MAY BE REPOSTED
This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees. They took place at the home of Neil Riley, MEA Chairman, in Dorking, Surrey on Monday 30 January and Tuesday 31 January 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) – Tuesday morning
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman
Nicki Strong – Observer
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Maya Thomas (MT) – Fundraising
Martine Ainsworth-Wells (Associate Trustee)
A considerable part of the Tuesday morning meeting was devoted to a general discussion on various aspects of forward planning for both the year ahead and the longer term future of the MEA.
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 November 2011.
Despite considerable on-going difficulties faced by charities in the current economic climate, it is encouraging to note that our general income remained slightly ahead of expenditure during the period up to November 2011. 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 improving the interest received on deposit accounts. Some further changes were agreed.
The MEA has received a very generous donation from one of our members, who wishes to remain anonymous, to cover the cost of running the ME Connect telephone and email information and support service this year.
GB reported that Lucy Hawker has started her maternity leave. Sue Leyland, her temporary replacement has been appointed and is settling in well.
Trustees discussed a new system for staff appraisals that will be introduced in 2012.
AGM and TRUSTEE ELECTIONS
As part of forward planning, the date of the 2012 AGM was provisionally fixed for November.
Trustees standing for re-election in 2012 will be Ewan Dale and Charles Shepherd.
Following the death of two of our Patrons in 2011 – Louie Ramsay, daughter of Dr Melvin Ramsay, and her husband George Baker – trustees held a further discussion on who might be willing to take on a role of Patron. Trustees would still 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 many people are 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 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 a report from Maya Thomas, fundraising assistant, which covered current and future fundraising initiatives.
The 2011 Big Give ‘Christmas Challenge’:
The MEA took part of this event in December – which involved matched fundraising activities – for the first time in 2011. Just over £5,500 was raised. The money will help to support a 2012 training programme for our ME Connect volunteers.
Running events and the 2012 BUPA London 10k race
We now have people taking part in a number of marathons and other running events, including three people in the London Marathon, along with eight confirmed places for our team in the 2012 BUPA London 10k race on 27th May.If you would like to go on the reserve list for the MEA team, please email firstname.lastname@example.org.
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 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 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 on each sale at no charge whatsoever to the purchaser. Please give it a try! Registering only takes a few seconds on the Easyfundraising.com website. We suggest you stick a reminder note on 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. Recycling envelopes and trolley coins can be ordered using the pdf ORDER FORM immediately to the right of this item, the order form ME Essential or by phoning 01280 818964.
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.
Great Weather Lottery: We have been informed that there have been some changes to the rules of this competition. More details can be found on the GWL website.
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: email@example.com or by phoning 01908 310052 between 9.30 and 17.00 Monday to Friday. Please be sure to leave a message if Maya is not immediately available.
Email database: We are keen to build up an email database of people who would like to receive email alerts from the MEA, 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 us occasionally or regularly (eg through standing orders).
PARLIAMENTARY MATTERS: APPG on ME
CS reported on the January 24th meeting of the All Party Parliamentary Group (APPG) on ME.
The speaker at this meeting was Sir John Savill, Chief Executive of the Medical Research Council. Sir John gave a presentation on the recent MRC funding announcement and then answered questions. A summary of the question and answer session is being prepared for the MEA website.
Representatives from the following charities and groups attended this meeting: Action for ME, Blue Ribbon for ME, ME Research UK, the MEA and the 25% Group.
As soon as we have the minutes for this meeting, 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 (Charles Shepherd from the MEA plus Sir Peter Spencer and Tristana Rodriguez from Action for ME) 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 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 2 November 2011 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 the MEA website:
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
CS reported that the next meeting of the Forward ME Group will take place on Wednesday 1 February 2012 at the House of Lords. The invited speaker is Professor Malcolm Harrington, who will be discussing his review of the Working Capability Assessment component of ESA and the report prepared by the Fluctuating Conditions Group – where Dr Charles Shepherd represents the ME/CFS charities.
NB: This meeting had to be cancelled at very short notice because Professor Harrington was unwell. A new date is being arranged.
The last meeting of the Forward ME Group of charities was held on Wednesday 26 October 2011. The first part of the meeting was taken up with a presentation by Lord 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. 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, including the question and answer session with Lord Freud, 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 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 continuing to cause great difficulty for many 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 at: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: https://meassociation.org.uk/?p=6632 Updated information on the proposed change to PIP, including further consultation, 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 in the November 2010 ME Essential and at: 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, can also be downloaded by using 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 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 that will go to Professor Harrington. 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.
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 to The MEA:
All the indications are that people are still finding it very difficult to obtain ESA. However, 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 guide 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’s also worth obtaining the fluctuating conditions report – this be downloaded free from the MEA website.
The decision to bring in changes to the WCA descriptors as from 28 March 2011:
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 16 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 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 London on to see how the much criticised LiMA computerised medical assessment process works. A summary of his visit was sent to the DWP and Professor Harrington.
Following Scottish elections, previous committee members met Alex Fergusson MSP on 15 June 2011 in order to liaise with MSPs with the aim of re-establishing the group in the new parliament. A report on this meeting is on the MEA website: www.meassociation.org.uk/?p=6630
ED attended a committee meeting of the Cross Party Group (CPG) and reported on the decision to form a number of patient membership sub-groups that would produce information on issues that could then be taken forward by the CPG. These ub-groups will cover:
Education of GPs and the Scottish Good Practice Statement
Scottish Needs Assessment
Scottish Centre of Excellence
Children and young people
The next CPG meeting will take place on 21 March 2012.
ED also gave details of a Brain Awareness Week at the Scottish Parliament. Trustees agreed to provide any necessary financial assistance for an MEA stand at this meeting, which Ewan will be attending.
MEA ANNUAL MEDICAL MEETING
This year’s MEA Question Time meeting will be held in Shrewsbury on Saturday 6th October – starting at 2pm. Further details can be found in the January issue of ME Essential.
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 (Dietitian), Dr Charles Shepherd (Hon Medical Adviser) and Dr Nigel Speight (our Hon Paediatric Adviser). Dr Sarah Myhill, who lives nearby, has also accepted an invitation to join the Panel this year.
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.
We want to hold the 2013 meeting somewhere in the South of England. If you are interested in co-hosting the 2013 event, please get in touch.
Invest in ME conference Trustees agreed to once again to have MEA representation at this meeting on 1st June.
BACME conference Trustees agreed to approach the organisers to see if they would be willing to allow the MEA to have a stall at this meeting.
NICE Conference: Trustees discussed the possibility of attending the 2012 NICE conference and whether we should have an information stand at this event.
Expert Patients Conference: CS attended this event in London on 23 November 2011.
A new Management File on the subject of 10 Key Aspects of Management appears in the current issue of ME Essential.
We are currently updating our leaflet on Alternative and Complementary Therapies. A revised version will be available in the Spring 2012 issue of the magazine.
The leaflet on Social Care is also being updated.
We are currently collecting information on life insurance providers – please let us know if you have 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 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 includes a full page on XMRV research.
MEA literature can be obtained using the website pdf ORDER FORM which appears immediately to the right of this item.
or the eight-page order form inside ME Essential magazine, or by phoning Head Office on 01280 818064.
Dr Melvin Ramsay’s book on the history of ME: We are currently in the process of preparing 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, which also covers some of the other famous outbreaks around the world, is temporarily out of stock but will be reinstated on the Order Form soon.
Kay Gilderdale book: Copies are available on our literature order form. A review of the book appears in the June 2011 ME Essential.
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 on the new on-line shopping and membership opening/renewal facility – which will include merchandise, literature, books and membership subscriptions. We hope to be able to launch this new website facility 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 January question asked about alcohol intolerance. The February question is looking at whether people would be willing to volunteer to take part in a UK trial on Rituximab.
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 previously appeared on our website.
ME CONNECT STATISTICS FOR 2011
Total telephone calls for 2011: 3106 (2932 in 2010). Email total 1666 (1926 in 2010). The overall total for ME Connect in 2011 is: 4772 (4858 in 2010). The drop in emails, and consequently the overall total, is mainly due to website changes introduced during the year.
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 very keen to hear from anyone who would like to join ME Connect as a volunteer. If interested, please email us at firstname.lastname@example.org
ME ESSENTIAL MAGAZINE
TB reported on plans for the next issue, which will appear in mid-April. The last date for copy for this issue is mid-March.
Among the contents for current issue are:
TWO NEW MEA MANAGEMENT FILES 10 Key Aspects of Management and Rituximab
OTHER MEDICAL ITEMS
Blue Badge refusals
Burrswood Hospital ME/CFS service
Cavity wall insulation – is it safe?
DoH classification of ME and CFS
Epidemiology – How many people have ME/CFS?
Low dose Naltrexone
MRC research funding awards
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine as well as contributions.
BBC Alba in Scotland transmitted two well received documentary programmes covering various aspects of ME/CFS on 24 January and 31 January 2012. The MEA was heavily involved in the preparation of these programmes and CS went up to Glasgow to record his input. The programmes can now be viewed on YouTube. More information can be found in the January news archive on the MEA website.
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.
Our complaint to the Press Complaints Council relating to the Daily Telegraph was rejected. More information at: www.meassociation.org.uk/?p=9393.
Trustees discussed the inflammatory item by Rod Liddle about benefit reform and the illness ME in his weekly column for The Sun and what action should be taken if the paper declined to publish our letter pointing out factual inaccuracies.
NB: The Sun published the letter from The MEA on Wednesday 1 February. A copy of this, plus two other letters, can be found in the February news item section at this website. The MEA has now submitted a formal complaint relating to both accuracy and discrimination to the PCC.
NICE GUIDELINE REVIEW IN 2013
Trustees gave some further consideration to the preparation of evidence, especially relating to CBT and GET, that will need to be submitted to the NICE guideline review, when this takes place in 2013.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
CS updated trustees on various MEA initiatives that have been taking place since publication of results from this clinical trial that took place in Norway.
The MEA has been 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: http://www.bbc.co.uk/news/health-15401746
CS has 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 has written to the Medical Research Council to add their encouragement to the need to set up a UK trial and this was discussed with Sir John Savill when he attended the last APPG meeting.
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 and preliminary discussion has taken place with one interested research group
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 involving the WPI. With a considerable number of 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 from this study are now expected to appear sometime before the middle of 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 and Medical Research Council – Professor Anne McArdle, University of Liverpool – Assessment of mitochondrial dysfunction in ME/CFS:
University of Liverpool press release:
Scientists at the University of Liverpool are the first to use a new laboratory technique that could reveal the causes of Chronic Fatigue Syndrome (CFS).
CFS is a severely debilitating illness, characterised by prolonged fatigue that can be triggered by minimal activity. Fatigue is accompanied by symptoms that may include painful muscles and joints, disordered sleep patterns, gastric problems and cognitive impairment.
The causes of the condition are unknown, but some studies have suggested that a defect in the energy producing components of muscle cells, called mitochondria, could be responsible. Other studies, however, have not been able to demonstrate this defect. It is thought that limitations in the methods used to determine mitochondrial function in human muscle fibres could be the reason why the causes of CFS have been difficult to explore.
Scientists at Liverpool are the first to implement a newly developed technique that is more sensitive to identifying mitochondrial function within the muscle’s fibres. Researchers anticipate that these new methods will demonstrate whether skeletal muscle mitochondria in patients with CFS are dysfunctional, which would result in muscle fatigue and further complications leading to chronic inflammation and pain.
Professor Anne McArdle, from the University’s Institute of Ageing and Chronic Disease, said: “The mechanisms that lead to debilitating muscle fatigue and pain in CFS patients are unknown. The time required for diagnosis further complicates the identification of the factors responsible for triggering the illness. Reversal of the severe fatigue that follows remains the most promising form of treatment.
“Scientists have hypothesised that mitochondria malfunction, significantly reducing the energy supply to the muscle cells that allow the body to carry out its daily activities. The pain and inflammation that follows can cause further mitochondrial abnormalities and so the vicious cycle of events continue.
“At Liverpool we have established newly developed techniques in the laboratory that can identify dysfunction as it occurs in the muscle cells. It is at this point we can look at interventions to reverse or halt further damage.
RRF funding = £30,000
RRF – Professor Julia Newton et al, University of Newcastle:
This RRF-funded research involves muscle function in ME/CFS. 25 subjects 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 study were published in the European Journal of Clinical Investigation in January 2012 (42(2):186-94).
Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study.
Jones DE, Hollingsworth KG, Jakovljevic DG, Fattakhova G, Pairman J, Blamire AM, Trenell MI, Newton JL.
Institute of Cellular Medicine Newcastle Magnetic Resonance Centre Institute for Ageing and Health The UK NIHR Biomedical Research Centre in Ageing and Age Related Diseases Newcastle Centre for Brain Ageing and Vitality, Newcastle University, Newcastle, UK.
BACKGROUND Chronic fatigue syndrome (CFS) patients frequently describe difficulties with repeat exercise. Here, we explore muscle bioenergetic function in response to three bouts of exercise.
METHODS A total of 18 CFS (CDC 1994) patients and 12 sedentary controls underwent assessment of maximal voluntary contraction (MVC), repeat exercise with magnetic resonance spectroscopy and cardio-respiratory fitness test to determine anaerobic threshold.
RESULTS Chronic fatigue syndrome patients undertaking MVC fell into two distinct groups: 8 (45%) showed normal PCr depletion in response to exercise at 35% of MVC (PCr depletion >33%; lower 95% CI for controls); 10 CFS patients had low PCr depletion (generating abnormally low MVC values). The CFS whole group exhibited significantly reduced anaerobic threshold, heart rate, VO(2), VO(2) peak and peak work compared to controls. Resting muscle pH was similar in controls and both CFS patient groups. However, the CFS group achieving normal PCr depletion values showed increased intramuscular acidosis compared to controls after similar work after each of the three exercise periods with no apparent reduction in acidosis with repeat exercise of the type reported in normal subjects. This CFS group also exhibited significant prolongation (almost 4-fold) of the time taken for pH to recover to baseline.
CONCLUSION When exercising to comparable levels to normal controls, CFS patients exhibit profound abnormality in bioenergetic function and response to it. Although exercise intervention is the logical treatment for patients showing acidosis, any trial must exclude subjects who do not initiate exercise as they will not benefit. This potentially explains previous mixed results in CFS exercise trials.
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 focused 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 a retrovital infection 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 involving people with severe ME, 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: 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 – Action for ME, the MEA and ME Research UK – along with a very generous private donor – have raised over £150,000 in funding in order to set up the first biobank for research into this illness. Work commenced in August 2011. 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 November 2011 issue of ME Essential. The next progress report and Steering Group meeting will be taking place on 1 March 2012.
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 at: 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.
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.
RRF – Grant Application Form: A new electronic application form has been completed.
Abstracts from two of the most recent MEO research papers to be published can be found here:
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
In December, the MRC announced details of five awards they are making in relation to the £1.6 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 news archive on the MEA website and in the current issue of ME Essential magazine.
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: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
DATE OF NEXT BOARD MEETING
Monday and Tuesday, 16 and 17 April, 2012.
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser | 7 February 2012.