MAY BE REPOSTED
This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees – on Monday 14 November and Tuesday 15 November, 2011. The meetings took place at our office in Buckingham.
A brief summary of the AGM (which took place on Tuesday) and the results of the trustee elections are also included.
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.
PRESENT
Trustees:
Ewan Dale (ED) – Honorary Treasurer
Rick Osman (RO) – Tuesday only
Neil Riley (NR) – Chairman – by telephone link
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman – Monday only
MEA Officials:
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Maya Thomas (MT) – Fundraising on Monday
Apologies:
Martine Ainsworth-Wells (Associate Trustee)
In the absence of Neil Riley in Buckingham, the meeting was chaired by Ba Stafford on Monday and Rick Osman on Tuesday.
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 September 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 considered further 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.
Trustees reviewed the on-going changes to banking arrangements which are aimed at improving the interest received on deposit accounts. Some further changes were agreed.
ED reported that the 2010 Annual Reports had been sent to Companies House and the Charity Commission.
Staff salaries for 2012 were agreed.
Christmas and New Year arrangements:
MEA Head Office will be closed from Friday noon, 23rd December till 9am on Tuesday 3rd January.
ME Connect will remain open for the whole holiday period, including Christmas Day, although they may have to be some adjustment to hours on certain days.
AGM and TRUSTEE ELECTIONS
The AGM was held on Tuesday afternoon after completion of the Board meeting. A copy of the Chairman's report will appear in the January 2012 issue of ME Essential. A summary of the financial return for years ending December 2009 and 2010 can be found in the current issue of ME Essential magazine.
Votes cast in trustee election:
Rick Osman: 239 in favour; 9 against; one abstention
Neil Riley: 248 in favour; 1 against
2 postal votes were disallowed as they arrived too late.
Following the AGM, NR was re-elected as Chairman; BS as Vice Chairman, ED as Honorary Treasurer and GB as Company Secretary.
MEA PATRONS
Following the death this year of two of our Patrons – Louie Ramsay, daughter of Dr Melvin Ramsay and George Baker – trustees discussed who might be willing to take on a role of Patron. Before any firm conclusions are made, trustees would welcome feedback from MEA members on this subject.
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. This includes the administration of the MEA Ramsay Research Fund. We are also seeing a situation where many people are faced with having to consider reducing donations to charities in general. 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 are taking place.
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 and went through her report.
The Big Give ‘Christmas Challenge'
The MEA is taking part of this event which involves matched fundraising activities. A total of £2,100 has already been pledged. Funds raised will help to support training for our ME Connect volunteers.
Online donations start on 5th December and continue for a week until 9th December, when the appeal will close. More information is on our website and in the current issue of ME Essential.
Running events and the 2012 BUPA London 10k race
The number of sponsored events continues to increase. Several people have already taken part in races and fun runs for the MEA in 2011.
We now have seven confirmed places to join our team in the 2012 BUPA London 10k race on 27th May and expect to announce a full complement of eight team members very shortly. In addition, two others will be paying their own way in the race. If you would like to go on the reserve list for the MEA team, please email maya_mea@talktalk.net as a matter of urgency.
Other fundraising events – ideas always welcome! While runs, bike rides, skydives 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 continue to welcome the views of the membership on how people with ME/CFS might play a more active role in fundraising.
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
Collection boxes Flatpack collection boxes for loose change have now arrived. These are being advertised in the magazine and on the website and can 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. Please give it a try now that Christmas is coming! Registering only takes a few seconds on the Easyfundraising.com website. We suggest you make a reminder note on or near your computer.
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 ME Essential magazine, or by phoning MEA Head Office on 01280 818968 or 818964. Envelopes for the return of ink cartridges and mobile phones can be ordered using the literature order form or by 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.
Christmas cards This year's cards are now available. Please download the leaflet by clicking on the following link www.meassociation.org.uk/wp-content/uploads/2011/08/Christmas-Cards-2011-use-this-copy.pdf.
Summer Prize Draw Prizewinners appear in the current ME Essential.
Fundraising information Maya Thomas deals with our 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 phoning her on 01908 310052 between 9.30 and 17.00 Monday to Friday. Leave a message if Maya is not immediately available.
As ever, our deep gratitude to all those who undertake fundraising events on our behalf and who donate to us occasionally or regularly (eg through standing orders).
PARLIAMENTARY MATTERS: APPG on ME
CS reported on the first meeting of the All Party Parliamentary Group (APPG) on ME for this session of parliament – this was held on Tuesday 25 October. There was no speaker this time and the main topics for discussion were issues relating to welfare and benefit reform (Employment and Support Allowance/ESA and Disability Living Allowance/DLA in particular), NHS services and Research – including the clinical trial of Rituximab.
Representatives from the following charities attended this meeting: AfME, BRAME, MERUK, MEA, 25% Group.
The agenda for this meeting, along with briefing papers prepared by the Secretariat (AfME and MEA) on Welfare Reform, NHS Services and Research, can be found 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 plus Sir Peter Spencer and Tristana Rodriguez from AfME) and representatives from some national ME/CFS charities 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 gradually enlarge the public presence at APPG meetings.
A delegation from the APPG on ME met with Tim Loughton, Children's Minister, on Wednesday 2nd November to discuss issues relating to education, child protection and NHS services that were raised at a previous APPG meeting. A summary of the meeting with Tim Loughton is on on the MEA website: www.meassociation.org.uk/?p=8729
APPGs representing the five charities (listed below in Welfare Reform section) working with Professor Malcolm Harrington on Working Capability Assessment and ESA reform will be holding a joint meeting at Westminster to discuss the current situation regarding benefit assessments, Atos etc.
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 is included in 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 last meeting of the Forward ME Group of charities – which was held on Wednesday 26th October. The first part of the meeting was taken up with a presentation by Lord David Freud on Welfare Reform. Each charity representative was then given the opportunity to question Lord Freud. Dr James Bolton (DWP medical adviser) attended this meeting with Lord Freud. Other topics discussed included progress of the Health and Social Care Bill, the Innovait article on GP training, the National Outcomes Database and Research.
The Minutes for this meeting will appear 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 is taking a very active part in the Welfare Reform Bill as it passes through the House of Lords.
The Forward ME Group website has information about the group and archives of minutes from past meetings.
WELFARE REFORM: ESA, WCA, DLA and Incapacity Benefit/ICB
Trustees reviewed the current MEA strategy regarding 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. This is 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 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 – this was referred to during the meeting with Lord Freud. 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 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 reviewing 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 by clicking on this link:
www.meassociation.org.uk/wp-content/uploads/2011/05/Fluctuating_conditions_report_FINAL-1.pdf
Fluctuating conditions report and ESA As noted above,. 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 have been meeting with a Scrutiny Group appointed by the DWP in order to reach agreement on a final set of conclusions and recommendations that will go to Professor Harrington. This work is now almost complete and will be forwarded to Professor Harrington and the DWP very shortly. Professor Harrington's second year review is due to be published towards the end of the year.
Benefit review seminar CS attended a DWP seminar 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 has visited an Atos assessment centre in Marylebone, London on 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
SCOTTISH MATTERS
Following Scottish elections, previous committee members met Alex Fergusson MSP on 15 June in order to liaise with MSPs with the aim of re-establishing the Cross Party Group on ME in the new parliament. A report on this meeting is on the MEA website: www.meassociation.org.uk/?p=6630
ED reported on the committee meeting on 7 September with MSPs – Mary Fee (Lab, West Scotland) had agreed to be convenor for the new parliament with Jim Eadie (SNP, Edinburgh South) and Siobhan McMahon (Lab, Central Scotland) as vice-convenors – and the first full meeting of the CPG on 21 September. It was agreed that the group had to develop a new strategy for better progressing its aims in this parliament, and that should be agreed at the next full meeting, which should also be an AGM, with a vote for a new committee.
ED will be attending the next committee meeting of the CPG on Wednesday 16 November where plans for work during this session of parliament will be developed, and the subsequent full CPG meeting 2 weeks later.”
MEA ANNUAL MEDICAL MEETING
CS reported on this year's ‘ME Question Time' meeting that was held in conjunction with Kirklees Independent ME Support Group in Huddersfield, West Yorkshire on Saturday 8 October. Trustees then discussed possible options for the 2012 meeting.
The MEA annual medical meeting is an open and free meeting in a ‘ME Question Time' format that we rotate around the country each year. Panel members this year included Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Dr Charles Shepherd (Hon Medical Adviser, MEA). Dr Nigel Speight (Hon Paediatric Adviser, MEA). was unable to attend as he was doing a locum appointment in Scotland. His place was taken by Elizabeth Turk.
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.
OTHER MEETINGS
NICE Conference: Trustees discussed an invitation to attend the 2012 NICE conference and whether we should have an information stand at this event.
Expert Patients Conference: CS will be attending this event in London on Wednesday 23 November.
MEA LITERATURE
A new Management File on the subject of Relapses, Exacerbations and Flare Ups appears in the current ME Essential.
We are currently updating our leaflet on Ten Key Aspects of Management. A revised version will be available in January.
We are currently collecting information on life insurance providers – please let us know if you information about insurance companies that are willing to provide life cover and those that are reluctant to do so, or want to include a significant excess,.
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 by clicking on this link www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res4.pdf 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.
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/2011/10/MEA-Order-Form-October-2011.pdf
or the 8-page order form insert in ME Essential, or by phoning Head Office on 01280 818064 / 818968.
Dr Melvin Ramsay's book on the history of ME We are ordering a reprint of our 2005 re-publication of Dr Melvin Ramsay's ground-breaking book on the ME epidemic at the Royal Free Hospital 50 years earlier. This book is temporarily out of stock but will be reinstated on our Order Form as soon as it becomes available again.
Kay Gilderdale book Copies are available on our literature order form. A review of the book appears in the June ME Essential.
MEA WEBSITE
Trustees discussed on-going alterations and additions to the MEA website. If anyone has any comments or problems with either content or layout of our website, please let us know.
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 June question assessed public opinion on the latest developments relating to XMRV research. The current November question is asking about the level of care that people require. 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.
The website now has a regular Friday feature on research. This contains abstracts from research papers that have not yet been published at the website.
ME CONNECT
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: 10am-12 noon; 2pm-4pm, 7pm-9pm. Tel: 0844 576 5326.
We are very keen to hear from anyone who would like to join ME Connect as a volunteer. If interested, please contact us via administration@meassociation.org.uk
ME ESSENTIAL MAGAZINE
TB reported on plans for the next issue, which will appear in early January. The last date for copy for this issue is the first week of December.
Among the contents for current issue 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.
MEDIA
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 to help with this programme.
We have been working with UK representatives of the Norwegian researchers in order to obtain some publicity for the results of the Rituximab clinical trial. As a result this has been covered by the BBC, New Scientist and Daily Mail.
CS updated trustees on the current situation regarding our complaint to the Press Complaints Council and the Daily Telegraph.
NICE GUIDELINE REVIEW IN 2013
Trustees gave some preliminary consideration to the preparation of evidence during 2012 that will need to be submitted to the NICE guideline review, when this takes place in 2013.
NMS FORCE ANALYSER
CS attended a demonstration of a new technique for assessing muscle function, strength and fatigue at The Royal Buckinghamshire Hospital. This device 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 a previous 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)
RITUXIMAB
CS updated trustees on various MEA initiatives that have taken place since the publication of results from this clinical trial that took place in Norway.
The MEA is working very closely with the UK representatives of the Norwegian research group in order to obtain media publicity for the trial results. Examples so far include coverage via the BBC, New Scientist and Daily Mail.
BBC coverage: www.meassociation.org.uk/?p=8459
CS briefed the All Party Parliamentary Group on ME at Westminster, and the Forward ME Group at the House of Lords, on the results. The Chair of the APPG is writing to the Medical Research Council to add their encouragement to the need to set up a UK trial.
CS has discussed the results, and a possible preliminary protocol for a UK clinical trial, with leading experts at University College London in the use of this drug and with the chair of the MRC Expert Group on ME/CFS research.
The MEA has made it clear that the Ramsay Research Fund would be very happy to look at funding proposals for a UK clinical trial.
A note of caution: This is one small clinical trial. We need to see the results from further clinical trials before coming to any conclusions about the way in which this drug might work in ME/CFS and whether or not it is an effective form of treatment for what may be a sub-group of people with ME/CFS who have an autoimmune component. We do not want to see a repeat of the false hopes created by the XMRV research.
The second version of a Question and Answer item on the trial can be found on the MEA website: www.meassociation.org.uk/?p=8459 We will continue to update this information as further developments occur.
XMRV and MLV: Trustees discussed the latest XMRV research and the legal dispute that is now taking place. 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. We are now awaiting 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 in 2012.
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!
Summary of research that has recently been funded, or is being funded by the RRF
RRF: Professor Julia Newton et al, University of Newcastle This RRF-funded research involves muscle function in ME/CFS. 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.
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, 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, can be found in the open access scientific journal, BMC Medical Genomics: https://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: A group of three charities – Action for ME, The ME Association and ME Research UK – 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. Work commenced in August. 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, appears in the current issue of ME Essential. The first progress report and Steering Group meeting will be taking place on 24th November in London.
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. 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.
RRF: RESEARCH PROPOSALS
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.
RRF: 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. Discussions have been continuing with some of the researchers involved to see if this study can still proceed but in a different format.
Ramsay Research Fund Grant Application Form A new electronic application form has been completed.
OTHER RESEARCH
ME Observatory
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.
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:https://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 had 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
DATE OF NEXT BOARD MEETING
Monday and Tuesday, 30th and 31st January 2012
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
21 November 2011