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 year's 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.
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
NB: This is a summary of the Board meeting – not the actual minutes
[Summary prepared by Dr Charles Shepherd]