MAY BE REPOSTED
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 September 5th and Tuesday morning, September 6th 2011.
Informal discussion on some of the topics also occurred on the Monday evening.
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 some background information, and/or an MEA website link, relating to the issue that was discussed.
Ewan Dale (ED) – Honorary Treasurer
Rick Osman (RO)
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman
Martine Ainsworth-Wells (Associate Trustee)
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Maya Thomas (MT) – Fundraising (Monday only)
Neil Riley (NR) – Chair
In the absence of Neil Riley, the meeting was chaired by Ba Stafford.
FINANCES, ADMINISTRATION, PREMISES AND STAFF
ED updated trustees on the current financial position. This was followed by a discussion on the monthly management accounts for the period up to the end of July 2011.
Despite the considerable on-going difficulties faced by charities in the current economic climate, it is encouraging to note that our general income continues to remain slightly ahead of expenditure so far this year. Trustees once again considered options for ‘keeping the books in balance' during these difficult times as we have a duty to run the MEA in both a business-like manner as well as a charity.
There has also been a small increase in funding held by the Ramsay Research Fund so far this year.
Trustees reviewed the on-going changes to banking arrangements which are aimed at improving the interest received on deposit accounts. Major changes were carried out during 2010 in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.
ED reported on arrangements for reporting and sending in the 2010 year end accounts to Companies House.
MEA TRUSTEES and 2011 AGM
During Monday and Tuesday, trustees conducted interviews with three people who have expressed a serious interest in becoming MEA trustees.
Trustees finalised planning arrangements for the 2011 AGM and the 2011 trustee elections.
Trustees standing for election this year are Neil Riley and Rick Osman.
The AGM will be held in Buckingham on Tuesday 15th November.
More details on the AGM and the trustee elections (including a voting paper) will appear in the September issue of ME Essential.
FUNDRAISING INITIATIVES and DONATIONS
The MEA has to raise a substantial amount of funds on top of membership subscriptions – which currently only provide around half the general income that is required to cover the basic running costs 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 steadily 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. The changeover from ICB to ESA is adding to this workload.
Trustees and staff therefore have to devote a significant part of their time to fundraising activities in order to maintain our current level of services and research activity.
Maya Thomas, fundraising assistant, reported on current and future fundraising initiatives when she attended the meeting on Monday morning.
2011 Marathons and 2012 Bupa Marathon
The number of sponsored events continues to steadily increase and several people have taken part in marathons, or half marathons, during 2011 in order to raise money for The MEA.
We have booked eight confirmed places in the 2012 BUPA run, which will take place in Central London on May 27th 2012. We already have eight firm expressions of interest and two people will be paying their own way. More information will appear in the September issue of ME Essential.
While runs, bike rides and other sporting events are very effective ways for carers, relatives and friends to raise money for The MEA, they are clearly not appropriate for people who are ill. So we always welcome the views of the membership on how people with ME/CFS might play a more active role in fundraising. Trustees discussed some of the current suggestions that have been received.
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 – www.giveacar.co.uk/donate-a-car-to-charity/the-me-association
We have now taken delivery of flatpack collection boxes for your loose change. These will be advertised in the magazine and on the website and will be sent out free of charge
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 Argos, John Lewis, M&S, and Amazon via the MEA website is quick and easy. In addition, we receive a commission of up to 15% from the shop at no charge whatsoever to the purchaser. So 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 and old mobile phones continue to be a successful source of income – so please keep sending them in. 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 September 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 or contacting Head Office.
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.
This year's cards are now available to purchase either via the website or in the September issue of the magazine. To view the downloadable flyer advertising them, please click HERE.
The Big Give ‘Christmas Challenge'
The MEA will be taking part of this event – which involves matched fundraising activities. Just over £2000 has already been pledged. Funds raised will help to support volunteer training for ME Connect. More information will appear in the September issue of ME Essential.
Winners of raffle prizes will appear in the September issue of ME Essential.
MEA Facebook fundraising announcements:
Trustees agreed that fundraising announcements will, in future, be restricted to those from ME charities/organisations that are raising money for the MEA or for the Ramsay Research Fund.
Maya Thomas is now 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: email@example.com or by phoning 01908 310052 between 9.30 and 17.00 Monday to Friday.
PARLIAMENTARY MATTERS: APPG on ME
CS reported on the final (June 22nd) meeting of the All Party Parliamentary Group (APPG) on ME for this session of parliament. The main topic for discussion was issues relating to children and adolescents – child protection disputes in particular. Jane Colby (Tymes Trust) and Mary-Jane Willows (AYME) gave the presentation. This was followed by a wide-ranging discussion covering education, service provision and legal issues. Other topics discussed included an update on benefit and research issues.
Members decided that the process of enlarging the APPG invitation list should continue. As a result, a representative from ME Research UK will now be invited to attend meetings – along with representatives from AYME, Invest in ME and Tymes Trust.
The agenda for this meeting, and a copy of the presentation from the two children's charities, can be found in the June news archive on the MEA website. As soon as we have the minutes, along with a date and agenda for the next meeting of the APPG, this will appear on the MEA website.
The APPG parliamentarians decided that this should again be a closed meeting – so attendance was restricted to MPs, members of the House of Lords, the APPG Secretariat (CS from MEA and Tristana Rodriguez from AfME) and representatives from AYME and Tymes Trust. The decision to continue to hold closed meetings was taken by the parliamentarians – not the Secretariat. While 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 also 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 encourage the reformed APPG to continue to enlarge the public presence at future APPG meetings.
We would like to increase both the membership of the APPG and attendance of MPs at meetings – so please ask if your MP is a member of this group. If not, please try to persuade him/her – by letter or preferably in person at a constituency surgery – to join and attend the next meeting.
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: www.appgme.org.uk
PARLIAMENTARY: Countess of Mar's Forward ME Group
CS reported on the last meeting of the Forward ME Group of charities. This involved a discussion on the results of the PACE trial. The group concluded that the best way forward would be to try and obtain an independent statistical analysis of the results and outcomes.
A copy of the Minutes for this meeting can be found on the Forward ME Group website: www.forward-me.org.uk
The Countess of Mar has asked a considerable number of parliamentary questions in recent months – these can be found in the MEA website news archive – and took an active role in the House of Lords debate on changes to the WCA descriptors.
The Forward ME Group website 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.
WELFARE REFORM: ESA, WCA, DLA and ICB
Trustees reviewed the current MEA strategy regarding all the various benefit reforms that are now taking place, or are due to take place. The main issues currently relate to:
• The changeover from ICB to ESA that started in pilot form in October 2010. This is now gathering pace quite rapidly and is already causing great difficulty for some people with ME/CFS who are claiming ICB when they are re-assessed for ESA.
• The government consultation regarding changes to DLA and its replacement with a Personal Independence Payment in 2013 ED has prepared the MEA response to the government consultation on DLA. This can be found on the MEA website: www.meassociation.org.uk/?p=4612. The Forward ME Group of Charities was approached to help find people with ME/CFS who are claiming DLA and would be willing to take part in a consultation process to assess the possible impact of the changes taking place. The MEA agreed to be involved in this procedure – more information can be found on the MEA website: www.meassociation.org.uk/?p=6632 and in the June issue of ME Essential.
• 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 2010 issue of ME Essential and on the MEA website: www.meassociation.org.uk/?p=1639 CS is a member of a group appointed by Professor Harrington that is revising the WCA descriptors that apply to people with fluctuating medical conditions. Their report on fluctuating conditions and the WCA, which contains some very useful information in relation to ESA applications, can also be downloaded on the MEA website: www.meassociation.org.uk/wp-content/uploads/2011/05/Fluctuating_conditions_report_FINAL-1.pdf
• Fluctuating conditions report and ESA As noted in the last summary,. representatives from five charities – Forward ME Group, Arthritis Care, MS Society, National AIDS Trust, and Parkinson's disease – are working with Professor Michael Harrington on his independent review of the Work Capability Assessment descriptors.The group's report on fluctuating medical conditions and the WCA descriptors has been completed and was very well received by Professor Harrington.As a result, the charities are now meeting with a Scrutiny Group appointed by the DWP in order to reach agreement on a final set of recommendations that will go to Professor Harrington. The aim is to have this work completed by the end of September.
• Benefit review seminar on August 17th CS reported on a seminar on August 17th where Professor Harrington provided feedback on the current state of his review – in particular the implementation by the DWP of his recommendations so far and what work is required to be carried out in future reviews. Key points to emerge from the charity representatives during the course of this discussion included:
• Overall, there is very little noticeable change taking place to the way in which people are being dealt with by the DWP and Atos.
• There is very little evidence of medical reports from claimant's health professionals being obtained or taken notice of – even when they had been obtained.
• Claimants on low incomes cannot afford to pay for medical reports – which places them at a significant disadvantage.
• Those living in areas with no access to specialist referral services are also being disadvantaged when it comes to obtaining supportive medical evidence .
• People are still being rushed through Atos interviews without being listened to.
• Atos reports are still being reported as factually incorrect.
• The Lima computer programme used by Atos during medical examinations is more concerned with functional assessment and describing a typical day at home and not fitness for work.
• People with fluctuating medical conditions do not have ‘typical days'.
• Information provided to medical examiners by Atos is in some cases out of date and inaccurate.
• The CAB representative pointed out that 60% of successful ESA appeals came from claims that had originally been awarded zero points – this indicates a major flaw in the ESA decision making process.
• The DWP needs to define what it means by meaningful work.
• Assessments for patient groups for whom the current WCA process is acknowledged to be flawed (eg ME/CFS) should be suspended until suitable descriptors have been put in place to cover the problems being faced.
• ESA feedback As far as feedback to the MEA is concerned, all the indications are that people are still finding it very difficult to obtain ESA but a significant proportion are having success if they go to appeal. If anyone is applying for ESA, or is involved in the transfer from ICB to ESA, please read our new guidance on how to fill in the complex paperwork and the 10 ‘top tips' on ESA that were in the June issue of the magazine. It's also worth obtaining the fluctuating conditions report – this be downloaded free from the MEA website, or ordered using literature order form in the magazine.
• The decision to bring in changes to the WCA descriptors as from 28th March. Motions in the House of Lords to try and annul the Statutory Instrument that brought in the new WCA descriptors were tabled by both Lord Kirkwood of Kirkhope and the Countess of Mar. This led to a House of Lords debate on Wednesday 16th March. A television recording, and Hansard transcript of the debate, can be found on the MEA website: www.meassociation.org.uk/?p=5180 During the debate Lord Freud made the following very important statement about ESA eligibility criteria in a response to an intervention from the Countess of Mar: “The internal review consulted a range of experts and groups and, as I described just now, tried to reach consensus. Significant concerns were expressed by the groups around the descriptors. I will not go into those because I am short of time, but I can respond to the noble Countess, Lady Mar, on fluctuating conditions. It must be possible for all the descriptors to be completed reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity.”
• Atos medical assessments As part of Professor Harrington's on-going review of DWP benefits, CS was invited to visit an Atos assessment centre in Marylebone, London on June 21st to see how the much criticised LiMA computerised medical assessment process works. A summary of his visit has been sent to the DWP and Professor Harrington.
PACE TRIAL RESULTS
As well as having one of our letters published in The Lancet we have written (along with a group of other ME/CFS charities) to the PACE trial organisers to query a number of aspects of the trial. A copy of this letter can be found on the MEA website: www.meassociation.org.uk/?p=6171.
We also wrote to the Science Media Centre to complain about the way in which the PACE trial results were presented to the media and the subsequent unbalanced press coverage.A copy of this communication can be found here: www.meassociation.org.uk/?p=5041
More information on the PACE trial results, including a copy of the paper and accompanying editorial, can be found in the March news archive on the MEA website.
Following the Scottish parliamentary elections, previous committee members met with Alex Fergusson (former CPG convenor) on Wednesday 15 June in order to liaise with MSPs with the aim of re-establishing the group in the new parliament. A report on this meeting, which agreed to re-establish the cross party group, is on the MEA website: www.meassociation.org.uk/?p=6630
ED reported that the first committee meeting of the reformed CPG will be taking place on Wednesday 7th September. The first open meeting of the CPG will be taking place in Edinburgh on 21 September.
A meeting of the Scottish Neurological Alliance will be taking place on 15 September..
MEA ANNUAL MEDICAL MEETING
This year's ‘ME Question Time' meeting will be held in conjunction with Kirklees Independent ME Support Group in Huddersfield, West Yorkshire on Saturday 8 October. Admission is free and non members are welcome to attend. There is no need to book a place in advance this year.
The MEA annual medical meeting is an open and free meeting in an ‘ME Question Time' format that we rotate around the country each year. Panel members this year will include Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Dr Charles Shepherd (Hon Medical Adviser, MEA), Nigel Speight (Hon Paediatric Adviser, MEA) and Jo Cameron-Symes, chairman of the Kirklees Group.
The MEA pays for the full cost of the venue and any expenses incurred by panel members. All we normally ask from the local group is some practical help with publicity and local administration. If a local ME group would like to work with us on the 2012 event please get in touch.
More details on the Huddersfield meeting will appear in the September issue of ME Essential magazine and on the MEA website.
A new Management File on the subject of Relapses, Exacerbations and Flare Ups will be appearing in the September issue of ME Essential.
We are still in the process of updating our information leaflet covering Travel Insurance and would like to hear about both good and bad insurers when it comes to purchasing travel insurance if you have ME/CFS. We are currently collecting information on life insurance providers.
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 can be downloaded from the MEA website www.meassociation.org.uk/?page_id=1345. Extra paper copies can be obtained from the MEA at a cost of £2.This research was funded by the Ramsay Research Fund.
The 2011 edition of ME/CFS/PVFS – An Exploration of the Key Clinical Issues is a fully updated sixth edition which now includes a full page on XMRV research. Demand is such that we have now ordered a reprint.
A fully revised MEA booklet on filling in the ESA paperwork, which takes account of recent changes to the WCA descriptors, is now available.
MEA literature can be obtained using the website pdf ORDER FORM: www.meassociation.org.uk/wp-content/uploads/2011/06/MEA-Order-Form-June-2011.pdf or the 8-page order form insert in the September issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
Dr Melvin Ramsay's book on the history of ME With stocks now running low, a reprint of this important book describing many of the early epidemics and outbreaks of ME, has been ordered. This book is published by The MEA and only available from The MEA.
Kay Gilderdale book Copies are available on our literature order form. A review of the book appeared in the June issue of ME Essential and also on our website at www.meassociation.org.uk/?p=7844
Trustees discussed some further alterations and additions to the MEA website. Public reaction to the changes so far has been very favourable and we are dealing with a significant increase in requests for information as a result.
RO reported that work on the new on-line shopping facility – which will include merchandise, literature, books and membership subscriptions – is nearing completion and we hope to be able to launch the website shop fairly soon.
The monthly on-line website survey feature remains very popular. Previous polls have asked about attitudes to flu vaccine, post-mortem research; GP skills and knowledge; how much people have spent on services/treatments outside the NHS, vaccines as trigger factors and opinions on DWP medical assessments that are carried out by ATOS. The March question asked for opinions on the outcome of the PACE trial. The June question assessed public opinion on the latest developments relating to XMRV research.The current September question is asking whether people would be willing to donate a blood sample to the new biobank. 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.
Up to the end of 2010, the service dealt with just over 1900 emails and 2900 phone calls – a total of almost 5000 enquiries during 2010.
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 interested, please contact us via firstname.lastname@example.org
ME ESSENTIAL MAGAZINE
TB reported on the September issue of ME Essential and plans for the next issue, which will appear in late December or early January. We are aiming to send out the September issue at the end of the month.
Among the contents for September are a report on the biobank. Medical, benefit and clinical items will cover acne and ME/CFS, cuts to NHS services, DWP Carer's credits, ESA appeals, hand tremor, hypothalamic function, valganciclovir antiviral treatment.
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine as well as contributions.
We are currently working with BBC Alba television in Scotland on an hour-long documentary programme covering various aspects of ME/CFS. CS went up to Glasgow at the end of August and reported that all is proceeding to plan. CS is also working on another BBC programme that is looking at a particular aspect of research.
Trustees also discussed the UK media coverage to the ‘death threats to researchers' story that has taken up so much time and media attention over the past few weeks and the various ways in which the MEA has been asked to respond. We have also been interviewed by a major American media outlet, who are now following up the story.
NEUROMUSCULARSKELETAL FORCE ANALYSER
CS has been invited to attend a demonstration of a new technique for assessing muscle function, strength and fatigue at The Royal Buckinghamshire Hospital.It is claimed that this can produce objective information to help in the rehabilitation of people with neuromuscular disorders (including ME/CFS) as well as the assessment of benefit and insurance claims.
DSM 5 CONSULTATION PROCESS
At their last meeting, trustees discussed and approved a submission from the MEA to go to the American Psychiatric Association. This can be found on the MEA website www.meassociation.org.uk/?p=6619 Since submitting this response, we have not heard anything further.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
RRF: XMRV and MLV: Trustees discussed the latest XMRV research results. With yet more negative XMRV validation studies being published, many virologists working in this area are becoming increasingly sceptical as to whether XMRV is a disease causing infection and whether it is linked to ME/CFS. Here in the UK, many virologists are now accepting the laboratory contamination theory. The MEA takes the view that is still too early to send out the scientific jury. We certainly need to see the results of the Lipkin study – the US government funded study whereby blood samples from 150 people with ME/CFS and 150 controls will be tested blind in three different laboratories – before coming to any firm conclusions about XMRV and ME/CFS. These results are now expected to appear towards the end of the year.
Abstracts from research papers relating to XMRV and ME/CFS can be found in the news archive on the MEA website and some robust discussions on XMRV have been taking place on our Facebook page!.
RRF: Professor Julia Newton et al, University of Newcastle This RRF-funded research involving muscle function in ME/CFS proceeded according to plan during 2010 with assessments being completed on 25 subjects who were recruited via the Northern Regional ME/CFS Clinical Service. The assessment procedures included testing autonomic nervous system function, muscle performance, an exercise physiology protocol, and body composition (ie the amount of fat and muscle present). The second phase of the study involved the use of MRS (magnetic resonance spectroscopy) to assess the way in which skeletal muscle is producing energy and lactic acid during exercise. The results of this RRF-funded research are being prepared for publication.
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: This research meeting included 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 would 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 on the MEA website: www.meassociation.org.uk/?p=975
An abstract from a 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 Professor 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: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: www.meassociation.org.uk/?p=642 RRF funding = approximately £38,000.
RRF: Biobank and Post-mortem tissue bank CS updated trustees on both of these research initiatives.
Biobank: As will be reported in the September issue of ME Essential, a group of three charities – AfME, MEA and MERUK – along with a very generous private donor have finally reached the point where we have agreed a protocol, and raised over £150,000 in funding in order to set up the first biobank for research into this illness. This is a great achievement and once the facility has a collection of stored blood samples these will be made available to researchers who want to look at causation, sub-grouping and treatment. More information on the biobank, including a question and answer item, will appear in the September issue of ME Essential. Information can also be found in the August news archive of the MEA website.
Post-mortem tissue bank: The results from four post-mortems carried out in the UK were presented and discussed at an international research conference in Australia in December 2010. More information, including the conference presentation abstract,can be found in the MEA website report: www.meassociation.org.uk/?p=3765
A paper describing the way in which we are hoping to set up a tissue bank has been published in the Journal of Clinical Pathology. Abstract: http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032
Plans for the post-mortem tissue bank are currently on hold because this will be a far more expensive and time-consuming project to set up.
Trustees agreed at a previous meeting to some further funding to assist Dr Dominic O'Donovan (neuropathologist at Addenbrooke's Hospital, Cambridge) with the virological examination of existing post-mortem material.RRF funding = £500
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 the biobank facility has been set up and is fully established.
As far as tissue and post-mortem samples is concerned, the November 2010 issue of ME Essential magazine contains information that can be placed in a Will, or as a Codicil to a Will. This gives permission for tissue to be taken after death, 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.
Abstracts from two of the most recent MEO research papers to be published can be found here: www.biomedcentral.com/content/pdf/1471-2296-11-89.pdf www.biomedcentral.com/1471-2458/11/402
Conclusions from latter paper covering functional status: ME/CFS is disabling and has a greater impact on functional status and well being than other chronic diseases such as cancer. The emotional burden of ME/CFS is felt by lay carers as well as by people with ME/CFS. We suggest the use of generic instruments such as SF-36, in combination of other objective outcome measurements, to describe patients and assess treatments.
At the moment this is one of the most accessed on-line BMC papers.
Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research
Recommendations for research priorities that were agreed by the Prioritisation Group can be found here:www.meassociation.org.uk/?p=4727
Minutes for the prioritisation meeting can be found here: www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174
The resulting call for new research submissions, along with £1.5 million of ring-fenced funding, relating to the priority list closed on 7 June.
Trustees have already endorsed and indicated a willingness to help co-fund a major biomedical research study that has now been submitted to the Medical Research Council.to link in with their call for ME/CFS studies
CS reported that he has no new information about the research applications that have been sent to the MRC in relation to the £1.5 million of money that has been allocated to research. The timetable for assessing these applications is as follows:
Submission deadline: 7 June 2011
Peer review (external): June 2011 – September 2011
Applicants’ response: October 2011
Prioritisation Panel meeting: November 2011
Applicants receive notification of outcome: November 2011
Awards announced: December 2011
Invest in ME Conference CS attended this meeting in May – a four page report appeared in the June issue of ME Essential.
Netherlands Medical Conference CS spoke at a medical and research conference in Amsterdam on 12th May. There was a very encouraging turnout from doctors who are involved in assessments for benefit, employment and insurance purposes in Holland. All those present received a copy of ME/CFS/PVFS – An Exploration of the Key Clinical Issues, which has now been translated for use in Holland.
RRF: NEW RESEARCH PROPOSALS
Trustees held a further discussion on a revised research proposal that has been submitted to the RRF for funding earlier this year.
The MEA is currently 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.
Research into transcription factors and ME/CFS
A number of difficulties have occurred in relation to the research study into transcription factors that we were due to fund at Glasgow Caledonian University. So this item of research is currently ‘on hold' while discussions are taking place.
Ramsay Research Fund Grant Application Form
A new electronic application form has been completed.
DATE OF NEXT BOARD MEETING
Monday and Tuesday, 14th and 15th November
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
9 September 2011