This is a summary of key points to emerge from two meetings of The ME =
Association Board of Trustees. =20
These meetings took place at our Head Office in Buckingham on Monday =
afternoon, September 7th 2009 and on Tuesday morning, September 8th =
2009. Informal discussions also took place on a number of issues on the =
Monday evening. Part of the Editorial team for the magazine discussed =
the content for the November issue on Tuesday afternoon.=20
Please note that this is a summary of the Board meetings - not the =
official minutes. =20
The order of subjects below is not necessarily in the order that they =
were discussed.
PRESENT
Trustees:
Ewan Dale (ED) - Honorary Treasurer=20
Mark Douglas (MD)
Neil Riley (NR) - Chairman
Charles Shepherd (CS) - Honorary Medical Adviser
Barbara Stafford (BS) - Vice Chairman
Officials:
Gill Briody (GB) - Company Secretary=20
Tony Britton (TB) - Publicity Manager=20
Apologies:
Rick Osman (RO)=20
FINANCES=20
ED updated trustees on the current financial situation. Trustees then =
discussed the monthly accounts for the period up to the end of July =
2009. Income for general funds continues to remain roughly in line with =
expenditure for the first seven months of the year - although the =
interest rate on our main reserve fund is protected from the full impact =
of the collapse in rates until November 2009. So we appear to have =
deferred the worst effects of the recession - at least for now. Trustees =
made some further minor changes to banking arrangements in order to =
maximise interest rates on the various bank balances.
The MEA is now facing a general situation whereby people are reducing =
the amount of money they are able or willing to give to the charity =
sector. At the same time, demand on our support and information services =
is steadily increasing, especially in relation to benefit and employment =
information now that the government's welfare/benefit reforms and the =
introduction of the ESA are starting to take effect. Consequently, =
trustees and staff are continuing to devote a significant part of their =
time to fundraising activities in order to maintain our current level of =
information and support services.
FUNDRAISING INITIATIVES
2010 London Marathon The MEA has paid for and secured two guaranteed =
places for experienced runners in the 2010 London Marathon - but we =
clearly need two good runners who can confidently guarantee to complete =
the run and also bring in a substantial amount of sponsorship money. =
If you think you can help please get in touch with Tony Britton. More =
information can be found in the MEA website announcement: =
http://www.meassociation.org.uk/content/archivecategory/2009/07/1/
Fundraising event at BGC Partners in London The MEA has been asked to =
take part in a major charity fundraising event that is being organised =
by BGC Partners in London on Friday September 11th. BGC is a global =
financial services company and each year this charity event is held in =
memory of colleagues who died in the Twin Towers in New York on =
September 11th 2001. All of the revenue generated from the day's =
trading at BGC is donated to the various charities taking part. More =
information on the 5th Annual BGC Charity Day can be found at: =
http://www.bgcpartners.com. An MEA press release on the event can be =
found at: http://www.meassociation.org.uk/content/view/955/161
Amazon Walk to raise funds for a tissue and post-mortem tissue/brain =
bank: BS reported on Ed Stafford's latest progress on his Amazon Walk - =
where he is now carrying a 35kg pack with the sole company of his guide =
Cho - because nobody else will accompany them through the very difficult =
swampy terrain in the Riozinho area of Brazil. Ed has been walking =
solidly for just over 530 days and his most recent blog describes life =
in this part of the Amazon basin. Ed's weekly progress can be followed =
on his Amazon Walk blog at http://www.walkingtheamazon.com. =20
Ed has a fundraising page for MEA research at =
JustGiving:http://www.justgiving.com/walkingtheamazonmeresearch. Around =
=A35,500 has been raised so far. Christmas cards and notelets featuring =
the expedition will soon be going on sale. Profits will be split =
between all the charities involved.
'Just Four Quid' Appeal Tony Britton reported on the new 2009 =
fundraising campaign which aims to bring in regular small donations for =
both the Ramsay Research Fund and for ME Research UK (MERUK). Total =
funds raised so far for both charities amount to almost =A35000. More =
information can be found at: =
http://www.meassociation.org.uk/content/view/854/190/
Eric Smart's Sponsored Cycle ride from Aberdeen to Australia TB =
reported that Eric Smart has decided to extend his cycle ride to include =
New Zealand and the USA. At present, he is cycling along the Stuart =
Highway in Australia from Alice Springs to his original destination of =
Adelaide, and hopes to complete this leg of his epic ride in the next =
few weeks. Eric has set himself a target to raise =A312,000 for The ME =
Association. If you would like to sponsor him, please click on =
www.justgiving.com/ericsmart
Summer raffle GB reported that there had been a steady return of =
tickets and the draw will take place on September 25th. Tickets will =
also be available at the ME Question Time event in Chichester. Winning =
numbers will be announced on the MEA website and in the November issue =
of ME Essential.=20
Christmas cards These are now available - two separate packs of ten, =
priced at =A33.50p per pack - and can be ordered using the literature =
order form insert in the magazine. The initial response from members =
has been good and a considerable number of packs have already being sent =
out.
Website shopping We are going to highlight the facility - =
easyfundraising - on the MEA website home page that provides a direct =
link to well known shops and stores. Purchasing goods on-line from =
companies such as John Lewis via the MEA website means that we receive a =
commission from the shop at no charge whatsoever to the purchaser.
Mobile phone and ink cartridge returns, trolley coins and computer mouse =
mats MD reported on financial returns from these on-going fundraising =
initiatives. Trolley coins can be ordered using the pdf ORDER FORM on =
the MEA website: www.meassociation.org.uk, or the literature order form =
insert in the August issue of ME Essential magazine, or by phoning MEA =
Head Office on 01280 818964/818968. Envelopes for the return of ink =
cartridges can be ordered using the literature order form insert in the =
August issue of ME Essential magazine. A mobile phone return envelope =
will again be inserted in November MEE.
Fundraising information Two new fundraising leaflets have been produced =
by BS and the fundraising sub-group - one of which was sent out in =
August ME Essential. A new leaflet describing suggestions for =
fundraising events is almost ready to go to the printers.
Legacies The importance of people considering making a bequest to the =
MEA in their Will was discussed. Future action will include an =
information leaflet plus a Will Codicil that is being prepared by BS =
and the fundraising sub-group. This will be inserted in the November =
issue of ME Essential. =20
A number of other fundraising initiatives were discussed, including an =
additional item of merchandise - an MEA 'magic mug'.=20
BOARD OF TRUSTEES - CO-OPTED TRUSTEES
Following the trustee elections in June we are still able to increase =
the number of trustees - so we are keen to hear from anyone who would =
like to discuss the possibility of joining the MEA as a co-opted =
trustee. Applications are welcome from people with ME, carers, and =
anyone who has skills which they feel could be of benefit to the =
charity. In order to proceed with an application, non members would =
have to become members of the MEA.
PARLIAMENTARY
APPG Inquiry into NHS Services CS reported on the progress of the =
Inquiry now that the oral hearings and written evidence gathering =
process has ended. The APPG website: http://www.appgme.org.uk contains =
information regarding Terms of Reference, timetable etc. A date for =
publication of the findings has not yet been announced. =20
APPG CS reported that the date of the next meeting of the APPG has still =
to be arranged but we are hoping that a minister from the DWP will be =
able to attend to discuss various current concerns relating to benefits =
- ESA in particular. Full details of the agenda, time, venue etc will =
appear on the MEA website at: http://www.meassociation.org.uk as soon as =
they become available. It is advisable to check with the MEA website =
the day before APPG meetings in case any late changes are made
Countess of Mar's Group: FORWARD ME CS reported that a date and topic =
for the next meeting has not yet been arranged. The Forward ME =
website: www.forward-me.org.uk has information about the group and =
archives of minutes from past meetings:=20
RESEARCH
Ramsay Research Fund (RRF) TB reported that a new section on the work =
of the RRF has now been added to the MEA website via a home page link.
RRF: Professor Julia Newton et al, University of Newcastle CS updated =
trustees on the new research study into muscle function and metabolism =
in ME/CFS that is being funded by the Ramsay Research Fund. Work =
involving the magnetic resonance imaging/MRI studies on muscle energy =
metabolism was due to take place over the summer. Further information on =
this study can be found in the August issue of ME Essential magazine..=20
RRF: Gene expression research Results from a study into gene expression =
carried out by Professor John Gow and colleagues in Glasgow, and funded =
by the RRF, has now been published in the open access journal, BMC =
Medical Genomics. Details can be found on the MEA website: =
http://www.meassociation.org.uk/content/view/902/
RRF: Post-mortem tissue bank feasibility study CS reported on a =
further meeting of the Feasibility Steering Group that is examining =
various aspects of how an ME/CFS specific tissue/post-mortem bank could =
be set up. The RRF will be co-funding the second part of the =
feasibility study - which will start in October 2009 - at an overall =
cost of around =A328,000. An article summarising all the various =
post-mortem research initiatives that are taking place can be found in =
the May issue of ME Essential and on the research section of the MEA =
website. Trustees also discussed the various post-mortem research =
examinations that we are currently involved with and a presentation on =
these findings that is due to take place at an international neurology =
meeting in October..
ME Observatory Steering Group CS reported on a Steering Group meeting =
that took place on 23 July. Work on all the various ME Observatory =
studies is proceeding to plan with several research papers being =
prepared or submitted for publication. The next ME Observatory meeting =
will take place on 30 October.
Medical Research Council (MRC) Expert Group on ME/CFS Research CS =
reported that the group will next meet when the two day research =
workshop is held on 19 and 20 November. More details on this meeting =
can be found in the August edition of ME Essential.
Diagnostic tests Trustees held further discussions on the two new =
diagnostic tests that are only available from the private sector - the =
mitochondrial function test and the hydrogen sulphide test. The =
possibility of the RRF funding an independent study to validate the =
results obtained so far from one of these tests is currently being =
discussed with a research group. An MEA statement on the hydrogen =
sulphide urine test can be found on the MEA website: =
http://www.meassociation.org.uk/content/view/875/193/
Immunological treatments CS reported on discussions he has been having =
with Professor Lars Lagerstrand at the Karolinska Institute in Sweden =
regarding further research into staphylococcal vaccine - an =
immunological treatment that has been successfully used to treat people =
with ME/CFS in Sweden. More information can be found on the MEA =
website: http://www.meassociation.org.uk/content/view/951/161/.
Association of Medical Research Charities (AMRC) Trustees discussed the =
pros and cons of submitting an application to join this organisation in =
2010.
Medical Advisory Panel At present, the MEA makes use of its Honorary =
Medical Advisers and an extensive list of other clinical and research =
experts when we require further advice on a specific clinical or =
research topic. Trustees discussed the pros and cons of having a more =
formal Medical Advisory Panel with Terms of Reference etc. It was =
decided to maintain the current position.
SCOTTISH MATTERS
ED and CS reported on progress relating to (a) publication of clinical =
guidance on ME/CFS for doctors in Scotland - a document partly based on =
the MEA purple booklet for health professionals ( 'ME/CFS/PVFS: An =
Exploration of the Key Clinical Issues) and (b) the Scottish Public =
Health Network Needs Assessment. As noted at the MEA Board meeting in =
June, the timescale for both projects has had to be re-organised and =
therefore delayed. =20
The current situation is that a further draft of the Scottish Good =
Practice Statement (SGPS) for GPs has been sent to medical stakeholders =
for further comment, which has now been received. The current version =
of the SGPS was officially launched at a Scottish Parliament reception =
during ME Awareness Week on 14 May. The current intention is to publish =
the Needs Assessment in the autumn.
ED and CS are both involved in a planning group that is making =
arrangements for a full day medical conference that was originally =
intended to take place on Wednesday 9 September in Glasgow at which the =
SGPS was to be introduced to health professionals. This launch has now =
had to be postponed - partly due to the additional workload imposed on =
GPs as a result of the swine flu pandemic. A revised date for this =
conference will appear on the MEA website as soon as we have it.=20
MEA ANNUAL MEDICAL MEETING: 'ME QUESTION TIME' IN SUSSEX ON SATURDAY 19 =
SEPTEMBER=20
Trustees discussed final arrangements for the 2009 Annual Medical =
Meeting. We are holding this year's meeting in conjunction with the =
Sussex based charity ReMEmber . The meeting will again be in the form =
of an 'ME Question Time' and will take place at Chichester Hospital on =
the afternoon of Saturday 19 September. Further details, including =
membership of the medical panel, can be found on the MEA website and in =
the August issue of ME Essential magazine.
OTHER ME/CFS MEETINGS
Royal Society of Medicine CS reported on what was generally felt to be =
a successful patient meeting in the 'Medicine and ME' series that was be =
held at the Royal Society of Medicine on Saturday 11 July. A report on =
this meeting will appear in the November issue of ME Essential.
University College, London meeting in September CS arranged for a =
discussion on the inclusion of the Lightning Process at this UCL meeting =
with representatives of other charities involved with the FORWARD ME =
Group at their last meeting in July. As a result an approach is going =
to be made to the organisers..
BENEFITS, ESA AND GREEN PAPER ON WELFARE REFORM
Trustees discussed the current situation regarding the government's =
proposals on welfare reform and the need to monitor people's experiences =
when claiming ESA. Feedback on this new work-related benefit is now =
starting to come in - almost all of which is indicating that people with =
ME/CFS are finding it very difficult, or almost impossible, to obtain =
ESA. We are keen to hear from anyone else who is trying to claim ESA.
Trustees discussed the most recent Green Paper proposals for welfare =
reform ('Shaping the Future for Care Together'), including the possible =
transfer of Attendance Allowance to Social Services. We are also very =
concerned that this proposal could be extended to include Disability =
Living Allowance. MEA trustees agreed to oppose any such proposal and a =
more detailed response to the Green Paper will be prepared. NR will be =
leading the Green Paper assessment as part of our preparation for an MEA =
response. In addition, The MEA would like to hear the views of our =
members on the Government's proposed changes to social care services, as =
this will help us to respond more effectively to the consultation =
process. Consultation on the Green Paper closes on 13th November 2009.
MEA MANAGEMENT QUESTIONNAIRE
Trustees were updated on the analysis of data from around 3500 on-line =
questionnaires and 750 paper questionnaires. The overall response makes =
this the largest ever survey of patient and carer opinion about =
management issues that has ever been undertaken here in the UK, possibly =
in the world. Work on the detailed statistical analysis of the results, =
which will provide the basis for the preparation of a more substantial =
report that summarises and comments on the results, is proceeding well. =
All the relevant patient feedback, in the form of a preliminary =
summary/report, has been passed to the APPG Inquiry into NHS Services. =
The intention is to make all this material available, plus any necessary =
comment, in the form of a report that can be given to health =
professionals, administrators etc. We are hoping that this will be =
ready for publication in 2010.
MEA LITERATURE
New MEA information leaflets on Employment and Support Allowance (ESA) =
and Cognitive Dysfunction are currently being prepared.
A new information leaflet on Muscle Energy Supplements - carnitine, =
creatine, Co-enzyme Q10, NADH etc - appeared in the August issue of ME =
Essential magazine.=20
The 2009 updated version of 'ME/CFS/PVFS - An Exploration of the Key =
Clinical Issues' is being prepared and this should be available in =
October.
MEA literature can be obtained using the pdf ORDER FORM on the MEA =
website: www.meassociation.org.uk, or the 8 page order form insert in =
the August issue of ME Essential magazine, or by phoning Head Office on =
01280 818064/818968.
MEA WEBSITE
Trustees agreed to make a number of changes and additions to the =
website, including highlighting the fact that you can shop on-line at =
many well known shops and the MEA receives a small commission in return.
The regular on-line survey feature remains very popular. Topics =
surveyed so far include public opinion on reactions to flu vaccination =
(November); the NICE guideline on ME/CFS (December); attitudes to =
post-mortem research (February); GP skills and knowledge (March); how =
much people have spent on services/treatments outside the NHS (May), =
Probiotics (August).. The current (September) question relates to the =
attitude of doctors who carry out medical examinations and assessments =
for DWP benefit application purposes.. Results from all the previous =
on-line surveys can be found on the MEA website.
.
ME CONNECT
New contact numbers As a result of changes and guidance from OFCOM =
relating to the use of 0870 telephone numbers trustees agreed at their =
June meeting to change the ME Connect contact number to an 0844 number. =
These 0844 numbers are endorsed by the Telephone Helplines Association. =
GB reported that the changeover has gone smoothly.
ME Connect, our telephone information and support service, operates =
every day of the week from 10am - 12 noon; 2pm - 4pm and 7pm - 9pm. =
Tel: 0844 576 5326. We are always interested in hearing from anyone who =
would like to become involved with this service as a volunteer.
ME ESSENTIAL MAGAZINE
TB reported on preliminary plans for the November issue of ME Essential. =
This will include an article on the gene expression research that has =
been funded by the Ramsay Research Fund, and which has now been =
published in BMC Genomics. A more detailed discussion took place with =
the Editorial Board on Tuesday afternoon. Copy for the November issue =
must be with TB by the beginning of October.
Trustees discussed whether there should be a more prominent warning =
about our policy regarding adverts in the magazine that refer to or are =
used to promote treatments, clinics and practitioners. Our current =
policy is that we believe that this information should be available to =
people and make it clear that publication of an advert does not imply =
endorsement or recommendation by the MEA. Trustees would welcome any =
feedback from members on this issue.
MEA HEAD OFFICE
Volunteers In addition to the telephone volunteers who deal with ME =
Connect enquiries, we have a small number of regular volunteers who come =
into the MEA office in Buckingham on a regular basis to help with =
various aspects of our work. The contribution made by Ann, Donald, =
John, Lydia and Pam is very much appreciated and will be covered in the =
November issue of ME Essential. If you know of anyone who lives locally =
to Buckingham, and would like to come into the office and help out =
occasionally please get in touch with Gill Briody. The MEA office is =
modern, on the ground floor of an out-of-town site, and has good car =
parking facilities.
Raising the profile of the MEA in Buckingham Trustees agreed on a =
number of ways in which we could help to raise the local profile of the =
MEA, with the intention of bringing in offers of help and financial =
support from members of local community.
DATE OF NEXT BOARD MEETING
Monday 9th and Tuesday 10th November 2009
MEA website: http://www.meassociation.org.uk
Prepared by Dr Charles Shepherd, Trustee
ENDS
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