Summary of the MEA Board of Trustees meeting, November 2010

This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees.

These meetings took place at our Head Office in Buckingham on Monday afternoon, November 15th and on Tuesday morning, November 16th.

Informal discussion on some of the topics also occurred on the Monday morning.

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.

Where appropriate, there is background information relating to the issue being discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman

MEA Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO)

Resignation:

Mark Douglas resigned as a trustee on 1 November 2010.

FINANCES, ADMINISTRATION, PREMISES AND STAFF

ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of September 2010.

There has been a persisting drop in some key areas of income during the first nine months of 2010 when compared to the same period in 2009 – unrestricted donations, gift aid and bank interest in particular. As a result, general expenditure is continuing to run ahead of unrestricted income and we are having to dip into our reserves to cover the shortfall.

Trustees spent a considerable period of time reviewing the various options for ‘balancing the books’ as we have a duty to run the MEA in both a business-like manner as well as a charity. It was eventually decided to give this matter some further consideration and review the situation in January when we have the figures for the full financial year.

Income from fundraising has shown a slight increase over the same period in 2009, and with membership fees remaining static this is one area where trustees feel that a significant increase in income could and should be achieved. Maya Thomas, who is our new part-time fundraising assistant met with trustees and summarised what she has been doing since being appointed in October.

There has also been a welcome and significant increase over the past year in the ring-fenced funding held by the Ramsay Research Fund.

Trustees reviewed the results of changes in banking arrangements, aimed at improving interest received on deposit accounts, that have been carried out in the past few months in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.

Trustees passed on their best wishes to Lucy Kingham at Head Office – whose baby boy arrived in October – and thanked Toni Archer, our new temporary member of staff who has quickly settled in to cover Lucy’s maternity leave.

Christmas and New Year arrangements: The MEA office will be closed from Friday 24th December till Tuesday 4th January 2011 Information about the ME Connect service availability will be placed on the website when finalised.

MEA TRUSTEES

Trustees thanked Mark Douglas for all the work he has done for the MEA over the past four years – especially in the area of fundraising. Mark resigned as a trustee on November 1st.

Following the trustee elections we are able to consider appointing some 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. We are particularly keen to hear from anyone with either management or accountancy skills. In order to proceed with an application, non-members would have to become members of the MEA. An informal discussion can be arranged before any commitment is made.

FUNDRAISING INITIATIVES

The MEA has to raise funds on top of membership subscriptions, which currently only provide around half of the general income that is required to fund the basic running of the charity and Head Office administration (including administration of the Ramsay Research Fund). We are also facing a situation whereby people are reducing donations to the whole charity sector. At the same time, demand on support and information services is increasing, especially in relation to benefit and employment information now that the welfare/benefit reforms and difficulties associated with the introduction of the ESA are taking effect. Trustees and staff therefore have to devote a significant part of their time to boosting fundraising activities in order to maintain our current level of services and research activity.

Northern Ireland fundraising for Ramsay Research Fund
Mid Ulster Vintage Vehicles Tractor and Car Club: Sponsored trek from Moneymore to Castlerock-Limavady:

The Mid-Ulster Vintage Vehicles Club’s 100-mile tractor and car trek has raised over £28,000 for the Ramsay Research Fund. The event started in Moneymore on Saturday 23rd July and finished the following day in Castlerock-Limavady. A tremendous effort has been put in by the O’Neill family – father John, sons Ronald and Richard and daughters Jacqui and Fiona. Following a request from the organisers, TB and CS travelled to Northern Ireland in September for the presentation ceremony. More information on the presentation, including a photo of the event, can be found in the November issue of ME Essential magazine.

2010 London Marathon:

The MEA paid for two guaranteed places in the 2010 London Marathon – so we had runners taking part as well as several other people running who raised money for The MEA. We would welcome offers from anyone who wants to raise funds in 2011 but we will not be paying for any guaranteed places next year.

Amazon Walk to raise research funds for an ME/CFS tissue and post-mortem/brain bank:

BS updated trustees on the various lectures and media work that Ed Stafford has been carrying out following completion of his epic Amazon Walk. Ed walked solidly for 859 days and covered around 6,000 miles. He is the first person to carry out what has been an outstanding physical and mental challenge and he will quite rightly enter the history book of hazardous expeditions. The most recent accolade is being made a Fellow of the Royal Geographical Society.

On his return in early August Ed appeared on a number of radio and television programmes – including GMTV, BBC Breakfast Time and the BBC One Show – and his story has been given extensive coverage in the UK and international press. A full summary of the international media coverage can be found on the MEA website news section archives. Ed’s progress can still be seen on his Amazon Walk blog – http://www.walkingtheamazon.com

Trustees discussed a number of ideas for a Ramsay Research Fund fundraising event in early 2011.

One of Ed’s first talks on the Amazon expedition was given to a meeting of the Transglobe Expedition Trust at the Royal Geographical Society in November, where he was joined by the distinguished explorer Sir Ranulph Fiennes and traveller Michael Palin.

Ed Stafford still has a fundraising page for MEA/RRF research at http://meassociation.workwithus.org/Fundraising/Donate.aspx?page=1307 Around £8000 has been raised so far for the Ramsay Research Fund

Vegepa for ME scheme:

The Vegepa for ME Scheme is now in partnership with the ME Association’s Ramsay Research Fund to run alongside their long-standing enterprise with ME Research UK. From August 2010, the scheme, which has donated over £36,000 since it started up in 2006, has been raising money for crucial biomedical research undertaken by both of these ME charities. The Vegepa for ME Scheme, devised and run by Lynne Kersh, mother of a daughter with long-term ME, has a secure website which sells clinical-grade, patented Vegepa and its various sister products. More information can be found on the MEA website and in the November issue of ME Essential.

MEA Adventure Challenges 2011:

We have arranged for two challenges for more adventurous supporters next year.

The first will be a 20km trek, including an ascent of Scafell in the Lake District on 24-26 June:
http://www.adventure-cafe.com/Content/ForeignAdventure/ForeignAdDetail.asp?aid=1\193302308&org=1288864979&stat=0)

The second is a bike ride through Tuscany on 7-11 September:
(http://www.adventure-cafe.com/Content/ForeignAdventure/ForeignAdDetail.asp?aid=\1216579323&org=1288864979&stat=0)

We will shortly have a brochure about these events available for downloading at the website.

Give A Car:

If you have an old banger that you want to get rid of, let GiveaCar Ltd take the strain and arrange for it to be collected. You will be making a donation to the MEA in the process – whatever state the car is in.
Fill in the form here – http://www.giveacar.co.uk/donate-a-car-to-charity/the-me-association

MEA website shopping:

This facility on the MEA website home page provides a direct link to well known shops and on-line stores. Purchasing goods on-line from companies such as John Lewis, M&S, and Amazon via the MEA website is simple and we receive a commission of up to 15% from the shop at no charge whatsoever to the purchaser. Please give it a try! Registering only takes a few seconds on the Easyfundraising.com website.

Mobile phone and ink cartridge returns and trolley coins:

Returns of ink jet cartridges continue to be a very successful source of income – so please keep sending them in. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website or the Order Forn 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 and mobile phones can be ordered using the literature order form.

Christmas cards:

We have three cards for sale this year – details and pictures in the November issue of ME Essential magazine.
A pdf order form can be downloaded from http://www.meassociation.org.uk/?page_id=1257

Blue ribbons for ME Awareness:

These can be obtained using the pdf Order Form on the MEA website. Single ribbons cost £1 with a discount for bulk orders over 20.

Fundraising information:

As reported in Finance, we have a new part-time member of staff, Maya Thomas, who is dealing with fundraising administration and support. Please contact Maya if you have any ideas for a fundraising event that you want to discuss. Fundraising leaflets and a fundraising pack are available for use at events and for approaches to sponsors and requests for donations. Free copies can be obtained by contacting Maya Thomas by email (maya_mea@talktalk.net or by phone (01908 310052 between 9.30 and 17.00 Monday to Friday).

PARLIAMENTARY MATTERS: APPG on ME

A short inaugural meeting to set up a new APPG on ME was held on 8 June. Those present agreed that David Amess MP should take on the role of temporary Chair. Other officers elected at this meeting: Annette Brooke MP (Vice Chair), John Leech MP (Secretary) and Martin Vickers MP (Treasurer). A copy of the Minutes for this meeting can be found in the July issue of ME Essential magazine and on the MEA website.

CS reported on the first full meeting of the new APPG on ME, which had taken place at Westminster on Tuesday 9 November. The APPG parliamentarians decided that this should be a closed meeting – so attendance was restricted to MPs, members of the House of Lords and the APPG Secretariat (CS from MEA and Sir Peter Spencer from AfME). The decision to hold a closed meeting was taken by the parliamentarians – not the Secretariat. The MEA recognises that members of the public who attend these meetings are in effect guests of the APPG and that confrontational or time-wasting interruptions are unacceptable. We do, however, feel that members of the public, along with charity representatives, make an important contribution to the work of the APPG. The MEA will therefore continue to argue that the new group must allow some form of public presence at future APPG meetings.

The main item on the administrative agenda was a discussion on how the new APPG will operate during this parliament.

The main item on the ME/CFS agenda was the subject of DWP benefits.

Other subjects discussed included the possible revision of the NICE guideline, the research priority recommendations from the MRC Expert Group on ME/CFS research, XMRV research and the Lightning Process trial. The parliamentarians decided that the next meeting will occur in early 2011.

More information on this meeting, along with the minutes, can be found on the MEA website:
http://www.meassociation.org.uk/?p=2869 (background) http://www.meassociation.org.uk/?p=3000 (minutes)

CS will not be preparing informal summaries for APPG meetings that are closed to the public.

The current list of members of the new APPG can be found on the MEA website.

House of Commons Early Day Motion (EDM) on ME Research:

More information on this EDM, which has now been signed by over 70 MPs, can be found here: http://www.meassociation.org.uk/?p=2403

APPG Inquiry into NHS Services:

A paper copy of the final report has been added to the MEA literature list (as a free item) in ME Essential. The report can also be downloaded from the MEA website or the APPG website: http://www.appgme.org.uk

PARLIAMENTARY: Countess of Mar’s FORWARD ME Group

CS reported on the meeting that had taken place at the House of Lords on Tuesday 26 October. Topics discussed included DWP benefits, Research (Lightning Process trial; MRC Expert Group, Dundee research on children, neuroendocrine testing and XMRV), the NICE guidelines review and links to other neurological groups The minutes for this meeting will be posted on the Forward ME Group and MEA websites once they have been agreed. In relation to the ethics of the Lightning Process trial, the Countess of Mar tabled a parliamentary question in the House of Lords: http://www.meassociation.org.uk/?page_id=1685

The next meeting is planned for December 14th when we hope to have a presentation from Professor Malcolm Harrington, who is carrying out the independent review into the ESA Work Capability Assessment. We are also hoping to have Dr Jane Rayner, from the tribunal service (which hears DWP benefit appeals), as our speaker at the meeting in January 2011.

The Forward ME Group website: http://www.forward-me.org.uk has information about the group and archives of minutes from past meetings, including a detailed summary of the presentation on benefit issues (ICB and ESA in particular) from Dr James Bolton, Deputy Chief Medical Adviser at the DWP, to meeting that took place last year:

DWP BENEFIT STRATEGY

Trustees discussed the current MEA strategy regarding benefit problems, the changeover from ICB to ESA that started in pilot form in October, and Professor Malcolm Harrington’s Independent Review of the Work Capability Assessment. A copy of the MEA submission to this review can be found in the November issue of ME Essential and on the MEA website: http://www.meassociation.org.uk/?p=1639

The MEA did not produce an immediate website response to the most recent government proposals for benefit cuts and changes because we are currently considering the best way to try and persuade the coalition government to make changes in their very drastic proposals – which are going to cause major problems for people with ME/CFS, especially the changeover from ICB to ESA which will rapidly gather pace as from Spring 2011.

CS discussed benefit issues and cuts at a Forward ME Group meeting with the Countess of Mar at the House of Lords on Tuesday 23 October.

David Amess MP, the new Chair of the APPG on ME at Westminster, also agreed to include benefits as a priority item when the APPG held its first meeting on November 9th – despite the fact that the top item in our website poll for the APPG was XMRV research. The most effective way forward here may be through a joint initiative from all the medical charities representing people with serious long-term disabilities. We are also considering the content of a letter to MPs which would deal with benefits and coincide with the next meeting of the APPG on ME. .

NICE GUIDELINE REVIEW

CS reported on his correspondence with NICE regarding the proposal to review this very controversial guideline on ME/CFS in late 2010. More information on the current situation can be found on the MEA website: http://www.meassociation.org.uk/?p=975

Despite the fact that it appears that a review of the guideline will not now take place in 2010, The MEA has replied to NICE to say that we believe a review should take place. A copy of our response can be found here http://www.meassociation.org.uk/?p=2955

Trustees also agreed to write to the Chairman of NICE to explain in more detail why we believe that the current guideline is not fit for purpose and that the recommendations regarding CBT and GET must be reviewed.

RESEARCH AND RAMSAY RESEARCH FUND (RRF)

RRF: XMRV and MLV:

Trustees discussed the latest XMRV research results from validation studies that have been reported in the medical journals and the outcome of meetings that CS has been having with UK virologists on this subject. Our latest XMRV summary can be found on the MEA website: http://www.meassociation.org.uk/?p=2240 and in the November issue of ME Essential.

The role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate the American findings, or do other relevant work on XMRV was discussed. CS reported on the various contacts and discussions he is continuing to have with virologists on how best to take this research forward in the UK – including the current initiative to re-test anyone here in the UK who has sent a blood sample to the US laboratory.

Following our correspondence with Sir Liam Donaldson, the previous Chief Medical Officer, the current ban on blood donation from people with symptomatic ME/CFS has been extended to include anyone with a past history of ME/CFS as from 1 November. This ban will cover the whole of the UK. The CMO correspondence can be found on the MEA website. We shall also be monitoring the implementation of this new guidance.

RRF: Professor Julia Newton et al, University of Newcastle:

Assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The initial assessment procedures include testing autonomic nervous system function, muscle performance, exercise physiology and body composition (ie the amount of fat and muscle present). The second phase of the study will involve the use of magnetic resonance spectroscopy to assess the way in which their muscle is producing energy and lactic acid. Further information on this study can be found in the August 2009 issue of ME Essential magazine.

RRF funding = approximately £13,800.

Newcastle University Fatigue Research Symposium:

CS met Professor Newton at a research meeting that was held at the University of Newcastle in June. There were presentations from Professor Newton and colleagues on muscle and autonomic dysfunction research involving people with ME/CFS. The meeting focussed on muscle research and considered the role of fatigue in other medical conditions such as HIV and other infections, mitochondrial myopathies, primary biliary cirrhosis and Sjogren’s syndrome. The session on HIV and fatigue covered the important issue of muscle mitochondrial damage following antiretroviral therapy (AZT) – something that is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July issue of ME Essential magazine and on the MEA website: http://www.meassociation.org.uk/?p=975

An abstract from a new research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle (= muscle that moves bones) can be found on the MEA website. An abstract from another recent study from this research group, relating to abnormalities in pH (ie acid) handling by skeletal muscle, can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2009.02160.x/abstract

RRF: Factors involved in the development of severe ME/CFS:

The results of this questionnaire-based research, carried out by Dr Derek Pheby and Dr Lisa Saffron, and funded by The ME Association, have been published. A link to the paper, can be found on the MEA website: http://www.meassociation.org.uk/?p=784 There is a vast amount of useful information in this paper for anyone with severe ME/CFS, especially those who are involved in disputes over benefits, social care etc.

RRF funding = approximately £30,000.

RRF: Gene expression research:

Results from the study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, were published in the open access scientific journal, BMC Medical Genomics: http://www.meassociation.org.uk/?p=642

Although RRF funding has now finished, we remain in contact with Professor Gow and colleagues in Glasgow regarding further work in this important area.

RRF funding = approximately £38,000.

RRF: Post-mortem tissue bank feasibility study:

CS updated trustees on phase two of the co-funded feasibility study into setting up an ME/CFS blood bank (biobank) and post-mortem tissue bank. This has included consultation with relevant experts and a focus group meeting which allowed a group of people with ME/CFS to freely express their views on the various ethical, legal and practical issues surrounding tissue and post-mortem research. Work on phase two commenced in February 2010 and is now nearing completion. This work is being carried out by Dr Luis Nacul and Dr Eliana Lacerda at the London School of Hygiene and Tropical Medicine. An article summarising all the various MEA post-mortem research initiatives that are taking place can be found on the research section of the MEA website. An article on phase two of this research appears in the February 2010 issue of ME Essential.

The results from four post-mortems will be presented and discussed at an international research conference in December.

A paper describing the way in which we are hoping to set up a tissue bank has now been published in the Journal of Clinical Pathology.
An abstract can be found here: http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032

RRF funding = approximately £14,000

Patient Database:

Trustees agreed to co-fund an extension to the work that has been carried out by the ME Observatory in setting up a Patient Database that includes people with ME/CFS who have been recruited from primary (ie GP) care, along with a severely affected group that have been recruited via the database held by the charity CHROME. It was felt that it is essential to keep the patient database up-to-date because people from this well-characterised clinical group could then be asked to donate blood when, as hoped, we are able to continue to move forward in 2011 with the establishment of a pilot biobank that will then collect and hold blood samples for research purposes.

RRF Funding = approximately £5,000

Donating blood and tissue samples to ME/CFS research:

We are aware that people with ME/CFS are very keen to donate blood samples for research studies, and in some cases tissue samples after death. Unfortunately, we cannot accept any blood samples until a biobank facility has been set up in a UK hospital or research institute – which we hope will occur in 2011. As far as tissue and post-mortem samples are concerned, the November issue of ME Essential magazine contains information that can be placed in your Will, or as a Codicil to a Will. This gives permission for tissue to be taken along with further information on what we may be able to do with tissue donation prior to a post-mortem tissue bank being set up.

ME Observatory Steering Group:

The final stages of this work are proceeding to plan with several research papers being prepared or submitted for publication. The last MEO meeting discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular – when Lottery funding ended in September. The Disease Register now has around 500 people with well characterised ME/CFS – new cases being recruited from primary care and others with chronic severe disease via the CHROME database – and it is hoped that this important work will continue and be of use to the researchers in due course.

The ME Observatory arranged a half day Dissemination Conference in London that covered issues relating to work, welfare and DWP benefits on Saturday 25th September.

Two MEO workshops also took place on 28 September (in Sheffield) and 29 September (Birmingham).

The last MEO Steering Group meeting was held on September 9th.

An abstract from the most recent MEO research paper to be published can be found here: http://www.biomedcentral.com/content/pdf/1471-2296-11-89.pdf

Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research:

Two follow up meetings relating to the MRC research workshop that was held in November 2009 have now been held. Summaries of the presentations and slides used at the November workshop are available via the MEA website. http://www.meassociation.org.uk/?p=935

Further information on the work of the MRC Expert Group can be found on page 12 of the May issue of ME Essential.

We are now awaiting a statement from the MRC as what action they propose to take on the recommendations for research priorities that have been made by the Prioritisation Group at the meeting on 4 June, that was chaired by Professor Hugh Perry.

Minutes for this meeting can be found here: http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174

Fortunately, there were no major reductions in government funding for scientific research in the Chancellor’s October spending review statement.

Lightning Process:

Trustees held a further discussion on a controversial new research study that has been announced into the use of the Lightning Process. Costing £164,000, the feasibility study will investigate how children and adolescents could be involved in a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns and objections have been raised about the possible use of children and adolescents in this type of study and we are discussing these concerns with our colleagues in other ME/CFS charities. As a result of these discussion The MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern: http://www.meassociation.org.uk/?page_id=1341

This statement was sent to the Department of Health with a request that it should be forwarded to the ethics committee that is dealing with the application but the DoH refused to do so. Following a Freedom of Information request we obtained the identify the ethics committee that was dealing with the application and our statement was then forwarded to the Chairman. Unfortunately, due to initial secrecy surrounding the identity of the ethics committee, the information did not reach them till after the application had been approved.

We have also passed our concerns to the National Research Ethics Service, who are considering whether the local ethics committee should review their decision. More information can be found on the MEA website: http://www.meassociation.org.uk/?p=2720

A BBC radio discussion from Thursday 11 November about the Lightning Process – which included contributions from Professor Leslie Findley, Dr Charles Shepherd and Phil Parker and was chaired by Anne Diamond – can be heard on YouTube: http://www.meassociation.org.uk/?p=2921. A transcript is also available on the MEA website.

FINE AND PACE Trials:

Responses to publication of the results from the FINE trial have appeared on the BMJ website, including one from The MEA. Trustees discussed the way in which results from the MRC funded FINE and PACE trials are likely to affect any future review of the NICE guideline on ME/CFS. Responses to the results of the FINE trial can be accessed via the MEA website: http://www.meassociation.org.uk/?p=925

We understand that results from the PACE trial are likely to be published in the medical journals around about the end of the year.

Sleep Disorders Conference:

CS has been invited to attend an important clinical and research conference in London in December that will be discussing all aspects of sleep disorders.

New research proposals:

Trustees discussed three new research proposals that have been submitted to the RRF for funding – two of which link in with the list of biomedical research priorities that have been identified by the MRC Expert Group on ME/CFS research.

Ramsay Research Fund Grant Application Form:

Trustees agreed to update the current RRF application form and make it available for on-line submissions.

The MEA is now in a position to fund new research in addition to current commitments and the funding that has been set aside to help set up a UK tissue and post-mortem bank. Information on the work of the RRF can be downloaded from the research section of the MEA website.

SCOTTISH MATTERS

Following on from summaries of previous Board meetings, the Scottish Health Department has now published their clinical guidance on ME/CFS for doctors in Scotland – a document that had originally been based on the MEA purple booklet for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues. Publication of the Scottish Public Health Network Needs Assessment has also taken place

An MEA statement can be found on the MEA website: http://www.meassociation.org.uk/?p=1641

MEA ANNUAL MEDICAL MEETING IN CARDIFF

CS and TB reported on another very successful ‘Question Time’ meeting that was held in conjunction with WAMES in Cardiff on Saturday October 23rd. This is an open and free meeting in an ‘ME Question Time’ format that we rotate around the country each year.

Panel members this time included Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA).

More information on the meeting can be found in the November issue of ME Essential magazine.

Trustees discussed possible locations and funding for this event in 2011. If any local groups are interested in co-hosting this meeting please let us know.

MEA LITERATURE

A new Management File on the subject of XMRV and MLVs appears in the November issue of ME Essential.

The MEA now has almost 70 leaflets and booklets covering all aspects of research, diagnosis and management.

The MEA Management Report contains the final 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. The report was distributed free as part of the May issue of ME Essential. It can also be downloaded from the MEA website – where over 3,000 people have already viewed the report. Extra paper copies can be obtained from the MEA at a cost of £1. This research was funded by the Ramsay Research Fund.

CS and TB reported on the new (2010 – 2011) edition of ME/CFS/PVFS – An Exploration of the Key Clinical Issues. This is an expanded and updated sixth edition and we hope to have copies available for sale in mid-December.

MEA literature can be obtained using the website pdf ORDER FORM: http://www.meassociation.org.uk/wp-content/uploads/2010/09/MEA-Order-Form-November-2010.pdf 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

Trustees discussed the new MEA website, which came into operation in October. Public reaction so far has been very favourable and we are dealing with a significant increase in requests for information as a result.

A number of important changes relating to how to contact various people and departments at the MEA by email will take place on Monday 22 November. Further minor changes and updating of information will continue to occur.

The monthly on-line website survey feature remains very popular. Previous polls have asked about 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), Vaccines as trigger factors (May 2010) and opinions on DWP medical assessments that are carried out by ATOS. The current (November) question asks for opinions on how the media has dealt with ME/CFS stories so far this year . Results from all the previous on-line surveys can be found on the MEA website.

If anyone has any suggestions for future website polls please let us know.

ME CONNECT

Trustees reviewed the administration of telephone calls and emails received by ME Connect, our information and support service. Up to the end of September 2010 the service dealt with 1692 emails, as well as 1158 phone calls up to the end of August – a total of nearly 3000 enquiries so far this year.

A regular audit of telephone response times indicates that almost all calls are being answered either immediately or within a few minutes. However, there will always be occasions when a delay is inevitable due to the volunteer on duty having to deal with a difficult call.

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 keen to hear from anyone who would like to join ME Connect as a volunteer. If you are interested please contact the MEA via meconnect@meassociation.org.uk

ME ESSENTIAL MAGAZINE

TB reported on the November issue of ME Essential and plans for the February 2011 issue.

The November issue will be mailed out at the beginning of next week (ie 22 November). Copy for the February issue must be with TB by the end of December.

The Editorial Board is always happy to receive constructive comments about any aspect of the magazine.

MEDIA WORK: NEW SHORT FILM ON ME : ‘ALL ABOUT ME’

part 1: http://www.youtube.com/watch?v=dWp5W7kHEVo&NR=1 and part 2: http://www.youtube.com/watch?v=-XhCekXdTBY&NR=1

This is a new short documentary film (in two parts) about Laura Fursland, a very promising young music student who developed ME following an episode of glandular fever, with complications, at the age of 18. The film deliberately concentrates on Laura’s story and how it has affected all aspects of her life – in particular how her life is now “on hold” and her plans to go to university to study music.

The medical input – covering key symptoms, possible causation, drug treatments and the losses/social isolation of living with ME at this age – is briefly inserted at various points. The film is not intended to focus on the medical and science behind ME/CFS.

This film was made by Teesside University with information being provided by the MEA.

DATE OF NEXT BOARD MEETING

Provisionally fixed for Monday and Tuesday, 17th and 18th January 2011.
_______________________________________________________________________________________________________________________________________

Summary prepared by Dr Charles Shepherd, Trustee
18 November 2010