Summary of MEA Board of Trustees’ meetings on 9 and 10 November 2009

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon, 9 November 2009 and on Tuesday morning, 10 November 2009.

 




Informal discussions also took place on a number of issues on the Monday evening. Please note that this is a summary of the two Board meetings – not the official minutes. The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer

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

Apologies:

Gill Briody (GB) – Company Secretary

FINANCES, STAFF AND PREMISES

 

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.

 

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. 

 

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 11 September 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 here  An MEA press release on the event can be found here 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  The Daily Mail, Hello! and Sun recently carried features on the walk.

 

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 Around £8,000 has been raised so far and Ed hopes to raise around £20,000.

 

‘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 £7,000.  More information can be found here.

 

Eric Smart’s Sponsored Cycle ride from Aberdeen to Australia
  Eric Smart is extending his cycle ride to include New Zealand, the USA and Ireland and has set himself a target to raise £12,000 for The ME Association. There were features on Eric in the Scottish Sun  and in the Scottish Daily Mail.  If you would like to sponsor Eric, please click on here.

 

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.

 

Christmas cards
  These are now available – two separate packs of ten, priced at £3.50p 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 or the literature order forminsert 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.

 

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 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 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 has information about the group and archives of minutes from past meetings:

 

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..

 

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. 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 £28,000. 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 (MEO)  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.

 

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.

 

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 closed on 13 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.

 

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 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