Results from this study into factors which are involved in the development of severe ME/CFS have now been submitted for publication. A two-page summary of this major research study can be found in the October issue of ME Essential magazine.
Dr Tony Ward, Newman College, Birmingham: Trustees discussed the final report on this study. The findings have been submitted for publication in a scientific journal. Dr Ward requires a new set of volunteers for a new research study looking at cognitive function – more information can be found in the October issue of ME Essential magazine.
Rhona Wilson, St Bartholomew's Hospital: Results from the nutritional study into the relationship between diet and ME, including the value of anti-candida diets, are due for publication. We have asked Rhona to summarise these results in the next issue of ME Essential.
Trustees agreed to provisionally collaborate with a new research study that is investigating what outcome measures (ie improvements in health, functioning and disability) are regarded as being important to people with ME/CFS.
Trustees decide to decline an offer to assist with a new research study that will examine the efficacy of CBT.
Charles Shepherd will be following up an expression of interest from a commercial company into cytokine research. NB: Cytokines are immune system chemicals that are released during infections and inflammatory processes and result in flu-like symptoms. There is evidence to indicate that cytokine dysfunction may be present in some people with ME/CFS.
Next APPG meeting: Tony Britton reported that no date has as yet been fixed – mainly due to difficulty in finding a date in November that is convenient for the Rt Hon Alan Johnson, Secretary of State for Health, to appear and take part in a discussion on NHS service provision and other issues causing concern. At present it looks as though this is going to be late November or even early December. As soon as we have the date it will appear on the MEA website.
Adjournment debate: Plans for a parliamentary adjournment debate, which The ME Association is helping John Bercow MP to organise, will also be discussed at the next APPG. John Bercow MP has informed the MEA that ME has been entered into the ballot for a debate in the week commencing Monday 19th November. The result of the ballot should be known on Wednesday 14 November. The MEA letter asking MPs to support an adjournment debate can still be downloaded from the MEA website.
Scottish Cross Party Group Ewan Dale reported that the SCPG had appointed Andy Kerr MSP (Lab), a former Scottish health minister, and Mary Scanlon MSP (Con) as their co-convenors and that the first committee meeting had been held. The next committee meeting will take place on 5 December. The group intend to hold their first full meeting before the winter recess, if possible.
NHS PLUS LEAFLETS
Neil Riley updated trustees on the attempt by the joint charity group (which is co-ordinated by the MEA) to try and obtain further changes to the three leaflets on occupational health issues that have been produced by NHS Plus. We have yet to receive a reply to our comments that were sent in some time ago. We will be chasing this up.
NICE GUIDELINE ON ME/CFS
With the first evidence appearing that primary care trusts (PCTs) are starting to act on the recommendations in the NICE guideline, trustees agreed to establish a number of initiatives to monitor how this guidance is being implemented by NHS service providers.
The first step is to send out a questionnaire to any PCT, or new service lead practitioner, once we have identified that a service is being proposed or being brought into place. We have already sent out a questionnaire to the clinical lead for the new Portsmouth service but not yet received a reply. To continue this work we need members or local groups to notify us as soon as they are aware that a new NHS service is being proposed or planned. A copy of the new service questionnaire will be made available on the MEA website in due course and we hope that local groups will find the questions helpful.
As new NHS services open we are very keen to receive feedback from both individuals and local groups on how they are performing.
ME CONNECT TELEPHONE INFORMATION AND SUPPORT SERVICE
Neil Riley presented the most recent report on our support and information service.
A report summarising feedback from the ME Connect local group survey was discussed and trustees agreed that it was important to continue with our various initiatives to improve links with all local groups. In particular, we want to be kept informed by local groups about news which could go into ME Essential magazine and changes in any contact details that need to be placed on our website information pages..
Trustees discussed the further development of the ME Connect email service. It was reported that this is now running very smoothly.
We are now entering the final phase of the work covered by the Section 64 grant funding from the Department of Health. This will cease in March 2008.
ME Connect volunteers are available every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm.
Members should call: 0870 444 1835 Non members should call: 0870 444 1836
MEA LITERATURE and ME ESSENTIAL
New Management Files on Employment Issues and Nutrition are being added to our literature list. The 4-page leaflet on all aspects of employment covers benefits; PHI policies; being off sick; returning to work; other work options, the Disability Discrimination Act as it applies to ME/CFS and early retirement on grounds of ill health.
The contents of a new members information pack, which will operate as from January 2008, were approved.
The MEA now has over 50 different leaflets, booklets and books covering all aspects of ME/CFS – the largest of any UK ME/CFS charity. MEA literature can be obtained using the pdf order form this website (use the ‘quick link’ on the home page) or the order form insert in ME Essential magazine. The order form now includes a brief description of all the leaflets we produce.
The next issue of ME Essential magazine will appear in January 2008.
Following all the recent improvements, our website is now top of the list on Google for people searching for information on M.E.
Further development of the website was briefly discussed.
DATE OF NEXT BOARD MEETING
This will be held on Tuesday 22 January 2008
NB: This is a summary of the Board meeting – not the actual minutes.
16 November 2007