The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) takes place on Tuesday and Wednesday, 10 and 11 May 2011. A copy of the Agenda for this meeting will be posted as soon as it becomes available.
“Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.”
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:
• factors affecting access and care for persons with CFS;
• the science and definition of CFS; and
• broader public health, clinical, research and educational issues related to CFS.
• Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.
Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.
[Federal Register: March 22, 2011 (Volume 76, Number 55)]
[Notices]
[Page 15982]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr22mr11-88]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
———————————————————-
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Health.
ACTION: Notice.
SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.
DATES: The meeting will be held on Tuesday and Wednesday, May 10 and 11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10, 2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.
ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201. For a map and directions to the Hubert H. Humphrey building, please visit http://www.hhs.gov/about/hhhmap.html .
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .
SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.
The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs when it is finalized. The meeting will be broadcast over the Internet as a real-time streaming video. It also will be recorded and archived for on demand viewing through the CFSAC Web site.
[Ed: the real-time streaming also has real-time auto transcription.]
Public attendance at the meeting is limited to space available.
Individuals must provide a government-issued photo ID for entry into the building where the meeting is scheduled to be held. Those attending the meeting will need to sign-in prior to entering the meeting room.
Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.
Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.
Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via e-mail to cfsac@hhs.gov . Time slots for public comment will be available on a first-come, first- served basis and will be limited to five minutes per speaker; no exceptions will be made. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov prior to the close of business on Monday, April 18, 2011.
If you do not submit your written testimony by the close of business Monday, April 18, 2011, you may bring a copy to the meeting and present it to a CFSAC Support Team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.
Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at cfsac@hhs.gov prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to cfsac@hhs.gov
All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site and made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other individually identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.
• The Secretary should ask the blood community to defer indefinitely from donating any blood components, any person with a history of chronic fatigue syndrome.
• The Secretary should recognize the special challenges of ensuring that CFS is part of any efforts to train or educate health care providers under health reform.
• The Secretary should direct CMS, AHRQ, and HRSA to collaborate on developing a demonstration project focused on better value and more efficient and effective care for persons with CFS. This can be a public-private effort, and monitoring outcomes and costs should be part of the overall evaluation.
• The Secretary should ask the Designated Federal Officer to explore adding a web-based meeting to conduct CFSAC business.
• CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).*
*DFO Note: The ICD 10-CM is scheduled for implementation on October 1, 2013. In that classification, two mutually exclusive codes exist for chronic fatigue [sic]:
post-viral fatigue syndrome (in the nervous system chapter), and chronic fatigue syndrome, unspecified (in the signs and symptoms chapter).
HHS has no plans at this time to change this classification in the ICD 10-CM.
The specific recommendations articulated by the Committee are:
• Develop a national research and clinical network for ME/CFS (myalgic encephalomyelitis/CFS) using regional hubs to link multidisciplinary resources in expert patient care, disability assessment, educational initiatives, research and clinical trials. The network would be a resource for experts for health care policy related to ME/CFS.
• Engage the expertise of CFSAC as HHS moves forward to advance policy and agency responses to the health crisis that is ME/CFS.
• Adopt the term “ME/CFS” across HHS programs.
Memo from Secretary Sebelius to Christopher Snell, CFSAC Chair, on the October 2010 Meeting
Summary of MEA Board of Trustees meetings held in September 2010
This is a summary of key points to emerge from two routine meetings of The ME Association Board of Trustees.These meetings took place at our Head Office in Buckingham on Monday afternoon, September 6 and on Tuesday morning, September 7 2010. This is a summary of the 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 background information relating to the issue being discussed.
The final part of the summary also contains key points from the AGM held on Tuesday afternoon, results of trustee elections, and the post AGM Board of Trustees meeting.
PRESENT
Trustees:
Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman by telephone link.
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
MEA Officials:
Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager
Apologies:
Rick Osman (RO)
Janet Thomas (JT)
FINANCES, ADMINISTRATION, PREMISES AND STAFF
ED updated trustees on the current financial situation. This was followed by a discussion on the monthly management accounts for the period up to the end of July 2010. There has been a continuing drop in some areas of income during the first seven months of 2010 when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is still running slightly ahead of unrestricted income.
Income from fundraising has shown a continuing and welcome increase over the same period in 2009. In order to cope with the increased demand on fundraising support services a new part-time post to deal with fundraising administration has been created. Applications for the new post are now being considered.
There has also been a significant increase over the past seven months in the ring-fenced funding held by the Ramsay Research Fund.
Trustees reviewed the changes in banking arrangements, aimed at improving interest received on deposit accounts, that have been carried out in the past few weeks in relation to both unrestricted general funds and restricted research money held in the Ramsay Research Fund.
Trustees held a further short discussion on some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.
Trustees passed on their best wishes to Lucy Kingham at Head Office – who is taking maternity leave in September – and finalised arrangements for a temporary member of staff to cover her absence.
MEA TRUSTEES
Trustees had intended to spend part of Monday afternoon interviewing a potential new trustee but he was unable to attend. This interview was therefore postponed to a later date.
As reported previously, Janet Thomas had to withdraw from the 2010 trustee election due to ill health but will remain as an observer. It was agreed that she has been an excellent trustee and it is hoped that she will re-apply if her health improves.
We are still able to increase the number of co-opted trustees – so we are keen to hear from anyone who would like to discuss the possibility of joining the MEA in this role. Applications are welcome from people with ME, carers, and anyone who has a skill which they feel could be of benefit to the charity. In order to proceed with an application, non- members would have to become members of the MEA.
FORWARD PLANNING
A further short discussion on the future growth of the MEA was held on Tuesday. This work includes the expansion of the services we already provide and new services that we would like to provide if/when the financial situation allows us to do so.
FUNDRAISING INITIATIVES
The MEA has to raise funds on top of membership subscriptions, which currently only provide around half of the general income that is required to fund the basic running of the charity and Head Office administration. We are also facing a situation whereby people are reducing donations to the charity sector. At the same time, demand on support and information services is increasing, especially in relation to benefit and employment information now that the welfare/benefit reforms and difficulties associated with the introduction of the ESA are taking effect. Trustees and staff therefore have to devote a significant part of their time to boosting fundraising activities in order to maintain our current level of services.
Northern Ireland fundraising for ME/CFS research. Mid Ulster Vintage Vehicles Tractor and Car Club: Sponsored trek from Moneymore to Castlerock-Limavady
TB reported on the outcome of the Mid-Ulster Vintage Vehicles Club’s 100-mile vintage tractor and car trek, which this year has raised a substantial sum for the Ramsay Research Fund. The event started in Moneymore on Saturday 23rd July and finished the following day in Castlerock-Limavady. A tremendous effort has been put in by the O’Neil family – father John, sons Ronald and Richard and daughters Jacqui and Fiona. Following a request from the organisers, TB and CS will be travelling to Northern Ireland later this month for the presentation ceremony.
More information on this important fundraising event appeared in the July issue of ME Essential magazine.
2010 London Marathon
The MEA paid for two guaranteed places in the 2010 London Marathon – so we had two runners taking part as well as several other people running who raised money for The MEA. We would welcome offers from anyone who wants to raise funds in 2011 but we are not paying for any guaranteed places next year.
Amazon Walk to raise funds for a tissue and post-mortem/brain bank:
BS reported on the return of her son Ed, following completion of his epic Amazon Walk. Ed has walked solidly for 859 days and covered around 6,000 miles. He is the first person to carry out what has been an outstanding physical and mental challenge and he will quite rightly enter the history book of hazardous expeditions.
On his return in early August Ed appeared on a number of radio and television programmes – including GMTV, BBC Breakfast Time and the BBC One Show – and his story has been given extensive coverage in the UK and international press. A full summary of media coverage can be found on the MEA website news section.Ed’s progress can still be be seen on his Amazon Walk blog >> http://www.walkingtheamazon.com
Trustees discussed a number of ideas for possible fundraising events following his return home. One of Ed’s first talks on the Amazon expedition will be given to a meeting of the Transglobe Expedition Trust at the Royal Geographical Society in November, where he will be joined by the distinguished explorer Sir Ranulph Fiennes and Michael Palin.
Ed Stafford has a fundraising page for MEA/RRF research here. Around £8000 has been raised so far.
Vegepa for ME scheme The Vegepa for ME Scheme is proud to announce a new partnership with the ME Association’s Ramsay Research Fund to run alongside their long-standing enterprise with ME Research UK in a joint effort to improve the lives of ME sufferers. From August 2010, The Scheme, which has donated over £36,000 since it started up in 2006, will be raising money for crucial biomedical research undertaken by both of these ME charities. The Vegepa for ME Scheme, devised and run by Lynne Kersh, mother of a daughter with long-term ME, has a secure website which sells clinical-grade, patented Vegepa and its various sister products.
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 John Lewis, M&S, and Amazon via the MEA website is simple and we receive a commission of up to 15% from the shop at no charge whatsoever to the purchaser. Please give it a try! It only takes a few seconds to register for the service on the Easyfundraising.com website.
Mobile phone and ink cartridge returns and trolley coins MD reported on the latest financial returns from these on-going fundraising initiatives. Returns of ink jet cartridges continue to be a very successful source of income – so please keep sending them in. Trolley coins can be ordered using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the literature order form insert in the August issue of ME Essential magazine, or by phoning MEA Head Office on 01280 818964/818968. Envelopes for the return of ink cartridges and mobile phones can be ordered using the literature order form.
Christmas cards We have three cards for sale this year – details and pictures in the October issue of ME Essential magazine. A pdf order form can be downloaded the MEA website by clicking here.
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.
Summer Raffle This was drawn at the end of July and the winner of the first prize kindly sent the same amount back to the MEA!
Fundraising information Fundraising leaflets are available for use at events and for approaches to sponsors and requests for donations. Free copies can be obtained by phoning MEA Head Office on 01280 818968.
PARLIAMENTARY MATTERS
APPG CS updated trustees on events that had taken place to set up a new APPG on ME following the General Election. This involved finding a new Chairman because Dr Des Turner had retired at the election, as well as finding a small group of other parliamentarians willing to take up the post of Treasurer, Secretary etc.
An inaugural meeting was held on 8 July – shortly before Parliament broke up for the long summer holidays. Those present agreed that David Amess MP would take on the role of Chairman. Other officers elected: Annette Brooke MP (Vice Chair); John Leech MP (Secretary) and Martin Vickers MP (Treasurer). A copy of the Minutes for this meeting can be found in July ME Essential magazine and on the MEA website. The current list of members of the new APPG can be found here.
A planning meeting was proposed for September but no date has yet been fixed.
Further details of the agenda, time, venue for the next full APPG will appear on the MEA website as soon as they become available. It is advisable to check with the MEA website the day before APPG meetings in case any late changes are made.
Neil Riley, Chairman of the MEA, wrote to Dr Des Turner to express our thanks for chairing the APPG and wishing him a happy retirement from Westminster.
The August MEA website poll asked people what they felt was the most important topic for the new APPG on ME to take on. Votes were as follows:
These results have now been forwarded to David Amess, along with a summary of recent developments relating to benefits, research, NICE guidelines, Lightning Process research etc.
APPG Inquiry into NHS Services Trustees previously agreed to help fund the production of some paper copies of the report because we believe this information should be readily available to members of the public who do not have internet access. A paper copy of the final report has been added to the MEA literature list (as a free item) in ME Essential.
The report can also be downloaded from the MEA website or the APPG website: http://www.appgme.org.uk
Countess of Mar’s Group: FORWARD ME The meeting planned for Wednesday 7th July, at which the group intended to discuss a range of current issues, had to be cancelled due to the Countess of Mar being unwell. A new date has not yet been arranged for this meeting.
The Forward ME Group website >> http://www.forward-me.org.uk has information about the group and archives of minutes from past meetings, including a detailed summary of the presentation on benefit issues (ICB and ESA in particular) from Dr James Bolton, Deputy Chief Medical Adviser at the DWP, to the last meeting.:
BENEFITS
Trustees discussed the current situation regarding benefit problems, the changeover from ICB to ESA starting in October, and the Independent Review of the WCA. A copy of the MEA submission to this review can be found on the MEA website here.
NICE GUIDELINE REVIEW
CS reported on correspondence with NICE regarding the date of the proposed guideline review. A copy of our most recent reply from NICE dated 23 August can be found on the MEA website here.
RESEARCH AND RAMSAY RESEARCH FUND (RRF)
RRF: XMRV and MLV: Trustees discussed the latest XMRV research results from validation studies that have been reported in the medical journals – in particular the results from the study by Lo et al that supports a link between retroviral infection (XMRV or MVL) and ME/CFS. The MEA summary and statement on this paper can be found in the website news section here.
The role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate the American findings, or do other relevant work on XMRV was discussed. CS reported on the various contacts and discussions he is continuing to have with virologists on how best to take this research forward in the UK – including the current initiative to retest anyone here in the UK who has sent a blood sample to the US laboratory. The MEA has issued regular website position statements on XMRV and will continue to do so. We have also written to Sir Liam Donaldson, the previous Chief Medical Officer at the Department of Health, about the XMRV research findings and the implications for blood donation and blood transfusion. We have now written to Dame Shirley Davies, the new acting CMO, about extending the blood donation ban to people who have recovered from ME/CFS. A reply from the new CMO states that the current ban will be extended to include anyone with a past history of ME/CFS as from 1 November. This will cover the whole of the UK.
CMO correspondence.
RRF: Professor Julia Newton et al, University of Newcastle CS reported that assessments have been performed on 25 subjects who have been recruited via the Northern Regional ME/CFS Clinical Service. The initial assessment procedures include testing autonomic nervous system function, muscle performance, exercise physiology and body composition (ie the amount of fat and muscle present). The next phase of the study will involve the use of magnetic resonance spectroscopy to assess the way in which their muscle is producing energy and lactic acid. Further information on this study can be found in the August 2009 issue of ME Essential magazine.
RRF funding = approximately £13,800.
Newcastle University Fatigue Research Symposium: Dr Shepherd met Professor Newton at this research meeting which was held on Thursday 10th June at the University of Newcastle. There were 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) and this is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July issue of ME Essential magazine and on the on the MEA website here.
An abstract from a new research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle can be found on the MEA website here:
RRF: Factors involved in the development of severe ME/CFS The results of this questionnaire based research, carried out by Dr Derek Pheby and Dr Lisa Saffron, and funded by The ME Association, have been published in an open access on-line journal. More information, including a link to the paper, can be found on the MEA website here.
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 a study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, were published in the open access scientific journal, BMC Medical Genomics.
Although RRF funding has now finished, we remain in contact with Professor Gow and colleagues in Glasgow regarding further work in this important area.
RRF funding = approximately £38,000.
RRF: Post-mortem tissue bank feasibility study CS updated trustees on phase two of the feasibility study into the setting up of an ME/CFS brain and tissue bank. This has included a focus group meeting which allowed a group of people with ME/CFS to freely express their views on the various ethical, legal and practical issues surrounding tissue and post-mortem research. Work on phase two commenced in February and is being carried out by Dr Luis Nacul and colleagues at the London School of Hygiene and Tropical Medicine. An article summarising all the various MEA post-mortem research initiatives that are taking place can be found on the research section of the MEA website. An article on phase two of this research appears in the February 2010 issue of ME Essential.
Trustees also discussed the various post-mortem research examinations, along with plans for publication, that we have been involved with. CS reported that results from four post-mortems will be presented and discussed at an international conference later in the year.
The next meeting with the researchers involved will take place on September 9th.
RRF funding = approximately £14,000.
ME Observatory Steering Group The final stages of this work are proceeding to plan with several research papers being prepared or submitted for publication. The last MEO meeting discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular – when Lottery funding ends in September. The Disease Register now has around 500 people with well characterised ME/CFS – new cases recruited from primary care and others with chronic severe disease via the CHROME database – and it is hoped that this important work will continue and be of use to the researchers in due course.
The ME Observatory has arranged a half day Dissemination Conference that will also cover issues relating to work, welfare and DWP benefits. This event has CPD (continuing professional development) accreditation and will take place in London on Saturday afternoon, 25th September. A senior person from the DWP that deals with ESA will be giving one of the presentations at this event.
Two MEO workshops will be taking place on 28 September (in Sheffield) and 29 September (Birmingham). The next MEO Steering Group meeting will be held on September 9th.
Medical Research Council (MRC) Expert Group on ME/CFS Research Two follow up meetings relating to the two day research workshop that was held on November 19th and 20th 2009 have been held. The minutes of the last meeting, which outlines priorities identified for MRC funded research, can be found on the MRC website. Summaries of the presentations and slides used at the November workshop are available on the MRC website. Further information on the MRC Expert Group can be found on page 12 of the May issue of ME Essential and on the MEA website here.
We are now awaiting a statement from the MRC as what action they propose to take on the recommendations for research priorities that have been made by the Expert Group.
Lightning Process Trustees held a further discussion on a new research study that has been announced into the use of the Lightning Process. Costing £164,000, the feasibility study will investigate how children and adolescents could be involved in a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns have been raised about the possible use of children and adolescents in this type of study and we are discussing this with our colleagues in other ME/CFS charities. As a result of these discussion the MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern, which can be found here.
This was sent to the Department of Health with a request that it should be forwarded to the ethics committee that is dealing with the application. The DoH have refused to do so – a decision which we believe is unacceptable.
FINE AND PACE Trials Responses to publication of the results from the FINE trial have appeared on the BMJ website, including one from The MEA. Trustees discussed the way in which results from the MRC funded FINE and PACE trials are likely to affect a review of the NICE guideline on ME/CFS. Responses to the results of the FINE trial can be accessed via the MEA website here.
We understand that results from the PACE trial will be reported to the BACME conference in October.
Biochemical and Vascular aspects of paediatric CFS
Trustees briefly discussed the University of Dundee research findings relating to infection and inflammation in children with ME/CFS that had received widespread media publicity on the BBC on Tuesday morning. CS also did some BBC interviews during the day, including Radio 5 Live during their lunchtime news programme. More information on this research can be found on the MEA website.
Sleep Disorders Conference CS has been invited to attend an important clinical and research conference in London in December that will be discussing all aspects of sleep disorders.
*
The MEA is now 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.
SCOTTISH MATTERS
ED reported on publication by the Scottish Health Department on 1 September of clinical guidance on ME/CFS for doctors in Scotland – a document that had originally been based based on the MEA purple booklet for health professionals: ME/CFS/PVFS: An Exploration of the Key Clinical Issues. Publication of the Scottish Public Health Network Needs Assessment has not yet taken place As noted in previous MEA Board meeting reports, the timescale for both projects had to be re-organised in 2009 and progress has been considerably delayed as a result.
Trustees discussed the content of the Scottish Good Practice Statement and the feedback so far from patient representatives that have been involved in their development. A preliminary MEA statement can be found on the MEA website here.
ED will be attending a meeting of the Cross Party Group committee on Wednesday 8th September and the full meeting of the CPG on Wednesday 22 September where the documents will be discussed.
MEA ANNUAL MEDICAL MEETING IN CARDIFF
Trustees finalised arrangements for our annual medical meeting. This is an open and free meeting in an ‘ME Question Time’ format that we rotate around the country. Panel members will be Jane Colby (Tymes Trust), Sue Luscombe (Dietician), Neil Riley (Chairman, MEA), Dr Charles Shepherd (Hon Medical Adviser, MEA) and Dr Nigel Speight (Hon Paediatric Adviser, MEA). This year we are co-operating with the Welsh group WAMES and holding the meeting in Cardiff on Saturday 23rd October. More information can be found on page 3 in the July issue of ME Essential magazine or on the MEA website.
If any local groups are interested in co-hosting this meeting in 2011 please let us know.
MEA LITERATURE
The latest MEA Management File on Fatigue (involving both brain and muscle) appears in the July issue of ME Essential. A new Management File on the subject of XMRV and MLVs is now being prepared for the October issue of ME Essential.
An updated leaflet on dental anaesthetics has been prepared by Dr Richard Cantillon, our dental adviser.
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 was distributed free as part of the May issue of ME Essential. It can also be downloaded from the MEA website – where over 3,000 people have already viewed the report. Extra paper copies can be obtained from the MEA at a cost of £2.50p. This research was funded by the Ramsay Research Fund – so any profits will go to the Ramsay Research Fund.
The October 2009 version of ME/CFS/PVFS – An Exploration of the Key Clinical Issues is continuing to be well received. This 36 page booklet for both doctors and people with ME/CFS contains references to all new research and treatment developments up to October 2009, including a prominent boxed section on the XMRV research findings. The MEA medical guideline is therefore the only substantial publication of this nature covering research, clinical assessment and management to also include XMRV research. As before, The MEA is willing to make a reduction in price for bulk orders from local groups, other ME/CFS charities and PCTs.
MEA literature can be obtained using the website pdf ORDER FORM or the 8-page order form insert in the July issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.
MEA WEBSITE
Trustees discussed various matters relating to The MEA website.
The regular on-line survey feature remains very popular. Previous polls have asked about attitudes to post-mortem research (February 2009); GP skills and knowledge (March 2009); how much people have spent on services/treatments outside the NHS (May 2009), Vaccines as trigger factors (May 2010)and opinions on DWP medical assessments that have been carried out by ATOS. The current (September) question asks for opinions on how employers view ME/CFS . 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
Trustees reviewed the administration of telephone calls and emails received by ME Connect, our information and support service. Up to the end of July 2010 the service dealt with 1151 emails and 1727 phone calls – a total of nearly 3000 enquiries so fat this year. A recent check on telephone response times audit indicated that almost all calls were being answered either immediately or within a few minutes. However, there will always be occasions when a delay is inevitable due to the volunteer on duty having to deal with a difficult call.
ME Connect, our telephone information and support service, operates every day of the week from 10am – 12 noon; 2pm – 4pm and 7pm – 9pm. Tel: 0844 576 5326.
We are always keen to hear from anyone who would like to join ME Connect as a volunteer. If you are interested please contact the MEA via ME Connect
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ME ESSENTIAL MAGAZINE
TB reported on plans for the October issue of ME Essential. Any remaining copy must be with Tony by the middle of September. We are aiming for publication in the middle of October.
The Editorial Board is always happy to receive constructive comments about any aspect of the magazine.
NEW SHORT FILM ON ME : ‘ALL ABOUT ME’
This is a new short documentary film (in two parts) about Laura Fursland, a very promising young music student who developed ME following an episode of glandular fever, with complications, at the age of 18. The film deliberately concentrates on Laura’s story and how it has affected all aspects of her life – in particular how her life is now “on hold” and her plans to go to university to study music.
The medical input – covering key symptoms, possible causation, drug treatments and the losses/social isolation of living with ME at this age – is briefly inserted at various points. The film is not intended to focus on the medical and science behind ME/CFS.
This film was made by Teesside University with information being provided by the MEA.
McCarrickFilms | 14 August 2010
(Part 1/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…
McCarrickFilms | 13 August 2010
(Part 2/2) A documentary about M.E sufferer Laura Fursland. A promising young music student…
MEA HEAD OFFICE: VOLUNTEERS WANTED
In addition to the telephone volunteers who deal with ME Connect enquiries, we have a small number of dedicated volunteers who come into the MEA office in Buckingham on a regular basis to help with various aspects of our work. If you know of anyone who lives locally to Buckingham, and would like to come into the office and help out on a flexible basis please get in touch with Gill Briody. The MEA office is modern, on the ground floor of an out-of-town site, has disabled access, and good free car parking facilities on site.
DATE OF NEXT BOARD MEETING
Fixed for Monday and Tuesday, 15th and 16th November 2010.
AGM AND TRUSTEE ELECTION RESULTS
The Annual General Meeting of the charity took place on Tuesday 7 September at the Head Office in Buckingham.
Present
Ewan Dale
Mark Douglas
Neil Riley by telephone link
Charles Shepherd
Barbara Stafford
Tony Britton
Gill Briody
Agenda
The minutes of the previous AGM were agreed.
Neil Riley presented the Chairman’s report
Ewan Dale presented the Treasurer’s report
Auditors for the financial year ending in December 2010 were appointed
Trustee Elections
Ewan Dale: 389 votes in favour, 12 votes against
Charles Shepherd: 410 votes in favour, 2 votes against
11 abstentions
5 votes not accepted due to membership not being renewed
11 votes not accepted as received after the closing date
Both candidates were elected
A full report on the AGM will appear in the October issue of ME Essential
POST AGM BOARD MEETING
Neil Riley re-elected as Chair
Ba Stafford re-elected as Vice Chair
Ewan Dale re-elected as Treasurer
Gill Briody re-elected as Company Secretary
Summaries prepared by Dr Charles Shepherd, Trustee
XMRV is Not the retrovirus identified by De Freitas et al.
the publication and patent submitted by De Freitas et all clear describe the molecular characteristics of a retrovirus that is not a gamma (type C) retrovirus. The patent submitted for the retroviruses states
“Chronic Fatigue Immunodeficiency Syndrome associated virus, hereafter referred to by the name CAV may be morphologically characterized as a retrovirus, particularly a non-C retrovirus which is capable of infecting humans. Electron microscopy of viral particles formed in infected human cell cultures suggests that CAV is a non-C type retrovirus because of its diameter, morphology, formation and location of intracellular virions. The Electon micrographs of XMRV shown in Lombardi et al clearly depict a budding type C retrovirus of 90-100microns The DeFritas patent goes on to say “More specifically, CAV-infected cells could be characterized by electron-dense circular virions, some with electron-luscent cores and others with electron-dense cores, associated with the rough endoplasmic reticulum and inside large abnormally distended mitochondria in the cells. All particles are the same shape and size, 46-50 nm. No extracellular virus is observed. No forms budding from the cytoplasmic membranes are observed.
Thus, CAV-infected cells could also be charcterized by the presence of intracytoplasmic particles”Gamma (type C) retroviruses are 90 1100uM as shown in Lombardi et al and all are shown to consist of electron dense cores and specifically to bud extra-cellularly not intracellularly.
The data describes in the Defreitas patent can be found at:
Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]
Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.
In 2008-09 the MRC’s total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to £728,000. This supported four projects including a £164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.
The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.
The MRC’s National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.
Response from Dr Charles Shepherd to concerns from member of the ME community:
Neil [Riley, Chair MEA Board of Trustees] has asked if I could respond to your email to the MEA about patient selection in XMRV research that might be funded by the RRF.
This is a complex issue and I’ve tried to explain the situation in rather more detail in version 4 of the MEA position statement, which is now up on the MEA website: http://www.meassociation.org.uk
Very simply, we are looking at a two stage research situation that will hopefully clarify the situation regarding XMRV prevalence in the ME/CFS population at some point in 2010, and (depending on the results) then move on to looking at viral pathogenicity in more detail (ie is this a disease causing virus?) and antiviral treatment. Incidentally, the results of a new research study looking at the use of AZT as a possible treatment for XMRV will be up on the MEA website later today: www.meassociation.org.uk .
As you know, the WPI study used patients who met both Fukuda research criteria and Canadian clinical criteria – partly because scientific journals don’t accept the validity of the CCC as a valid research tool..
Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material >> stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any. So there was no point in the MEA insisting that research funding in stage one could only be used in studies involving Canadian criteria patients, or CC + Fukuda.. I therefore suggested that these ‘first off the mark’ studies should only involve Fukuda criteria patients as here in the UK there is a real worry that retrovirologists, who have very little general knowledge of ME/CFS, might be using samples from patients from NHS sources that meet either Oxford research or even NICE clinical criteria – the latter being used by the NHS clinics. It would have been helpful if the paper itself had carefuly specified the selection criteria because I know that there are researchers taking this forward on the basis that CFS in the paper = CFS Fukuda.
As far as the second stage is concerned, we would certainly be looking at funding a study that would use Fukuda plus Canadian criteria but there are still going to be major problems and we cannot be dogmatic here. This is because the NHS services do not use Canadian criteria in their clinical assessments and most of us who work in the UK private sector don’t have sufficient numbers of new patients coming through to quickly build up a decent number (ie 100 cases) meeting both criteria, and we don’t tend to be dogmatic about the use of criteria in patients already diagnosed.
And this may be why MERUK has decided to fund a study in Sweden rather than here in the UK. The MEA would prefer to fund UK XMRV studies but we are willing to look at overseas proposals – as has already happened.
As you will have seen I have spent a great deal of time over the past few weeks talking to virtually all the virologists and retrovirologists here in the UK that are interested in taking this work forward, and the MEA is very keen to help in whatever way we can. I hope the researchers are now well aware of the issues surrounding careful patient selection (some of them were definitely not) and not just the science behind XMRV.
I hope you find this helpful.
I would be happy to discuss in more detail if you would like to call me on my home number when convenient.
Regards
Dr Charles Shepherd
Hon Medical Adviser, MEA
(This information may be forwarded if you wish to do so)
Version 4 of the MEA position statement on XMRV clarifies some of the points and queries raised in the previous three summaries. Version 4 also updates the situation on XMRV research in the UK, testing for XMRV, and refers to our correspondence with the Chief Medical Officer regarding blood supplies and blood donation.
This summary is intended to be a balanced account of the current situation. It therefore not only raises questions but is also very cautious when it comes to drawing any firm conclusions about the role of XMRV in ME/CFS as either a diagnostic marker, causative agent, or abnormality that requires active treatment with antiviral medication.
[…]
ROLE OF ME RESEARCH UK (MERUK) and IRISH ME TRUST
MERUK and The Irish ME Trust have just announced that they are providing joint funding for a replication study that will be carried out in Sweden. This work will be carried out by Professor Blomberg, Head of the Research Group of Clinical Virology, University of Uppsala and Professor Gottfries, from the Sahgrenska University Hospital, Molndal. The researchers will retrospectively test previously stored samples from 3 groups of patients (20 Fukuda defined ME/CFS; 20 fibromyalgia; 20 irritable bowel) and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients defined by Fukuda 1994 and Canadian 2003 clinical criteria. Results are expected in Spring/Summer 2010. More information on this study can be found on the MERUK website.
There is clearly an immediate need for international agreement and co-operation on the research criteria being used to select well-characterised ME/CFS patients for further research into XMRV. Otherwise, we could end up in spring/summer 2010 with a collection of conflicting results on prevalence because different international research groups have been using different patient selection criteria.
In the present situation, many research groups are reluctant or unwilling to use Canadian criteria. This is because these are essentially clinical criteria and in the eyes of many researchers they have not been validated for use in research studies as stand alone criteria. There is also the problem in that most research groups do not having ready access to stored blood samples from ME/CFS patients that meet Canadian criteria.
So the best way forward may be for everyone to agree to use either Fukuda-defined CFS – which would obviously help to define which sub-groups of patients are XMRV positive under this CFS umbrella – or, if possible, to use patients that meet both Fukuda CFS and Canadian clinical criteria. It is worth noting that a significant proportion of people with Ramsay-described ME will not meet Fukuda criteria for CFS – so they are likely to be excluded from research currently taking place.
We do not believe that it is sensible to extend the entry criteria into research studies by using the 2005 ’empirical’ definition of CFS for patient selection purposes as this will bring in an even more diverse group of patients who have chronic fatigue. This point has also been made by Dr Nancy Klimas when she addressed the CFSAC meeting in Washington in October.
Provided there is careful selection of ME/CFS patients, healthy controls and disease controls, we may then be able to draw some meaningful conclusions about which people who come under the wide clinical spectrum of CFS clinical presentation have XMRV and which do not.
Besides using stored blood samples, research needs to involve fresh clinical cases, as well as other disease groups (particularly inflammatory conditions with immune activation) and properly matched healthy controls.
Professor Tony Pinching, Action for M.E.’s Principal Medical Adviser, sets out his views on XMRV in this article from InterAction 70, published this week:
InterAction 70 Christmas 2009
Page 9
Potential virus breakthrough
We thought all our Christmases had come early in October, when researchers at the Whittemore Peterson Institute in Reno, USA announced that they had identified genetic material (DNA) from a mouse virus – murine leukaemia virus related virus or XMRV- in 68 out of 101 CFS patients (67%) compared to 8 out of 218 (3.7%) of healthy people.
Further blood tests showed that more than 95% of CFS patients have antibodies to XMRV, indicating they had been infected with the virus, which may then have lain dormant in their DNA.
Dr Judy Mikovits, research director, Whittemore Peterson Institute, is testing a further 500 blood samples collated from patients diagnosed with CFS in London.
In our press statement, quoted in part by the BBC, Sir Peter Spencer said:
“It is still early days so we are trying not to get too excited but this news is bound to raise high hopes among a large patient group that has been ignored for far too long.
“If the researchers can go on to prove a definitive cause and effect between this retrovirus and M.E., it will make an enormous difference to 250,000 men, women and children who have M.E. in this country.
“Action for M.E. has long been calling on the UK Government to invest more in research into the causes of this horrible illness. Once we know the cause, researchers can start working on more effective treatments, preventive measures and ultimately a cure for M.E.”
What does this research signify?
Professor Tony Pinching, Action for M.E.’s Principal Medical Adviser says the study needs to be confirmed by independent research and it would be very premature to think about clinical tests or treatments based on these early findings (see below). His caution is echoed in statements by Professor Andrew Lloyd, Director, Centre for Infection and Inflammation Research, University of New South Wales (see www.me-cfs.org.au/node/448 ), NCI director Dr John Niederhuber (www.cfids.org/temp/xmrv-guidelines-nci.asp ) and Dr Charles Shepherd, ME Association www.meassociation.org.uk (under ‘quick links’ on their home page). Professor Pinching comments:
“A new research report about CFS in a major science journal is obviously reason for some excitement. Many of you will have heard the news reports – some will have been hopeful, others sceptical, and many others unsure what to think. And that’s about the size of it too for the informed observer of the scientific data.
“In essence, a US study has shown apparent evidence of a virus (XMRV) in the blood cells of people with CFS, taken from a repository of samples from ‘well-characterised cohorts of patients.’
“XMRV is related to a class of mouse leukaemia viruses that have not been previously firmly associated with any human disease, although recently seen in some patients with prostate cancer. Although these viruses have been much studied in cancer biology, they can also be contaminants, although circumstantial evidence is against this here.
“67% of CFS patients compared with 4% of controls showed evidence of the DNA of this virus. Other evidence shows that the virus is actively expressed in patient cells, is capable of passing from cell to cell, and generates a detectable immune response in patients.
“The brief report lacks information about patient characteristics, and the comparability of patient and control samples, but the data seem plausible and internally consistent.
“However, much more work is needed to determine what these early findings signify. The first and most crucial test would be independent verification, through studies on large numbers of carefully characterised patients at other sites, preferably on fresh, not stored, samples.
“We also need studies on large numbers of both healthy people and people with other conditions. This is to clarify how specific the association is, and the extent to which XMRV occurs in other chronic immunological or neurological conditions.
“Biologically, there is no obvious mechanism that would link this sort of virus (very different from familiar viruses) to this sort of condition, although various plausible hypotheses could be devised. Most importantly, the virus could as easily be an effect of the illness, as it could be a cause or disease mechanism. An altered state of immune cells – from which the virus was derived – could activate an innocent passenger virus, for example.
“For the usual reasons, very preliminary research results have led to much speculation, inevitably raising hopes of people with CFS/ME. Loose talk of clinical tests and therapies based on these findings may reflect a genuine need for such things, but not any clear justification from the published science to date.
“So my thoughts so far are:
. this is interesting, but it first needs independent and substantive confirmation
. we don’t know whether XMRV is cause, effect, or just a passenger
. it would be very premature to think about clinical tests or treatments based on these early findings
. perhaps the most important thing is that this work will foster more high quality research on the biology of this clinically important but scientifically enigmatic condition.”
Professor Tony Pinching, for Action for M.E. InterAction 70 Christmas 2009
Ed: Please note that this list has been amended since this posting was first published as it contained transcription errors. If you have reposted the earlier version of this list, elsewhere, please replace with this corrected version.
MRC CFS/ME Research Workshop
19th and 20th November 2009
Participant list
Dr Neil Abbot – ME Research UK
Professor Jangu Banatvala – King’s College London
Dr Kate Bishop – National Institute for Medical Research
Dr Gijs Bleijenberg – Radbound University [Ed: Radboud Universiteit Nijmegen]
Professor Tim Cawston – University of Newcastle
Professor Trudie Chalder – King’s College London
Dr Charlotte Clark – Barts and the London
Professor Philip Cowen – University of Oxford
Dr Esther Crawley – University of Bristol
Professor Maria Fitzgerald – University College London
Dr Suzanne Hagan – Glasgow Caledonian University
Dr Kirstie Haywood – University of Warwick
Professor Stephen Holgate – University of Southampton
Professor Jim Horne – University of Loughborough
Dr Jonathan Kerr – St George’s University of London
Professor Paul Little – University of Southampton
Dr Samuele Marcora – Bangor University
Professor Chris Mathias – Imperial College London
Professor Paul Moss – University of Birmingham
Professor Rona Moss-Morris – University of Southampton
Dr Luis Nacul – London School of Hygiene and Tropical Medicine
Professor Julia Newton – University of Newcastle
Dr Derek Pheby – ME Observatory
Professor Anthony Pinching – Peninsula Medical School
Professor Chris Ponting – MRC Functional Genomics Unit
Professor Alan Rickinson – University of Birmingham
Dr Charles Shepherd – ME Association
Dr Vance Spence – ME Research UK
Sir Peter Spencer – Action for ME
Dr Jonathan Stoye – National Institute for Medical Research
Professor Chris Ward – University of Nottingham
Professor Peter White – Barts and the London
Mary-Jane Willow – Association of Young People with ME
The MRC held a small research workshop for CFS/ME on the 19 and 20th November 2009. The agenda, papers and meeting participants can be found at the links below
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9
Note of the Workshop to follow
—————
[Ed: Note this is an unofficial note of the procedings prepared by Dr Charles Shepherd MEA, not the official MRC note of the Workshop.]
MRC Expert Group on ME/CFS: Brief Notes on Research Workshop held on 19/20 November 2009
Monday, 23 November 2009 16:42
The Medical Research Council’s Expert Group Workshop on ME/CFS Research took place on Thursday 19 November and Friday 20 November at Heythrop Park, Oxford. Around 30 researchers and clinicians from various disciplines, plus MRC staff, took part.
Besides those with existing expertise in this area, there were others present who were new to the subject and consequently brought fresh thinking to the issues and questions being discussed.
PRESENTATION SUMMARIES AND SLIDES
The MRC will be publishing summaries and slides from all the main presentations that were given – once this information has been checked and approved by those who gave the presentations.
I understand that the MRC will also be publishing a full list of everyone who attended this meeting.
The MEA website will carry a suitable link in our news box when all this information appears on the MRC website.
PRESENTATIONS
There were presentations followed by discussions on the following key topics on the first day:
Epidemiology and clinical phenotyping – Dr Esther Crawley
Autonomic dysfunction – Professor Julia Newton
Sleep – Professor Jim Horne
Pain – Professor Maria Fitzgerald
Neuropsychology – Professor Gijs Bleijenberg
Neuroimaging – Professor Phil Cowen
New technologies – Professor Chris Ponting
Immune system dysregulation and infection – Professor Tony Pinching
Virology – Professor Paul Moss
Although not covered by specific presentations, a number of other topics – including muscle abnormalities, mitochondrial dysfunction, post-mortem and tissue bank research – were referred to, along with the way in which patients under the ME/CFS umbrella should be defined and selected to take part in research studies.
The second day consisted of group discussions which considered the following topics:
capitalising on current issues and UK strengths in the area of ME/CFS research
the use of new technologies
partnership models
research prioritisation
Each group then reported back to facilitate a whole group discussion.
The meeting closed with a summing up and an explanation of the next steps forward from Professor Stephen Holgate, Chair of the MRC Expert Group.
BACKGROUND INFORMATION
Background information provided by the MRC included a 351-page literature review of the current state of ME/CFS research and paper copies of the XMRV paper from Science.
The MEA provided copies of the latest edition (October 2009) of our guidelines – ME/CFS/PVFS – An Exploration of the Key Clinical Issues -on research, clinical assessment and management.
INFECTION AND XMRV:
There was a great deal of lively discussion relating to all aspects of XMRV infection – ie existing research findings; replication of the preliminary results from research groups both here and abroad; implications for blood donation; possible pathogenicity of the XMRV infection; future research priorities – during the formal sessions, over dinner, and well into the night on Thursday. We were fortunate in having four researchers present who are all involved with taking this research forward and are well aware of what is happening both here and abroad.
It was made clear to all the researchers present who are involved in retroviral work that the MEA Ramsay Research Fund has money available if this is required urgently to help fund any immediate or short term funding requirement. The MEA is also very willing to look at more major grant proposals relating to XMRV.A link to the latest MEA summary on XMRV can be found on the home page of the MEA website and we will be updating this information later in the week. The website also has details of our exchange of correspondence with Sir Liam Donaldson, Chief Medical Officer, on the subject of blood donation.
The All Party Parliamentary Group on ME has XMRV on the agenda when it meets at the House of Commons on Wednesday 2 December. The Rt Hon Mike O’Brien, Minister of State (Health Services) at the Department of Health, will be present to deal with the main item on the agenda: the APPG Inquiry into NHS Services for people with ME/CFS. This meeting is open to the public – more details re time and venue can be found on the MEA website. If you are intending to come to the meeting please check the MEA website the day before because the House of Commons venue can change at short notice. And do allow at least 30 minutes from arriving at the House of Commons to get through security and find directions the right room.
The Countess of Mar’s Forward ME Group also has research on the agenda when they meet on Tuesday 24 November at the House of Lords.
The MRC workshop also discussed other infections, in particular herpes virus infections, that have been implicated in ME/CFS.
AUTONOMIC DYSFUNCTION: PROFESSOR JULIA NEWTON
Professor Julia Newton and her team at the University of Newcastle, who are working on autonomic dysfunction in ME/CFS, have just had a new paper published in the European Journal of Clinical Investigation. The paper describes an interesting practical approach to the management of symptoms relating to orthostatic intolerance. Ref: Sutcliffe K et al. Home orthostatic training in chronic fatigue syndrome – a randomised placebo-controlled feasibility study. EJCI, November 12 2009. If we can obtain an abstract of this EJCI paper it will be placed on the MEA website news box. The MEA Ramsay Research Fund is currently funding another study at the University of Newcastle to examine muscle energy metabolism in ME/CFS patients. More information can be found in the research section of the MEA website.
MRC: NEXT STEP FORWARD
There are a number of ways in which the MRC can help with a research agenda, in addition to providing finance for good new research proposals. So the next step forward in relation to ME/CFS will be for the MRC Expert Group to meet early in 2010 to discuss the content of this research workshop, along with the conclusions and recommendations that were produced during further discussion on defining research strengths and priorities on the second day.
Personal note
On a personal note I would like to add that while I have been extremely critical of the MRC in the past I believe that Professor Stephen Holgate, who is leading this ME/CFS initiative, is genuinely determined to take forward the biomedical research that the patient population, along with many doctors and researchers, believes is so vital if we are going to find effective forms of management for ME/CFS.
Membership of MRC Expert Group on ME/CFS Research
Professor Stephen Holgate (Chairman)
Professor Jill Belch
Professor Philip Cowen
Dr Esther Crawley
Professor Malcolm Jackson
Dr Jonathan Kerr
Professor Ian Kimber
Professor Hugh Perry
Dr Derek Pheby
Professor Anthony Pinching
Dr Charles Shepherd
Sir Peter Spencer
Dr Rob Buckle (MRC)
Dr Joanna Latimer (MRC)
Dr Charles Shepherd
Hon Medical Adviser, ME Association
As I was in contact with MRC Corporate Information and Policy, today, I requested confirmation of the presenter on “Fatigue” at today’s meeting which had been listed on the Agenda as “tbc”.
I have been advised that it was not possible to secure a speaker for the proposed session on Fatigue, but that an Open Session was added towards the end of the day.
A final copy of the Agenda was provided for my information. I am advised that this will be published on the MRC website, early next week.
Note that this is the 3rd Agenda that has been issued (on 19 November) and it supercedes the two previous files posted on this site and elsewhere.
The next meeting of the All Party Parliamentary Group (APPG) on M.E. will be held 3.15-4.45pm, Wednesday 2 December 2009 in Committee Room 15, House of Commons.
1. Welcome by the Chairman
2. APPG Report on the Inquiry into NHS Services
3. Speaker: Mike O’Brien MP, Minister of State for Health Services
4. Minutes of the last meeting
5. Matters arising
– APPG legacy paper (in preparation for the General Election)
– New research: murine leukaemia virus-related virus (XMRV)
TO many people who suffer from the poorly understood illness called chronic fatigue syndrome, a recent study linking the disorder to a virus was a victory for the little guys.
For one thing, the study pointed to a physical cause for an illness that the medical establishment had often snidely dismissed as psychosomatic. The research could not be ignored: it was published last month in Science, one of the world’s pickiest and most prestigious journals…
Scientists have identified a virus lurking in 68 of 101 patients diagnosed with chronic fatigue syndrome. Whether the virus — known as XMRV — causes the syndrome is unclear. Molecular biologist John Coffin describes how the findings fit with what scientists know about XMRV.
Transcript also available
Scroll down NPR page for
Virus Linked To Chronic Fatigue Syndrome
by Jon Hamilton
Chronic Fatigue Syndrome — Could a “Stealth Virus” Be Lurking?
From Infectious Disease Alert | November 2009
Abstract & Commentary
By John F. Joseph, MD, FACP, FIDSA, FSHEA, Associate Chief of Staff for Education, Ralph H. Johnson Veterans Administration Medical Center; Professor of Medicine, Medical University of South Carolina, Charleston, is Associate Editor for Infectious Disease Alert.
Dr. John is a consultant for Cubist, Genzyme, and bioMerieux, and is on the speaker’s bureau for Cubist, GSK, Merck, Bayer, and Wyeth.
Source: Lombardi VC et al. Science. 8 October 2009 (10.1126/science.1179052).
J Virol. 2009 Nov 11. [Epub ahead of print]
Androgen Stimulates Transcription and Replication of XMRV (Xenotropic Murine Leukemia Virus-Related Virus).
Dong B, Silverman RH.
Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, Cleveland, OH 44195.
XMRV is a gammaretrovirus originally identified in a subset of prostate cancer patients. Because androgens stimulate prostate tumors and some retroviruses, we investigated effects of dihydrotestosterone (DHT) on XMRV transcription and replication. Transcription from the XMRV U3 region was stimulated up to 2-fold by DHT, but only in cells containing a functional androgen receptor. Mutations in the glucocorticoid response element (GRE) of XMRV impaired basal transcription and androgen responsiveness. Furthermore, DHT stimulated XMRV replication by 3-fold, whereas androgen inhibitors (casodex and flutamide) suppressed viral growth up to 3-fold. Findings suggest that integration of the XMRV LTR into host DNA could impart androgen stimulation on cellular genes.
PMID: 19906923 [PubMed – as supplied by publisher]
Investor Alert: Former Attorney General of Louisiana Charles C. Foti, Jr. and KSF notify Hemispherx Biopharma, Inc. investors of Lead Plaintiff Application Deadline in Securities Class Action Lawsuit
Yesterday, 12 November, I contacted Action for M.E.’s Policy Officer for an ETA for the Minutes and transcript of the last meeting of the APPG on ME (21 October). I also enquired when the Agenda for the 2nd December meeting was anticipated to be issued.
Tristana Rodriguez, Action for M.E.’s Policy Officer, has advised that the transcript typist for the last APPG meeting had said that a full transcript could be expected within four weeks or so. A transcript has yet to be provided and this would be chased up by Ms Rodriguez, next week, as the transcript typist was currently away.
I was advised that since the Minutes would be produced using the transcript for reference, no timeframe could be given for the publication of the Minutes until the transcript has been provided to the secretariat.
As far as the Agenda for the meeting on 2 December goes, secretariat were in the process of finalising details with the invited speaker. When this had been achieved, an Agenda would be circulated. When the Minutes and Agenda have been issued I will publish copies, here.
Before the October meeting, a group of members from the ME community met up for coffee. If you are interested in attending the December meeting and would like to meet up with a few others before the meeting starts drop me an email via the Contact Form with “December APPG meeting” at the top and I can put you in touch.
Forward-ME is a caucus group to the APPG on ME, convened and chaired by the Countess of Mar. Lady Mar decided which patient organisations would be extended an invitation to participate in her group and which would not. Unlike the APPG on ME, Forward-ME meets behind closed doors and members of the public are not able to attend, even as observers. Lady Mar convened this caucus group out of a desire to find “common ground” amongst the main patient organisations and the group appears to have superseded the now dormant ME Alliance.
No-one consulted with Lady Mar’s constituency of interest – the ME community – over whether a group which meets between meetings of the APPG, behind closed doors, would be welcomed and if so, what the extent of its remit should be, on what basis it would be decided to whom membership would be offered and how the wider ME community would inform its agenda. Forward-ME includes the organisation “ReMEmber” which promotes publications by Professor Michael Sharpe on its website; members also include representatives from Action for M.E., the MEA, AYME, the Young ME Sufferers Trust, Invest in ME, BRAME and ME Research UK.
The 25% ME Group had been members but has since withdrawn support for Forward-ME. Invest in ME has already published its concerns in a statement (below) and its continued membership of the group is tabled for discussion at the next meeting of Forward-ME.
Clarification regarding membership of the APPG on ME
There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.
None of the above are members of the APPG on ME.
In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.
But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.
So the only members of the APPG on ME are parliamentarians.
From the office of the Parliamentary Commissioner:
“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”
The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.
Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.
“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”
AfME and the MEA have alternated the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.
Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.
So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.
ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.
BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.
RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.
A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.
I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.
A Guide to the Rules on All Party Groups can be downloaded here:
Below is the text of the Agenda for the November MRC Workshop. I have posted links for this Agenda and other information provided by the MRC, yesterday, on the Facebook Walls of Action for M.E. and the ME Association. At the time of writing, neither organisation has published a copy of the Agenda, itself, on its main website.
Since flagging up the Agenda on Action for M.E.’s Facebook site, and some ensuing comments by users of the site, the following has been added by the moderators:
“Sir Peter has asked Professor Holgate to ensure during the course of the two-day event that particular consideration be given to the XMRV findings and current efforts to replicate them by other researchers.”
“Action for M.E. MRC CFS/ME research workshop Sir Peter Spencer, CEO, Action for M.E. and other M.E. charity representatives will attend a multi-disciplinary workshop for researchers, organised by the Medical Research Council (MRC), 19-20 November.”
“The meeting, chaired by Professor Stephen Holgate, MRC Professor of Immunopharmacology from Southampton University, aims to encourage new research into M.E./CFS, harnessing the latest technologies and scientific thinking to develop a proper understanding of the underlying disease mechanisms.
Papers circulated include information about XMRV, the retrovirus identified in 68 out of 101 CFS patients by researchers at the Whittemore Peterson Institute in Reno, USA. Although the sample is small, the results have led to calls for greater investigation into the biology of M.E.
Sir Peter has asked Professor Holgate to ensure during the course of the two-day event that particular consideration be given to these findings and current efforts to replicate them by other researchers.
Anyone who wishes to contact Sir Peter about the workshop may do so by e-mailing consultations@afme.org.uk
“Scientists participating in the MRC workshop are already due to hear short presentations on phenotyping and epidemiology, autonomic dysfunction, fatigue, sleep, pain, neuroimaging, new technologies, immune dysregulation, infection and virology.
There will be an opportunity for group discussion before delegates split up into workshops.
These will consider:
– capitalising on current issues and UK scientific strengths
– new technologies and technological platforms
– national resources eg. patient cohorts
– partnership models
– research prioritisation
– other issues.
Professor Holgate will then summarise the workshop’s discussions, which will indicate a way forward for future work.”
Text of Agenda for MRC CFS/ME Research Workshop 19-20 November 2009
Note: I am advised by Ms Parker, MRC Corporate Governance and Policy, that “We are still in discussion with colleagues regarding the participants list and will respond to this part of your request in due course.” I will post the list of participants when the MRC has fulfilled this part of the FOI request for information.
Also note that the timings, as set out in the document for the afternoon session of Day One, are squiffy. I have reproduced as supplied by the MRC in the PDF.
[*Ed: Philip Cowen is Professor of Psychopharmacology and MRC Clinical Scientist at the University of Oxford. His research and clinical interests are in the biochemistry and treatment of mood disorders, and particularly the pharmacological management of resistant depression.]
16:00 New Technologies Professor Chris Ponting
16:15 Immune dysregulation/Infection Professor Tony Pinching
09:00 Introduction – brief for morning session – Professor Stephen Holgate
09:15 Working group discussions
‘What would you like to see the field respond to?’
Areas for consideration:
. capitalising on current issues and UK scientific strengths
. new technologies and technological platforms
. national resources e.g. patient cohorts
. partnership models
. other issues
By Angela Townsend, The Plain Dealer
November 10, 2009, 6:00AM
Dr. Robert Silverman is a cancer biologist at the Cleveland Clinic instrumental in the discovery of the XMRV virus. Medical reporter Angela Townsend discusses this story at 7:35 this morning with WCPN FM/90.3’s Eric Wellman on Tuesday Check-up. Listen in or log in online. The virus XMRV has become a favorite topic in the scientific community — three years after its initial discovery in prostate cancer tumors by researchers from the Cleveland Clinic and the University of California, San Francisco…
[…]
Capitalizing on the excitement and heightened spirit of collaboration, 75 of the top scientists nationwide studying XMRV are flying in to convene Wednesday at the Clinic.
“This is the first meeting of the major players in the area of XMRV,” said John Coffin of the department of microbiology at Tufts University in Boston. “I think there’s going to be a lot of excitement and a lot of new information presented.”
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