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 6th and Tuesday 7th August 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)
Charles Shepherd (CS) – Honorary Medical Adviser
Ba Stafford (BS) – Vice Chairman
MEA Officials:
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Others:
Nicki Strong – Associate trustee
Apologies:
Rick Osman (RO) – Trustee
Maya Thomas (MT) – Fundraising
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 June 2012.
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 six 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 will cover the entire cost of running the ME Connect telephone and email information and support service during 2012.
Trustees discussed the new system for staff appraisals that is being introduced this year.
AGM and TRUSTEE ELECTIONS
The date of the 2012 AGM was fixed for Tuesday 4 December at the Apollo Business Centre in Buckingham. Forward planning arrangements for the meeting were discussed.
Trustees standing for re-election in 2012 will be Ewan Dale and Charles Shepherd. The call for nominations will appear in the August issue of ME Essential.
More details on the AGM and trustee elections will also appear in the August issue.
Trustees interviewed a potential new 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 invited consultant neurologist Professor Peter Behan to become a 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 having to consider 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 (who was unable to attend on this occasion) which covered current and future fundraising initiatives.
The 2011 Big Give ‘Christmas Challenge'
The MEA took part if 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 people 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 for the ‘matched funding pot' will appear in the August ME Essential.
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 10K, 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 Forest Half Marathon, London to Paris cycle ride, Reading Half Marathon, Roseland August Trail in Cornwall, Sheffield Half Marathon, Stafford Half Marathon, Swindon Half Marathon, a family sponsored walk in the Lake District – a well as parachute jumping, Zumba dancing, and the 5 Peaks Challenge.
We also had eight confirmed places in our team in the 2012 BUPA London 10k race on 27th May. To date these runners have raised over £3,000 to date on JustGiving alone!
We now have 22 places for the BUPA 2013 and are already receiving inquiries about this event.
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 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 on the Easyfundraising.com website. 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 useful source of income – so please keep sending them in.Trolley coins can be ordered using the ORDER FORM on the MEA website, or the literature order form 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 also be ordered.
2012 Christmas Cards
These have now been printed and will be available shortly. The designs can be viewed in the August magazine.
- 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. 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 emailing Maya at maya_mea@talktalk.net or by phoning 01908 310052 between 9.30am and 5pm Monday to Friday. Please leave a message if Maya is not immediately available.
Email database
We are building up an email database of people who would like to receive email alerts from the MEA – with over 1700 people on it so far. If you would like to be added to this list, please contact Maya.
- 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
All Party Parliamentary Group 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 recent MRC funding announcement and then answered questions. The minutes for this meeting can be found in the news archive on the MEA website.
CS reported that the main part of the meeting planned for Wednesday 4 July – 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.
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 Sir Peter Spencer 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 The MEA understands 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.
Countess of Mar's Forward ME Group
CS reported at the last Board meeting on 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) attended this meeting with Lord Freud.
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
The next meeting will take place on Tuesday 9 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.
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 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 at www.meassociation.org.uk/?p=6632 CS has already reported 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 archive 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 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 and appeals, can also be downloaded from the MEA website: www.meassociation.org.uk/wp-content/uploads/2011/05/Fluctuating_conditions_report_FINAL-1.pdf
• Fluctuating conditions report and ESA As noted 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 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 been taking 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 of our work will now take place. This has involved an intense period of further work over six weeks in order reach agreement with the DWP on how our proposals should be objectively tested against the current descriptors.
This work is now almost complete and the testing phase is planned to commence in September. 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 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 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 are featured in rhe ‘Quick Links' section of our website. It is 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 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 Wednesday 16th March 2011. A television recording, and Hansard transcript of the debate, can be found at 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.
SCOTTISH MATTERS
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 at www.meassociation.org.uk/?p=6630
ED attended a committee meeting of the Cross Party Group (CPG) and at our Board meeting in February reported on the decision to form six patient membership sub-groups. These groups will be producing information on issues that could then be taken forward by the CPG. Sub-groups now cover:
• Education of GPs and the Scottish Good Practice Statement
• Scottish Needs Assessment
• Scottish Centre of Excellence
• Welfare reform
• Media awareness
• Children and young people
ED has been appointed to the first two sub-groups and updated trustees on progress.
ED reported an ME Awareness Week event at the Scottish Parliament on 8th May. Trustees had previously agreed to provide financial assistance for this meeting, which he attended.
MEA ANNUAL MEDICAL MEETING
Trustees finalized arrangements for this year's MEA Question Time meeting that will be held in Shrewsbury on Saturday 6th October starting at 2pm. Further details can be found in the August 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 (executive director,Tymes Trust), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA). Dr Sarah Myhill, who lives nearby, has also accepted an invitation to join the Panel this year. Sue Luscombe, a registered dietitian with close family experience of ME/CFS, has had to send in her apologies as she will not now be able to join the Panel in Shrewsbury.
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.
REPORTS ON OTHER MEETINGS
Invest in ME conference CS and NS attended this meeting on 1st June – Dr Shepherd's 4-page report will appear in the August ME Essential.
Open Medicine Institute meeting on ME/CFS
CS attended this closed collaborative meeting of clinicians and researchers held over three in New York in June.
The meeting was organized by Dr Andreas Kogelnik from the Open Medicine Institute in California. Among the well known names attending from both the USA and Europe were Dr Lucinda Bateman, Dr Oysten Fluge, Dr Nancy Klimas, Dr Charles Lapp, Dr Olaf Mella, Dr Dan Peterson, and Dr Ila Singh. A number of researchers who do not currently work in ME/CFS were also there.
From Tuesday evening till Friday morning, a group of about 15 met formally and informally over breakfast, lunch and dinner at the Harvard Club in New York. The presentations and discussions covered a wide range of clinical and research topics with an emphasis on the role of infection and immunology in the causation of ME/CFS and how this knowledge should be applied to treatment that addresses the underlying disease process in ME/CFS – rather than just providing symptomatic relief.
As this was a closed meeting covered by a strict confidentiality agreement – as unpublished data was being discussed – CS is not able to report on the content of these discussions. A group statement that summarises the group’s recommendations and actions is being prepared. This will appear on the MEA website as soon as it becomes available.
Pain conference in Edinburgh CS attended and spoke at the North British Pain Association conference for health professionals in Edinburgh on Friday 18 May. The title of his talk was ME/CFS: Fact, Fiction, Controversy and Uncertainty.
Dorset ME Group Annual Lecture
CS delivered the annual medical lecture on Saturday 5 May at Wimborne. Tribute have been paid to Dr William Tudor Thomas, who died unexpectedly at the beginning of August. Dr Tudor Thomas played a major role in developing services for people with ME/CFS in Dorset. More information can be found on the MEA website.
Rural Medical Practitioners Association CS has accepted an invitation to speak at their annual conference in September in Wales.
ED reported on two medical meetings he had recently attended in North East England
MEA SURVEY ON CBT, GET and PACING
As part of forward planning for our submission to the NICE guideline review, which is scheduled to take place in 2013, we have prepared a very comprehensive website questionnaire that will provide much needed patient evidence on all aspects of these treatments.
In addition, the results of the survey will:
1 be of value to medical researchers who wish to apply for funding to carry out further research into why CBT GET Pacing are found to be effective or ineffective, safe or harmful
2 indicate whether there is a need for better training of therapists.
3 highlight the lack of therapy facilities in some areas.
4 help with an evaluation of self-managed therapies of value to medical researchers who wish to apply for funding
The website questionnaire will remain open until September 1st. A paper version can be obtained from the MEA for people who do not internet access. Nearly 1,200 people have taken part so far but we still need more responses – especially from people who have taken part in a GET or pacing programme.
More details can be found in the August ME Essential and at https://meassociation.org.uk/?p=11824
MEA LITERATURE
A fully updated leaflet on Alternative and Complementary Therapies appeared in the May issue of the magazine. The August ME Essential contains a new Management File on gabapentin.a drug that is sometimes prescribed for moderate to severe pain when other options have not been successful.
The leaflet on Social Care has also been updated. Trustees thanked Cathy Stillman-Lowe for doing this. This also appears in the August ME Essential.
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 at www.meassociation.org.uk/?page_id=1345. Extra paper copies can be obtained from the MEA at a cost of £2 each. 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.
ME Awareness leaflet
We now have a new MEA leaflet that has been prepared by BS and NS. The content concentrates on putting across to the general public what ME is and the devastating consequences it can have on an individual – illustrated by the case of Nicki’s son Jamie. Trustees thanked Jamie for his input on this as well. To pilot its effect. we are going to distribute a copy to every house in the village near Buckingham where the MEA is based.
ME Alert Card Trustees agreed to make some minor changes to this very popular credit-size card at the next reprint. This will include a reference to problems with standing.
Blue Ribbons Trustees agreed to discontinue selling blue ribbons when current stocks are finished and consider producing a high quality blue ribbon lapel badge.
Dr Melvin Ramsay's book on the history of ME
Reprinted stock 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 have now arrived in Buckingham. This book, which also covers some of the other famous outbreaks around the world, can be obtained using the MEA literature order form. It cannot be purchased in shops.
Kay Gilderdale book Copies are available on our literature order form. A review of the book cam be read at www.meassociation.org.uk/?p=7844
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 previously led a discussion 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 February question asked about volunteering to take part in a UK clinical trial of rituximab. The March question asked about where people fit onto our disability rating scale. The April question is asked people to rate their experiences at NHS hospital-based referral clinics/centres. The current (August) question asks about the type of written information that is provided when someone is seen at an NHS specialist service.
Results from all the previous on-line surveys can be found on the MEA website. If anyone has any suggestions for future website polls please let us know.
ME CONNECT
Regular ME Connect training sessions are taking place this year – with funding coming from the Christmas Challenge event. The first session was on management issues. The second, carried out by an employment lawyer, covered employment and occupational health issues from the legal point of view. Future training sessions include one on symptomatic management.
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 the website changes that were introduced during the year. This resulted in many office emails no longer going via ME Connect.
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 contact us via administration@meassociation.org.uk
ME ESSENTIAL MAGAZINE
TB reported on plans for the August issue, which will be mailed out shortly.
Among the medical contents for August are items on:
* Acyclovir and herpes infections
* Change in appetite
* Attending Appeal Tribunals
* Hypnotherapy
* Is ME/CFS an illness or disease?
* Overactivity in the immune system
* Oxygen concentrators – are they safe?
* Pace trial and ME
* Sodium oxybate for sleep disturbance
* New leaflets on Gabapentin and Social Care (fully updated)
The next issue will appear in November. The final copy date for this issue will be the beginning of October.
MEDIA
BBC Alba television in Scotland transmitted two well received documentary programmes covering various aspects of ME/CFS on January 24th and January 31st. The MEA was heavily involved in the preparation of these programmes and CS recorded his input in Glasgow.
Our complaint to the Press Complaints Council relating to the Daily Telegraph was rejected. More information can be found on the MEA website: www.meassociation.org.uk/?p=9393
The MEA also sent in a formal complaint to to the Press Complaints Commission regarding the inflammatory item by Rod Liddle about benefit reform and the illness ME in his weekly column for The Sun.
The paper published the letter from The MEA on Wednesday 1 February.
As a result of our formal complaint to the PCC the paper produced a sympathetic and informative feature on ME/CFS which included several true life stories. One of those involved was the son of associate trustee, Nicki Strong, who personally went up to London to visit the paper and deliver a DVD of the film Voices from the Shadows. We are no longer pursuing this complaint.
Social Media Trustees held a brief discussion on the way in which we currently make use of social media – MEA website, MEA Facebook, Twitter – and the way in which this needs to expand to reach people who now obtain much or all of their information through social media.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
RITUXIMAB
CS updated trustees on MEA initiatives that have been taking place since publication of results from the clinical trial that took place in Norway.
The MEA has worked with UK representatives of the Norwegian research group in order to obtain media publicity for the trial results. Examples include coverage via the BBC, New Scientist and Daily Mail.
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 encouragement to the need to set up a UK trial and this was discussed with Sir John Savill when he attended an APPG on ME meeting earlier in the year.
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. Rituximab was also discussed in some detail at the closed research meeting that CS attended in New York in June – see earlier meeting reports.
The MEA has made it clear that the Ramsay Research Fund is very happy to look at funding proposals for a UK clinical trial. Preliminary discussions have therefore taken place with researchers who may be willing to organize some form of further clinical trial – even if this was small in number given the enormous costs involved.
Unfortunately, this initiative has not progressed into a formal application for funding being received. Trustees have discussed a number of other options to try and stimulate interest here in the UK – including the possibility of raising guaranteed financial support, which would need to be well in excess of £200,000, from UK a group of research funding ME/CFS charities.
A note of caution: This is one small clinical trial. We need to see the results from further clinical trials before coming to any firm 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.
Our Question and Answer item on the rituximab trial can be found at www.meassociation.org.uk/?p=8459
XMRV and MLV
With a considerable number of negative XMRV validation studies now published, most virologists working in this area are querying whether XMRV is a disease causing infection and dismissing any possible link to ME/CFS. Here in the UK many virologists now accept the laboratory contamination theory. CS reported that we are still 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 and final conclusions about XMRV and ME/CFS. Results from this study were expected to appear in July but this has not occurred.
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
CS reported that contractual arrangements involving the MRC and MEA have now been agreed. We have asked the research group to provide a lay summary of this research for the next issue of ME Essential magazine.
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
Abstract:
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.
Abstract
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 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 ever transpires that a retrovital infection is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place.
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
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 at: 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.
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.
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 – have 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.
CS reported on 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 £40,00 in funding to continue this work for a further year
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.
Abstract: http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032
Plans for the post-mortem tissue bank are 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. More information should appear in the November ME Essential.
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.
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.
New research proposal involving exercise-induced fatigue and post-exertional malaise
At the April Board meeting trustees discussed a peer-reviewrf 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 have now agreed to fund the study – which will be carried in two European centres. 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.
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 ME Essential.
Secondly, a meeting has been called for late September to take forward the idea of setting up an ME/CFS research collaborative that would bring together a wide range of people – including scientists, 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 news archive on the MEA website and in the January ME Essential.
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:
hwww.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 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
Provisionally fixed for Monday and Tuesday, 1st and 2nd October.
Summary prepared by Dr Charles Shepherd, Trustee and Hon Medical Adviser
13 August 2012
Preparing this summary must have taken considerable time and effort – thank you CS.
My thanks too, Charles.