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, November 9th 2009 and on Tuesday morning, November 10th 2009. =
=20
Informal discussions also took place on a number of issues on the Monday =
evening.=20
Please note that this is a summary of the two Board meetings - not the =
official minutes. =20
The order of subjects below is not necessarily in the order that they =
were discussed.
NB: We are currently carrying out maintainence on the MEA website - if =
you have any problem with a link below please go to the SEARCH facility =
on the home page at: http://www.meassociation.org.uk
PRESENT
Trustees:
Ewan Dale (ED) - Honorary Treasurer=20
Mark Douglas (MD)
Rick Osman (RO)
Neil Riley (NR) - Chairman
Charles Shepherd (CS) - Honorary Medical Adviser
Barbara Stafford (BS) - Vice Chairman
Janet Thomas (JT) - newly co-opted trustee
Officials:
Tony Britton (TB) - Publicity Manager=20
Apologies:
Gill Briody (GB) - Company Secretary
FINANCES, STAFF AND PREMISES=20
ED updated trustees on the current financial situation and =
administrative arrangements for the return of audited company accounts =
for the period up to the end of 2008. =20
Trustees discussed the monthly management accounts for the period up to =
the end of September 2009. Despite a drop in income in the last four =
months, income for general funds continues to remain roughly in line =
with expenditure over the whole of the first nine months of this year. =
Membership income is above the same period last year - which reflects a =
steady growth in new members joining the MEA throughout the year. =20
Due to good forward planning the interest rate on our main reserve fund =
has been protected from the full impact of the collapse in interest =
rates up until now - when these rates are about to expire. Trustees =
therefore agreed on new arrangements for the business and research =
deposit accounts that are held in reserve.
The MEA is continuing to face 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 having to devote a significant part =
of their time to financial matters and fundraising activities in order =
to maintain our current level of information and support services.
Christmas and New Year arrangements were finalised. Please note that =
the Head Office will be closed from end of business on Thursday 24 =
December till Monday 4 January. The ME Connect information and support =
service will continue to operate over most of the Christmas and New Year =
period.
FUNDRAISING INITIATIVES
2010 London Marathon The MEA has paid for and secured two guaranteed =
places for experienced runners in the 2010 London Marathon and we have =
been looking for two good marathon runners who can confidently guarantee =
to complete the run and also bring in a substantial amount of =
sponsorship money. Trustees reviewed applications that have been =
received and decided on the allocation of the two places. Thanks to =
everyone who applied. The standard of applications was high and it was =
difficult job to choose the two front runners. Information on our two =
chosen runners will appear in the November issue of ME Essential =
magazine.
Fundraising event at BGC Partners in London The MEA took part in a =
major charity fundraising event that was 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, but no decision has yet been made on the =
distribution for this year. 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 along with photos =
of some of the celebrities - including Ian Botham, Elaine Page and Tara =
Palmer-Tomkinson - - who took part. A feature on this event will =
appear in November ME Essential.
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 in the Coari region of Brazil. Ed and "Cho" have been =
joined for a few weeks by Pete Casey - one of his UK sponsors. Ed has =
been walking solidly for just almost 600 days and hopes to finish this =
epic journey in August 2010. 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 . The Daily Mail, =
Hello! and Sun recently carried features on the walk. Daily Mail link =
>> http://www.meassociation.org.uk/1056 =20
Trustees also discussed a number of possible options for major =
fundraising events when Ed returns from the Amazon in late 2010. And if =
anyone is willing to hold a fundraising event in the next few months, Ba =
Stafford (MEA trustee) will happily attend and give a short talk on the =
expedition and the tissue bank appeal.
Ed Stafford has a fundraising page for MEA/RRF research at =
JustGiving:http://www.justgiving.com/walkingtheamazonmeresearch. Around =
=A38,000 has been raised so far and Ed hopes to raise around =A320,000. =
'Just Four Quid' Appeal TB updated trustees on the 2009 fundraising =
campaign which aims to bring in regular small donations for both the =
Ramsay Research Fund and for ME Research UK (MERUK). The total amount =
raised so far for both funds amounts to almost =A37,000. 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 Eric Smart =
is extending his cycle ride to include New Zealand and the USA and has =
set himself a target to raise =A312,000 for The ME Association. There =
were features on Eric in the Scottish Sun >> =
http://www.meassociation.org.uk/1049 and in the Scottish Daily Mail (no =
website link). If you would like to sponsor Eric, please click on =
www.justgiving.com/ericsmart
Summer raffle The draw took place on September 25th. Winning numbers =
were announced on the MEA website and will appear 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. Cards can be obtained using the literature =
order form insert in the magazine. The initial response from members =
has been good and a considerable number of packs are being sent out.
MEA website shopping We are highlighting a facility - known as =
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. All =
businesses have some tax allowances that they could claim for charitable =
donations.
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 November 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. A mobile =
phone return envelope will 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. The second leaflet, to be printed shortly, =
describes ME symptoms and the work of the MEA. It can be given out at =
fundraising events and used for approaches to sponsors and requests for =
donations.
Legacies The importance of people considering making a bequest to the =
MEA in their Will was again discussed. Progress on an information =
leaflet plus a Codicil that has being prepared by BS and the =
fundraising sub-group were taken forward.=20
A number of other fundraising initiatives were discussed, including an =
additional item of merchandise - an MEA 'magic mug'. This will be =
available to purchase in the November issue of ME Essential.
BOARD OF TRUSTEES - CO-OPTED TRUSTEES
Trustees welcomed Janet Thomas to the Board - a new co-opted trustee. =
Janet has already been involved with the MEA on a number of specific =
projects - the Management Questionnaire in particular where she has =
played a key role. Janet has a background in veterinary science. More =
information on Janet will appear in the November issue of ME Essential.
We are still able to increase the number of co-opted trustees - so we =
are keen to hear from anyone who would like to discuss the possibility =
of joining the MEA in this role. Applications are welcome from people =
with ME, carers, and anyone who has a skill 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.
2010 AGM AND TRUSTEE ELECTIONS
Trustees prepared a provisional timetable for these events.
PARLIAMENTARY
APPG Inquiry into NHS Services CS reported on progress to date. It is =
intended to have the Report ready for a public launch at the next =
meeting of the APPG in early December. The APPG website: =
http://www.appgme.org.uk contains information regarding Terms of =
Reference, timetable etc. Trustees agreed that the MEA should help =
fund the production of some paper copies of the report as we believe =
this information should be readily available to members of the public =
who do not have internet access. The content, conclusions and =
recommendations contained in the report are the responsibility of the =
parliamentarians. Whilst the Secretariat has been providing information =
and advice we have not been involved in the data collection, =
administration or the writing of the report. We are therefore free to =
comment as we see fit on the contents (which we have not seen) when the =
report is published in December
APPG CS reported on the last (October) meeting of the APPG and the =
presentation from the Rt Hon Yvette Cooper on DWP Benefit issues. A =
summary of this meeting can be found in the October news archive on the =
MEA website. The date of the December meeting of the APPG has not yet =
been confirmed but Wednesday 2nd December is highly likely. 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 the next meeting =
will take place on 24 November. Dr James Bolton, Deputy Chief Medical =
Adviser at the DWP, has agreed to attend to discuss and answer questions =
on DWP benefit issues, including ESA. The Forward ME website: =
www.forward-me.org.uk has information about the group and archives of =
minutes from past meetings:=20
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
RRF: XMRV: Trustees devoted a considerable amount of time to discussing =
the new XMRV research findings from America and the role of the MEA =
Ramsay Research Fund in potentially funding UK research groups who want =
to try and replicate the findings, or do other relevant work on XMRV. =
CS reported on the various contacts and discussions he has had with =
virologists on how best to take this research forward in the UK. The =
MEA has issued a website position statement on XMRV, which is being =
regularly updated currently version 4). We have also written to Sir =
Liam Donaldson, Chief Medical Officer at the Department of Health, about =
the research findings and the implications for blood donation and blood =
transfusion. A reply from the CMO has been received. All of this =
information can be found in the news archives on the MEA website.
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. Data has =
been collected on over 70 patients as part of the clinical cohort study. =
The assessment protocol has been refined and tested on controls and the =
first patients should be going through assessments before the end of the =
year. 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 been published in the open access scientific journal, =
BMC Medical Genomics. Details can be found on the MEA website: =
http://www.meassociation.org.uk/content/view/902/ Although RRF funding =
has now finished, we continue to remain in close contact with Professor =
Gow and Dr Suzanne Hagan regarding further work in this important area.
RRF: Post-mortem tissue bank feasibility study CS reported on the =
final meeting in October of the current Feasibility Steering Group that =
is examining various aspects of how an ME/CFS specific =
tissue/post-mortem bank could be set up here in the UK. Steering Group =
members discussed a draft in progress of the report - which should be =
completed and made available by the end of the year. The RRF will be =
co-funding (with Action for ME) the second part of the feasibility =
study. This will start in January 2010 at an overall total 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
ME Observatory Steering Group CS reported on a Steering Group meeting =
that took place on 31 October. Work on all the various ME Observatory =
studies is proceeding to plan with several research papers being =
prepared or submitted for publication. The meeting also discussed the =
various options for continuing some of the key work being done by the =
MEO - the Disease Register in particular, which now has around 500 cases =
on it - once funding from the Big Lottery Fund finishes in 2010. A =
Dissemination event is being planned for 2010. The next ME Observatory =
meeting will take place in February 2010
Medical Research Council (MRC) Expert Group on ME/CFS Research CS =
reported on the two day research workshop being held on 19 and 20 =
November. More details on this meeting can be found in the August and =
November issues of ME Essential.
Diagnostic tests Trustees held further discussions on 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 the mitochondrial test has now been =
discussed with a research group. However, a decision is being deferred =
in view of the fact that some RRF money may need to be diverted to XMRV =
research. 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/
Information on the work of the RRF can be downloaded from the research =
section of the MEA website.
SCOTTISH MATTERS
ED 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 =
considerably delayed. =20
The current situation is that the Scottish Good Practice Statement =
(SGPS) for GPs has been sent to medical stakeholders for further =
comment. This has now been received and discussed. It is understood =
that an indication of the new timetable for rolling out these two key =
Scottish initiatives should become clearer at the next Cross Party Group =
meeting in Edinburgh on Wednesday 18 November.
OTHER ME/CFS MEETINGS
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 expressing =
our concerns was made to the organisers.. We hope to have some feedback =
on what happened at the next Forward ME Group meeting.
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 =
continuing 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. This initial feedback was passed to the Rt Hon Yvette =
Cooper during the APPG meeting in October. We are still keen to hear =
from anyone else who is trying to claim ESA.
Trustees held a further discussion on 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 for those aged 65 and =
above. However, it is now clear from ministerial statements that DLA =
for the under 65s is no longer under threat. . MEA trustees agreed to =
oppose any proposal relating to DLA and the over 65s and a more detailed =
response to the Green Paper has been prepared by NR and sent in. A copy =
of our response will appear on The MEA website shortly. The MEA is very =
grateful to everyone who responded to our request to send in their views =
on the Government's proposed changes to social care services. This =
feedback has 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 by JT 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 still =
proceeding. 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 statistical analysis and comment, in the form of a report =
that can be given to health professionals, NHS administrators etc. We =
are aiming this will be ready for publication in 2010.
MEA LITERATURE
A new MEA information leaflet on Employment and Support Allowance (ESA) =
is currently being prepared by MD.
A new MEA information leaflet on Cognitive Dysfunction will appear in =
the November issue of ME Essential.
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 MEA leaflet on New and Experimental Treatments will shortly be =
updated.
The October 2009 updated version of 'ME/CFS/PVFS - An Exploration of the =
Key Clinical Issues' is now back from the printers. This 36 page =
edition contains references to all new research and treatment =
developments up to October 2009, including a prominent boxed section on =
the XMRV research findings. The MEA medical guideline is therefore the =
only substantial publication of this nature covering research, clinical =
assessment and management to also include XMRV research. The new =
edition is now available to purchase from the MEA.
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 November issue of ME Essential magazine, or by phoning Head Office =
on 01280 818064/818968.
MEA WEBSITE
With the help of RO trustees devoted a considerable amount of time on =
various matters relating to The MEA website.
Trustees agreed to develop an on-line facility for anyone who wishes to =
join the MEA, or renew their subscription, via the website. Our aim is =
to then follow this up with a facility to purchase MEA literature and =
merchandise on-line.
The regular on-line survey feature remains very popular. Topics =
surveyed so far include public opinion on reactions to flu vaccination =
(November 2008); the NICE guideline on ME/CFS (December 2008); attitudes =
to post-mortem research (February 2009); GP skills and knowledge (March =
2009); how much people have spent on services/treatments outside the =
NHS (May 2009), Probiotics (August 2009). The current (November) =
question relates to public reaction to the XMRV research findings. =
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. =
The changeover is being carefully monitored and does not appear to be =
causing any problems
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 the November issue of ME Essential, which is likely to be =
a new record size containing 52 pages. This issue will include an =
article on the gene expression research that has been funded by the =
Ramsay Research Fund. We are aiming for publication in the week starting =
23 November.
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 free =
car parking facilities right outside.
DATE OF NEXT BOARD MEETING
Provisionally fixed for 18 and 19 January 2010
MEA website: http://www.meassociation.org.uk
Prepared by Dr Charles Shepherd, Trustee
ENDS
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