MEA Board of Trustees: summary of our October 2012 meetings

MAY BE REPOSTED
 
This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees. The meetings took place in Buckingham on Monday 1st and Tuesday 2nd October 2012.
 
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 
Neil Riley (NR) – Chairman (by telephone link on Monday)
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman

MEA Officials:
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Maya Thomas (MT) – Fundraising Assistant (Monday afternoon)
 
Others
David Allen – Associate trustee

Apologies
Rick Osman (RO) – Trustee
Nicki Strong (NS) – Associate trustee
Martine Ainsworth-Wells – Associate trustee 
 
FINANCES, ADMINISTRATION, PREMISES AND STAFF
 
ED updated trustees on the current financial position.  This was followed by a discussion on arrangements for the annual audit and the monthly management accounts for the period up to the end of August 2012.  

ED reported that the annual returns for both companies (MEA and ME and You – our trading company) have been filed with Companies House and that annual accounts for both companies have been sent to Companies House.   
 
Despite considerable on-going difficulties faced by charities in the current economic climate it is very encouraging to note that our general income from all sources remains ahead of expenditure for the first eight months of 2012.

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 on-going changes to banking arrangements which are aimed at maximising the interest received on deposit accounts.  Some further changes were agreed.
 
The MEA received a very generous donation at the start of the year from one of our members, who wishes to remain anonymous. This is covering the entire cost of running the ME Connect telephone and email information and support service during 2012.

We received over 70 applications to fill the vacancy for the post of our part time administrative assistant following the departure of Lucy Hawker. Interviews took place in September and trustees agreed to appoint Helen Darling to the post. Helen will be starting work on Monday October 22nd. Trustees expressed their thanks to Elaine, who has been doing this work on a temporary basis.

We will shortly be saying goodbye to Peter Crisp who has been dealing with the smooth management of our accounts for several years. We will be presenting Peter with a gift to express our appreciation. Trustees met with Vicky Smith, who has been appointed to take over from Peter.

Trustees discussed the new system for staff appraisals that is being introduced.
 
AGM and TRUSTEE ELECTIONS
 
The 2012 AGM will take place on Tuesday 4th December at the Apollo Business Centre in Buckingham. Forward planning arrangements for the meeting were completed.
 
Trustees standing for re-election this year are Ewan Dale and Charles Shepherd. Voting papers will appear in the November issue of ME Essential.

More details on the AGM and trustee elections appear in the August issue of ME Essential.

Trustees welcomed David Allen to his first full Board meeting. David has joined The MEA as an associate trustee.
 
MEA PATRONS
 
Following the death of two of our well known Patrons in 2011 – Louie Ramsay, daughter of Dr Melvin Ramsay, and her partner the actor George Baker – trustees held a detailed discussion on who might be willing to take on a role of Patron at their meeting in February. As a result we approached consultant neurologist Professor Peter Behan, who has noew taken up the role of Patron. More information on this appointment can be found in the MEA website news archive. Trustees continue to discuss other possible candidates for this role and would welcome feedback from MEA members on this subject.
 
FUNDRAISING INITIATIVES and DONATIONS
 
As the charity receives no government funding we have to raise a substantial amount of funds on top of membership subscriptions – which currently only provide around half of the general income that is required to cover the basic running costs of the charity and Head Office administration.  This includes all of the administration costs of the MEA Ramsay Research Fund. 
 
We are also facing a situation whereby people are reducing donations to charities in general.  At the same time, demand on our support and information services is steadily increasing, especially in relation to benefit and employment information now that major changes to the welfare/benefit system 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.
 
Trustees reviewed the regular report from fundraising assistant Maya Thomas which covers current and future fundraising initiatives.
 
The 2011 Big Give ‘Christmas Challenge’
 
The MEA took part of this event – which involved matched fundraising activities – for the first time in December 2011.  Just over £5,500 was raised.  This money is being used to fund the 2012 training programme for our ME Connect volunteers – which commenced in March.

Following the success of this event in 2011 Tony Britton submitted an application to do so again in 2012 and this has been successful. This time we will be using the money to educate GPs on ME/CFS through distribution of a fully updated 2012/2013 version of the MEA ‘purple booklet’ – ME/CFS/PVFS – An Exploration of the Key Clinical Issues – and asking members and other PWME to tell us which doctors’ surgeries they think would most benefit from receiving the booklet. CS will be preparing this later in the year.

Information on how to pledge donations appeared in the August ME Essential. There will also be regular updates on The MEA website, MEA Facebook, MEA email feed and our Twitter feed.

We have over raised £1,900 in confirmed pledges which will go into the matched funding pot. This exceeds our target of £1,850 and the pledging part of the appeal has now closed.
 
Cycling, running, swimming and walking events and the 2012 BUPA London 10k race

We have a steadily growing number of supporters who are taking part in activity events all around the UK. Past and future events include the Bristol half marathon, Brighton marathon, Edinburgh marathon, Festival Hall Marathon 2013, Fred Whitton 112 mile cycle challenge round the Lake District, Great North Run, Great Scottish Run 2012, Greater Manchester 10K, Jane Tomlinson’s Run for All Leeds 10K, Leeds half marathon, New Forrest half marathon, London to Paris cycle ride, Reading half marathon, Robin Hood half marathon, Roseland August Trail, Sheffield half marathon, Stafford half marathon, Swindon half marathon, Yorkshire Dales sponsored walk – a well as Pampered Chef nights, Parachute jumping, Zumba dancing, and the 5 Peaks Challenge.

We have 22 places (with 5 expressions of interest) for the BUPA 2013 and 2 places in the 2013 Dublin marathon.

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 members on how people with ME/CFS might play a more effective 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 are now available from Head Office. 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!  Registering only takes a few seconds at www.easyfundraising.org.uk/causes/mea/?u=6XOGCS  We suggest you make a reminder note on or near your computer and spread the word to friends.
 
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 downloadable ORDER FORM on the right hand side of this page. 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. 

2012 Christmas Cards

These have been printed and available from The MEA. The designs can be viewed by clicking on ‘MEA 2012 Christmas cards’ in the Quick Links box on the right hand side of this page.
 
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. Do leave a message if Maya is not immediately available.
 
Email database 

We are continuing to build up an email database of people who would like to receive email alerts from the MEA. We have over 1500 people on the list so far. If you would like to be added to this list, please contact Maya on the email address above.
 
As ever, our deep gratitude to all those who undertake fundraising events on our behalf and who donate to The MEA occasionally or regularly through Standing Orders.
 
PARLIAMENTARY MATTERS: APPG on ME
 
The first meeting of 2012 for the APPG on ME took place on January 24th.
 
As reported previously, the speaker at this meeting was Sir John Savill, Chief Executive of the Medical Research Council.  Sir John gave a presentation on the MRC funding announcement and then answered questions.  The minutes for this meeting can be found in the news archive on the MEA website.

The main part of the meeting planned for Wednesday 4 July – which was due to discuss severe ME/CFS and hear presentations from Professor Derek Pheby and Dr Claire McDermott – had to be postponed because it became apparent that very few MPs would be able to attend due to other important business taking place in the House that day. The meeting was therefore restricted to a short AGM at which Annette Brooke was re-elected as Chair; Ian Swales and the Countess of Mar as Vice Chairs; Russell Brown as Secretary. Martin Vickers stood down as Treasurer due to pressure of other parliamentary work. Minutes of the AGM meeting can be found in the news section of the MEA website.

As soon as we have details of the date of the postponed meeting on severe ME/CFS these will appear on the MEA website. If people have any points on severe ME/CFS that they want to see raised these should be sent to Dr Shepherd via ME Connect.

CS reported that a business meeting involving parliamentary officials and the Secretariat is due to take place on Thursday October 18th.
 
Representatives from the following charities are invited to attend APPG meetings:  AfME, BRAME, Invest in ME, MERUK, MEA, 25% Group.
 
The APPG parliamentarians have decided that the 2012 meetings should again be closed meetings – so attendance is restricted to MPs, members of the House of Lords, the APPG Secretariat (Charles Shepherd from MEA plus Sonya Chowdhury and Tristana Rodriguez from AfME) and representatives from some national ME/CFS charities. The decision to continue to hold closed meetings is in the hands of the parliamentarians – not the Secretariat.  While we appreciate 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 APPG to gradually enlarge the public presence at their 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 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.
 
PARLIAMENTARY: Countess of Mar’s Forward ME Group
 
Two meetings of the Forward ME Group that took place during March at the House of Lords. 

The first invited speaker, on Tuesday 6th March, was Dr Derek Enlander from New York. Dr Enlander gave a presentation on the current situation regarding research and management of ME/CFS in America. Minutes of this meeting, along with Dr Enlander’s slides, are now published on the Forward ME Group website.

The second invited speaker, on Tuesday 13th March, was Professor Malcolm Harrington, who updated the group on his review of the Working Capability Assessment component of ESA and the report that was prepared by the Fluctuating Conditions Group – where Dr Charles Shepherd represents the ME/CFS charities.

A previous meeting of the Forward ME Group of charities was held on Wednesday 26th October 2011. 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) also attended this meeting. The Minutes for this meeting, including the interesting question and answer session with Lord Freud, can also be found on the Forward ME Group website: www.forward-me.org.uk
 
CS reported that the next meeting will take place on Tuesday 9th October when a representative from Atos will give a presentation and answer questions. If anyone has any specific points about benefit assessments that they want put to Atos please forward them to Dr Shepherd via ME Connect. Please note that questions should be short (one or two sentences) and of general interest because time is very limited – which means one or two questions per person.

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 has taken a very active part in the Welfare Reform Bill as it passed through the House of Lords. 
 
The Forward ME Group website has information about the group and archives of minutes from past meetings.

PARLIAMENTARY: Westminster Health Forum (WHF)

CS reported that he has been invited to attend meetings by the WHF – an organization that brings together policymakers in Parliament, Whitehall and government agencies to engage in discussion on public policy relating to health and healthcare with key stakeholders. These include health professionals in the NHS and the private sector, and representatives of the organisations they work in; businesses in the healthcare and pharmaceutical sectors and their advisors; patients’ and other interest groups, and the voluntary sector; and academics and commentators, along with members of the reporting press.

* Westminster Health Forum website: www.westminsterforumprojects.co.uk/forums/index.php?fid=westminster_health_forum

DWP BENEFITS AND WELFARE REFORM:

ESA, WCA, DLA changeover to PIP and Incapacity Benefit/ICB changeover to ESA 
 
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 continuing to cause great difficulty for many people with ME/CFS who are currently 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. In 2011 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 

CS reported to the Board on a previous occasion on a meeting in March that he had attended at DWP headquarters with Dr James Bolton, Deputy Chief Medical Adviser, to discuss the proposals for assessing PIP claims as they currently stand, and the likely timetable for implementing this changeover in 2013. Updated information on the DLA changeover to PIP can be found in the news archives on the MEA website.
 
Professor Malcolm Harrington’s Independent Review of the Work Capability Assessment.  

A copy of the MEA submission to this review can be found on the MEA website: www.meassociation.org.uk/?p=1639.  CS is a member of a group appointed by Professor Harrington that has reviewed 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 and appeals, can also be downloaded on the MEA website: http://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 was completed in April 2011 and was very well received by Professor Harrington.  As a result, the charities spent the rest of 2011 working  with a Scrutiny Group appointed by the DWP in order to reach agreement on a final set of conclusions and recommendations, This work was completed in November 2011 and was then forwarded to Professor Harrington and the DWP so that it could be included in Professor Harrington’s report on year two of his review.  A report on the meeting at the DWP to discuss the second year review recommendations can be found in the November 2011 news archive on the MEA website.

Testing the recommendations in the Fluctuating Conditions Report

Having received our recommendations the DWP have taken their time on deciding how our revised WCA descriptors – which are also intended to assess severity and fluctuation in relation to all the tasks that are included in the WCA – could be objectively tested against the current WCA descriptors. We have also proposed two new descriptors covering fatigue and pain.

At the end of June we were called to a meeting at the DWP where we were informed that an evidence based review (EBR) of our work will now take place. This involved an intense period of further work over a six week period in order reach agreement with the DWP on how our proposals should be objectively tested against the current descriptors.

This work is now complete and the testing phase is planned to commence in October. Analysis and reporting of the results will take place during early 2013. An independent scrutiny group, chaired by Professor Harrington, will oversee this work.
 
Benefit review seminar 

CS attended a meeting in September at the TUC where where Professor Harrington provided feedback to the charities on work related to his on-going review of the WCA – 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 and other previous joint discussions includes:
 

* 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 to The MEA 

All the indications are that people are still finding it very difficult to obtain ESA.  However, a significant proportion are successful if they go to appeal.  If anyone is applying for ESA, or is involved in the transfer from ICB to ESA,  please read our guidance leaflet on how to fill in the complex paperwork and the 10 ‘top tips’ on ESA that were in the June 2011 issue of the magazine.  It is also worth obtaining the fluctuating conditions report - this can 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 2011. Motions in the House of Lords to try to 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 2011.  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 a very important statement about ESA eligibility criteria in a response to an intervention from the Countess of Mar: “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 London on to see how the much criticised LiMA computerised medical assessment system works. A summary of his visit was sent to the DWP and Professor Harrington. As noted in the parliamentary report, a representative from Atos will be attending the Forward ME Group meeting in October.
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:

A group of three charities – AfME, MEA and MERUK – along with a very generous private donor raised over £150,000 in funding in order to set up the first ME Biobank for research into this illness.  Work commenced in August 2011 and the current funding covers the first phase of the project, which will end in November 2012.

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 ME Biobank, including a question and answer item, appears in the November 2011 issue of ME Essential . 

A Steering Group meeting that took place on 31 July. Key points to emerge from this meeting included:

* All targets are being met – the only exception being a minor weakness in the rate of recruiting participants and healthy controls

* Interest in the ME Biobank and co-operation with other research organisations is occurring

* Professor Derek Pheby reported on progress in setting up the Patient Database at the New University of Buckingham – where it is planned to set up a database of people with ME/CFS who want to donate blood samples

* A discussion took place on procedures for providing samples to research projects – it was agreed to continue this in more detail with half day meeting

* Plans, options and funding for the continuation of the Biobank once the current funding concludes in November were discussed. MEA trustees agreed to guarantee at last £40,000 in funding to continue this work for a further year

As a result of continuing discussion between the four current funders since July it has been agreed that around £160,000 of new funding will be made available in November. This will enable the ME Biobank to continue with existing work and to also expand the number of blood samples being collected and stored. We also intend to move forward with setting up a patient database of blood sample donors at the New University of Buckingham. This work is being co-ordinated by Professor Derek Pheby.

<em>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 ME Biobank facility is fully established.

However, we are intending to set up a database of contact details of people who would be willing to donate blood samples when this can be arranged.
 
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. 

A comprehensive update on the Biobank and Post-Mortem Tissue Bank, including a link to the statement of intent, can be found in the news section (September archive) of the MEA website: www.meassociation.org.uk/?p=12558
 
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: New research proposal involving exercise-induced fatigue and post-exertional malaise

At the April Board meeting trustees discussed a peer review report on a funding application for a biomedical research study that aims to increase our understanding of the pathological and physiological mechanisms that cause exercise induce fatigue and post-exertional malaise in ME/CFS. Following some changes to the application, as a result of the peer review process, trustees agreed to fund the study – which will be carried in two European centres – at their August meeting.

The study should help to demonstrate whether there are any pathophysiological abnormalities present, which may even be treatable, in people who meet the Fukuda research definition for CFS and the Canadian definition for ME/CFS (definitions or links to these definitions can be found in the MEA purple booklet). The study will also include a group of people with multiple sclerosis who experience significant fatigue (to see if there are any similarities) and a group of healthy controls with sedentary lifestyles. More details will be announced when contractual arrangements have been agreed.
 
Ramsay Research Fund Grant Application Form   A new electronic application form is now available.
 
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 

CS updated trustees on two further MRC initiatives relating to ME/CFS research.

Firstly, a new MRC highlight notice aimed at encouraging research applications, particularly involving neuropathology, has been made. More details can be found in the August issue of ME Essential magazine.

Secondly, a meeting took place on Thursday September 27th to take forward the idea of setting up an ME/CFS research collaborative that would bring together a wide range of people – including scientists, research funding charities, the pharmaceutical industry – who are interested in ME/CFS research.
 
Background information:

In December 2011, the MRC announced details of five awards they are making in relation to the £1.5 million of ring fenced money for biomedical research that was secured as a result of the work carried out by the MRC Expert Group on ME/CFS research. 

Details of the five awards can be found in the December 2011 news archive on the MEA website and in the January issue of ME Essential magazine.
 
The MRC have now updated the main MRC page on CFS/ME (www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm) to include greater detail of the projects funded under the ‘Understanding the Mechanisms of CFS/ME’ call (specifically the lay and technical summaries), along with Panel Membership details and the guidance documents that were produced for reviewers and Panel Members.   

The link to the project summaries document can be found under the section ‘MRC-funded research projects’. This information is also on the MEA website in the April news archive.

The study involving mitochondrial dysfunction is being co-funded by the MRC and the MEA Ramsay Research Fund.
 
Recommendations for research priorities that were agreed by the Prioritisation Group can be found here:

http://www.meassociation.org.uk/?p=4727

 
Minutes to the priority group meeting can be found here:  
www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174

York University

A meeting took place in April with researchers at York University with the aim of collaborating on a new research study that also involves researchers in Norway.

DATE OF NEXT BOARD MEETING

Monday and Tuesday, 3rd and 4th December.
 
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
8 October 2012