Summaries: MEA Board of Trustees meetings 6th and 7th of September 2010 and AGM

Summaries of ME Association Board of Trustees meetings held on 6th and 7th of September 2010 and AGM (Annual General Meeting) held on 7th September

Shortlink: http://wp.me/p5foE-39l

New MEA website link for these Summaries:

http://www.meassociation.org.uk/?p=1659

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:

XMRV: 913
Benefits: 442
Medical Education: 274
MRC research: 100
NHS Services: 78
NICE guideline review: 74
Severely affected: 47
Children: 15
None: 7

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

This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

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

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MEA statements: Review of NICE guideline CG53 and PACE Trial results

MEA statements: Review of NICE guideline CG53 and PACE Trial results [and BACME (British Association of CFS/ME) 2010 Conference Programme]

Shortlink: http://wp.me/p5foE-35V

The British Association of CFS/ME (BACME) appears to have taken over some of the functions of the CFS/ME Clinical and Research Network and Collaborative (CCRNC). There is no website for BACME and very little information available about the role and operation of this organisation.

BACME is chaired by consultant paediatrician, Dr Esther Crawley (lead researcher, Lightning Process pilot study in children). Assistant Chair is Alison Wearden PhD, CPsychol (lead researcher, FINE Trial).

Related information from the News section of the ME Association website (which includes extracts from BACME’s Constitution for which I do not have access to a full copy):

Questions raised over training role of new body for ME/CFS professionals

‘Parliamentarians should examine role of new NHS training forum for ME/CFS’

1] ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)

2] ME Association statement: PACE Trial results in October (UK)

ME Association statement: NICE Guideline on ME/CFS – 2010 review process (UK)

1 September 2010

Having been led to believe that the proposed review of the 2007 NICE guideline on ME/CFS would be starting in August 2010 The ME Association wrote to NICE to seek clarification in the absence of any official announcement being made during August.

We received the following reply on 24 August:

Thank you for contacting the National Institute for Health and Clinical Excellence (NICE).

The review date which you refer to is the date at which we plan to begin the review process. We are currently beginning to gather evidence and opinions to inform our review proposal. If there has been a large amount of new evidence produced since the original guidance was produced, the review proposal may be to conduct a full review, which can take over a year. On the other hand, if there has not been very much new evidence produced, we may propose to delay the review.

The review proposal will be posted on our website for consultation in the months following the ‘review date’ listed in the guidance. To be notified of additions to web pages relating to your area of interest, including review proposals, you may like to sign up for our web alert system. You can do this via the following page of our website:

http://www.nice.org.uk/registration/index.jsp?action=registration

I am sorry that I do not have any more definitive information at this stage.

Regards

Carla Springl

Communications Administrator (Enquiry Handling)
National Institute for Health and Clinical Excellence

Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom

Web: http://nice.org.uk

We also know that members of the original guideline development group have been asked for their opinion as to whether there is sufficient new evidence to justify a review at this time.

The important phrase here is large amount of new evidence produced since the original guidance was produced.

In NICE-speak this means results from randomised controlled trials into any aspect of management that have been published in reputable peer-reviewed medical journals since August 2007. The NICE guideline is primarily concerned with the clinical assessment and management of ME/CFS and does not get involved in coming to conclusions about causation – although NICE obviously has to take note of developments relating to causation, including the findings relating to XMRV and MLVs.

Having managed to fight off a Judicial Review of the ME/CFS guideline, NICE will be feeling confident that its guidance is sound and acceptable to both patients and doctors – a position which many patient support organisations, including the MEA, obviously strongly disagree with. And with very little in the way of new evidence being published in relation to the treatment of ME/CFS, and the fact that results from the PACE trial are fast approaching, it seems likely that NICE may decide to defer this review until later in the year, or even 2011, when they have this information – which could well strengthen their controversial recommendations regarding cognitive behaviour therapy (CBT) and graded exercise therapy (GET).

It should also be noted that NICE will not want to re-open the debate about existing evidence (ie results from clinical trials that were published up to the time of the 2007 guideline) – they want to look at new evidence.

The ME Association will obviously be challenging the current recommendations regarding the use of CBT and GET and to support out case we will be making use of the patient evidence (approx 4,500 respondents) from our 2010 Management Report – the largest ever survey of patient opinion ever carried out in the UK, probably in the world. This report can be accessed on-line here:

http://www.meassociation.org.uk/index.php?option=com_content&view=article&id=1283&Itemid=223

We are also consulting with various experts, including those with statistical knowledge, about how best to present our case to the review.

For information purposes the following explanation of how recommendations contained in a NICE guideline should be interpreted by clinicians when making decisions about patient management is worth noting. It clearly contradicts the mistaken view of some doctors that NICE guidelines are almost mandatory and as a result they are no longer able to exercise their clinical judgement where this is may not be entirely consistent with a guideline position.

NICE clinical guidelines are recommendations about the treatment and care of people with specific diseases and conditions in the NHS in England and Wales. Clinical guidelines represent the view of NICE, and are arrived at after careful consideration of the evidence available. Healthcare professionals are expected to take it fully into account when exercising their clinical judgement. However, the guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, and informed by the summary of product characteristics of any drugs they are considering.

Implementation of this guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement the guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

With regards to technology appraisal guidance, this type of guidance contains recommendations on the use of new and existing medicines and treatments within the NHS. The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE’s technology appraisals, usually within 3 months of guidance being published.

ME Association
1 September 2010

http://www.meassociation.org.uk

ENDS

Ed: This BACME conference and AGM is being held in Milton Keynes on 13 and 14 October and is faciliated by AYME who have collaborated in CCRNC conferences.

Download PDFs for BACME Provisional Programme and Registration Form here:

BACME 2010 Conference Programme

BACME CFS ME CCRNC conference 2010 Registration Form

 

2] ME Association statement: PACE Trial results in October (UK)

3 September 2010

It is being reported today in Link magazine (issue 39, September 2010) that:

Data collected for the one year follow up of the PACE trial is currently being analysed in preparation for publication of the findings.

Professor Peter White of St Bartholomew’s Hospital, London will report on the most up-to-date progress and baseline data from the PACE trial to delegates at the British Association of CFS/ME (BACME) October conference.

The release of this PACE trial information may well have an effect on a decision by NICE as to when they commence a review of the 2007 Guideline on ME/CFS.

A statement and more information on the NICE Guideline review can be found in the September news section on the MEA website.

Information supplied by ME Association: http://www.meassociation.org.uk

ENDS

BACME CFS ME CCRNC conference 2010 Registration Form

BACME 2010 Conference Programme

Provisional Programme

British Association of CFS/ME (BACME)
2010 Conference

Draft Program – please note there may be changes before final program

Milton Keynes 13-14 October
Wednesday 13 October

9.30 -10.30  Registration and coffee

10.30-11.00  Opening Address:

Prof Stephen Holgate  MRC (Medical Research Council)  Clinical Professor of Immunopharmacology. 

“The time has at last arrived to strengthen research into CFS and ME”

11.00 – 12.00  Keynote Speaker: Professor Daniel J. Clauw MD Division of Rheumatology University Michigan

“Advances in Our Understanding of CFS and Overlapping Conditions”

12.00 – 1.30  Lunch Hot and Cold Buffett (preference to be booked)

1.30 -2.15  Dr Alison Wearden Reader in Psychology: FINE Trial

“Pragmatic rehabilitation for Chronic Fatigue Syndrome/ME”

2.15 – 3.00  Judith Harding:
The Role of Diet Management in CFS/ME

3.00 – 3.30  Comfort Break

3.30 – 5.00  Uni – professional Networking Groups.
To be facilitated please contact maryjane@ayme.org.uk asp if you would like to request a specific group e.g physiotherapists, nurses, paediatricians

5.00 – 6.00  BACME AGM Chairperson: Gill Walsh
(for existing and new members)

7.30  Conference Dinner (to be pre-booked separately)

Thursday 14 October

9.00 Registration & Coffee

9.30 – 10.45  Workshop 1

10.45 – 11.15  Coffee & Comfort Break

11.15 – 12.30  Workshop 2

12.30 – 1.45
Lunch Hot and Cold Buffett (preference to be booked)

1.45 – 2.15  Poster Presentations – Organiser Gabrielle Murphy
Posters will be on display for the whole 2 days

2.15 – 2.45  Coffee & Comfort Break

2.45 – 3.30  Diane Cox & Heather Garry
Video Conferencing for delivery of CFS/ME Interventions at Home (Tele-rehabilitation)

3.30 – 4.30  Professor Peter White
St Bartholomew’s Hospital London

“PACE trial: so near yet so far”

(If outcome results are not yet published, Peter White will present the design, progress and baseline data from the trial)

4.30 – 5pm  Closing Address – To be announced

WORKSHOPS

1. Working with the Severely Affected – Leeds Service

2. Mindfullness and ME –The Mindfull Approach to Chronic Illnesses Steve Johnson, Director of the Breathworks Foundation

3. Review of Literature and Clinical Implications on Sleep (please note this is not a workshop) Gabrielle Murphy & Alex Westcombe

4. To Be Announced

5. Research workshop – How to do research successfully when you are a busy clinician – Professor Peter White

6. Group work – Michelle Selby and Helen Chub

 

Additional information on selected presenters:

Breathworks
http://breathworks-mindfulness.org.uk/the-breathworks-foundation.html

Gabrielle Murphy
Physician working in the Fatigue Service at the Royal Free Hospital and Clinical Lead. She also works in the Department of HIV medicine. Her interests include medically unexplained symptoms MUS). Also involved in local and national organisations promoting access to CFS/ME services and ongoing research.

Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME
http://www.karnacbooks.com/Author.asp?AID=13770

Alex Westcombe
North Bristol NHS Clinical Psychologist
http://www.nbt.nhs.uk/services/criticalcare/painmanagement/who_is_who.htm

Michelle Selby
OT lead Dorset CFS Service (formerly “The Wareham Clinic”); Clinical Co-ordinator, Southampton CFS/ME Clinic
http://www.meactionuk.org.uk/RiME_CFSME_Centres_Condemned.html

Dr Helen Chubb
Senior Registrar, Whitchurch Hospital
Chronic Fatigue Syndrome – personality and attributional style of patients in comparison to healthy controls and depressed individuals: Helen. L. Chubb; Irene Jones; Janice Hillier; Christopher Moyle; Stephanie Sadler; Tanya Cole; Kate Redman; Anne Farmer
DOI: 10.1080/09638239917274 Journal of Mental Health, Volume 8, Issue 4 August 1999 , pages 351 – 359
http://www.informaworld.com/index/T32L42TTQ9N74DN3.pdf

Invest in ME Decline BACME Invitation

Invest in ME Decline BACME Invitation

Shortlink: http://wp.me/p5foE-2Z2

Invest in ME has issued a statement around its decision to decline an invitation to become a member of BACME (British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).

For Invest in ME’s position statement on the proposed Bath/Bristol pilot study to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process and specialist medical care in CFS/ME in children as young as eight, go here Invest in ME March 2010 Newsletter.

 

Invest in ME Decline BACME Invitation

Invest in ME recently received an invitation from the British Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (BACME) inviting us to apply to become an executive member of that organisation.

BACME is chaired by consultant paediatrician Dr Esther Crawley – who was recently awarded a grant to do a clinical trial on the Lightning process (funded with £164,000 from the Linbury Trust and the Ashden Trust) – a business which assumes that no matter what is causing an ME patient’s illness it will help cure a patient from them.

With cases of people with ME being made worse from this business the recent Norwegian film by Paal Winsents (“Make Me Well”) illustrates the danger of people with no medical training attempting to treat a neurological illness such as ME. A telling quote from a LP practitioner in that film says it all –

“…. It does not matter how it started. Sometimes people had a bacterial infection, sometimes people had a viral infection. It does not matter how it started. The Lightning Process works equally well”.

Such uninformed, non-clinical and dangerous statements being used by people promoting businesses without any medical training, at a time when the need for more funding for biomedical research into ME and the evidence to support that funding requirement is overwhelming, is symptomatic of the problems on a non-strategic, non-biomedical approach to diagnosing and treating people with ME. Meanwhile ME patients and their families have to witness this absurd waste of money.

Dr. Crawley’s views on ME aren’t those of Invest in ME’s and we have serious concerns about her position as chair of an organisation such as this.

The Assistant Chair of BACME is Alison Wearden, who is Reader in Psychology at the University of Manchester, Chair Elect of British Psychological Society’s Division of Health Psychology and Associate Editor of British Journal of Health Psychology and whose studies include “Illness cognitions and diabetes – how the beliefs which patients hold about their diabetes impact on their attempts to manage it, their adjustment and well-being”. Wearden was head of the FINE trials (click here) – a waste of taxpayers’ money which resulted in nothing of value for people with ME.

BACME has a constitution to which members have to sign up. In this constitution, which BACME requires its members to support, it includes the following-

2.2 Objectives

2.2.1 To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines

2.2.4 To support the delivery of services and to enable services to maintain standards of care in the treatment of CFS/ME as set out in the NICE guidelines

4. The Executive

4.1.4 The BACME Executive will invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members

Invest in ME rejected the NICE Guidelines and therefore cannot agree to endorse a constitution which lists among other things the above objectives.

Invest in ME endorse the critique set out by Twisk FNM, Maes M. in their review of CBT/GET in which they state

“So, it can be concluded that the efficacy claim for CBT/GET is false. But what is more important, is the fact that numerous studies support the thesis that exertion, and thus GET, can physically harm the majority of the ME/CFS patients.

This assertion is confirmed by the outcomes of two large patient surveys in the UK and Norway, and two smaller surveys in Scotland and the Netherlands.”

(A review on Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) in Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS): CBT/GET is not only ineffective and not evidence based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.) click here

The NICE guidelines need complete revision* as their current version is far from evidence-based.

The NICE guidelines have been shown to be ineffectual, biased, unusable, with ME patients eventually taking NICE to a judicial review.

For an organisation to support NICE, and require members to abide by them, let alone “champion” them illustrates a flawed and damaging basis for any claim to represent people with ME and their families. Such an organisation is likely to continue to force a continuing approach of going round in circles, obfuscating the true requirements for ME patients and achieving little of real value for people with ME and their families.

With BACME maintaining its present structure, current chairman and constitution then Invest in ME will decline any offer to apply for membership of this organisation.

It would be unethical of Invest in ME to sign up to such a constitution and Invest in ME’s aim remains to find ways other than those set out in the NICE guidelines to treat patients diagnosed with ME according to the Canadian Clinical Consensus guidelines.

Further Reading: (links provided by Invest in ME)

Magical Medicine: How to Make a Disease Disappear – click here

Lightning Process – The Falsehood of Magical Medicine – IiME Newsletter March 2010 – click here

Can the MRC PACE Trial be justified? – click here

Wessely’s Way: Rhetoric or reason? – click here

Invest in ME – Communications with the UK Chief Medical Officer – click here

A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics

A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics – two views

Shortlink: http://wp.me/p5foE-2XM

“The first thing was to take responsibility for our illness. I had to stop saying I had M.E. Instead I have to say I am ‘doing M.E’, I wasn’t tired, I was ‘doing tired and doing muscle aches’. The implication being if I am doing it I can stop doing it.” [9]

20 July 2010

Published with kind permission of Karl Krysko.

A version of this commentary was published earlier today, on the Co-Cure Listserv mailing list.

Juvenile Treatment -Testing and LP-CBT/GET ethics

Recent attention has been drawn to the question of ethics in attempting a Lightning Process (LP) pilot study on children and juveniles suffering from ME. It is right to question such. The very nature and history of this pseudo-treatment approach should dictate against even entertaining the thought, yet alone dabbling in its dangerous claims.

It is obvious that some individuals in the LP, if they are lucky, do not actually have ME in the first place, while others who do, in fact, and show some ‘improvement’ are simply drawing on margins of redundancy for extra energy expenditure that patients automatically and unconsciously build into their cautious use of activity generally. The un-lucky ones, however, encouraged and lured with promises of ‘cure’ in the LP trespass these self-protection margins, and face precipitating a serious relapse.

The basic therapeutic ‘rationale’ for the LP has been around for many years during which time its foundations, essentially Neuro Linguistic Programming (NLP) and Affirmation therapy, have had plenty of time (and patient financing) to establish their scientific and medical validity. This they have failed to do long term.

Practitioners such as Leonard Orr, of ‘re-birthing’ fame, and others in the early 1980s motivated their newly diagnosed and pathetically desperate HIV patients, for example, to go jogging along the beaches of California (where else!) while affirming repeatedly to TV cameras, and all, that they were no longer ill, did not have a life threatening medical condition, and were in fact in perfect health. This claim they were directed to assert most emphatically, and especially so – no matter how unwell they felt or became, as if the ‘magic’ of insisting this to be the case could somehow make it so.

Then as now, patients were charged most handsomely for this treatment approach. Many such individuals back then, before the era of medical understanding and proper treatments for the AIDS virus, went to their early death still chanting and ‘affirming’ their pathetic mantras, in total denial. The modern versions of this nonsense, and it has various forms even among some charismatic ‘healing’ religions, just goes to show how difficult it is to kill off a good money making racket.

But the current discussion has missed one similar and important parallel to the question of ethics in treating and testing child victims of ME with the LP. The proposal has recently been made in Wales that the NHS should be petitioned for an essentially CBT and GET-GAT treatment service for ME youngsters, alongside the already existing services for adults here in the Principality.

But notice how the facts and ethics of the LP and CBT/GET link unmistakably:

Just as CBT thinking really began to replace the old ‘taking and insight therapy’ and catharsis types of approach to behavioural-psychological based problems, at the same time Affirmations and NLP appeared on the scene.

As with the LP, and after all this time since, the scientific and medical validity of CBT and de-conditioning therapy for ME is also lacking, despite early robust efforts, here for example, by the Welsh ME/CFS Service (with several others conducted in the UK at the time) over five years between 1999 and 2004 to establish its value, using the best methodological, statistical and University (Bangor) facilities available. After some attempted spin-up, those poor results were later sat on.

Like the LP also, the CBT approach obviates the patients’ instincts and intuitions concerning their health situation, as well as the views of their carers, friends and family. The patient in both paradigms has to denounce what they know they know, experience, and have learned about their illness and coping in order to, supposedly, get better. And both regimes thereby effectively downgrade or refute the genuine seriousness, gravity and clinical authenticity of ME.

Like the LP, CBT/GAT also make promises that cannot be substantiated or upheld, clearly so for our badly compromised patients; one nine year GP-diagnosed, for example, severely effected and bedridden ME patient near Flintshire north Wales, was told by her ME Clinic that she would be well and functioning within the year, if she maintained the methods propagated at their eight day training course. Meantime, similar attempts were made to overturn her longstanding ME diagnosis with her GP. Lightning Process patients are made equivalent promises, and are similarly encouraged to anathematise their ‘ME title and patient ‘role’.

Most seriously and least obviously, both the LP and CBT/GAT approaches irresponsibly reject, ignore, are indifferent to, or deny the existence of (already) serious ongoing molecular and organic damage that will be exacerbated over time by inappropriate, incremented, upward gradations of kinetic load, in the name and claim of ‘improvement.’ The compounding of this molecular damage could have mortal consequences for many ME patients, at least over the long-term and wherein, temporally, this therapy is exactly designed to operate.

In their most recent and comprehensive Review of the Research to date, for example, Twisk and Maes (2009 – 10) refer in this regard to forms of bio-chemical long-term damage that CBT and methods like Graded Activity/Exercise for ME patients could produce, stating that the therapy ‘is not only ineffective and not evidence based, but also potentially harmful for many patients with ME.’

The question of ethics, of placing ME children in the direct oncoming hit-path of a Lightning Process treatment and assessment – in a ‘test to destruction’ fashion – potentially a consequence in the short or long term – is therefore as unethical as doing so in its other latest crack-pot analogue recently announced here in the Principality as ‘a new campaign’; for yet another, this time specifically child and juvenile, CBT/GAT Service for Wales.

Rejecting the Lightning Process and its flawed manifestations down the decades, it is for the same parallel reasons here given between the two treatments, that we also reject and will actively campaign against such an irresponsible, scientifically indefensible and, yes, unethical NHS development for our young ME victims living here in North Wales.

Karl Krysko  BA (hons), BSc.

 

Although Ms Jacqui Footman signs herself, in this Co-Cure opinion piece, as a “Mother and Information Officer, South Molton ME Support Group”, Ms Footman fails to disclose a conflict of interest.

Ms Footman is a provider of EFT and similar therapies and advertises her business in the magazines of national patient organisations.

Advert from an ME Association magazine – ME Essential

“Jacqui’s EFT practice combines aspects of counselling, life-coaching, NLP and psychotherapies such as CBT and solution-focussed therapy with the powerful new energy-psychology technique EFT, which involves tapping acupuncture points to bring about dramatic personal change and healing. EFT is available by phone.

“Jacqui Footman BA (Hon), PGCE, Member National Council of Psychotherapists, Practitioner of Emotional Freedom Techniques (EFT), NLP, EMDR, WHEE, EmoTrance and Reiki. Registered (General Regulatory Council for Complimentary Therapies). Trained by Dr Myhill to support her ME/CFS treatment programme. Info Officer, South Molton ME Support Group with extensive experience of ME/CFS at many levels.”

Published on the Co-Cure Listserv mailing list  |  20 July 2010

From Jacqui Footman

[CO-CURE] NOT, MED, ACT: A question of ethics

Speaking of ethics, my question – is it ethical to attempt to deny 90 children/young people the opportunity to have their young lives back? or to try to persuade others to rescind that opportunity?

My 12-year-old was diagnosed with ME 3 months after glandular fever. The diagnosis was confirmed by our two UK best-known paediatricians in the field, Drs Speight and Crawley. She definitely had ME/CFS. She went from active swimmer and gymnast to wheelchair. She missed a year of school. Out of desperation with an NHS strict activity management approach which was driving her to distraction and starting to cause her to feel miserable she reached out to Lightning Process(LP) … and was back to enjoying an active life within weeks.

The LP Practitioner she saw has worked with many teenagers and has 100% success rate with teenagers so far.

Because of the obvious change when my daughter did LP, notably that she immediately went from so often looking deathly pale to having a constant healthy rosy complexion, someone in our local ME support group who had been bedbound for 10 years since being made dreadfully worse with CBT/GET decided there must be something to LP and it must have some sort of capacity to directly affect the physiology. She mustered the courage to try LP herself and the same practitioner went to her house to do it with her as she wasn’t well enough to get to a LP course. She was walking round her garden by the third day of the LP course and has gone from strength to strength since. That was over a year ago. She has just won a design competition and is to start the high profile design course in Oxford for which she won the fees in September this year. She has a life again after 17 years of existence in a bed. She had ME/CFS too, no question.

LP is nothing like the NHS CBT/GET/GAT treatments. I’ve detailed knowledge of both. LP bears no relationship to the deconditioning theories etc upon which CBT treatments have been based.

When LP first came out I was sceptical. After this personal experience and observation I don’t hesitate to recommend this LP Practitioner who once had ME/CFS herself and has a brilliant understanding of what people need to get well and gives all the support and follow-up needed. Although I don’t recommend LP per se without qualification. I do believe there should be further research. LP seems to work best with young people.

Jacqui Footman
Mother and
Information Officer, South Molton ME Support Group
info@mecfssupportdevon.org.uk
(please note, long and negative anti-LP emails will not be answered, so save your energy)

Related material:

Press Release issued 2 March 2010: Research study to investigate a chronic childhood condition
 

For background to this issue see ME agenda 5 July report:

Advertising Standards Authority (ASA) Adjudication: Withinspiration (Lightning Process)

Poll: Do you think it is ethical to undertake a pilot study looking at the feasibility of recruiting children aged 8 to 18 with CFS and ME into a randomised controlled trial (RCT) comparing Lightning Process and specialist medical care when no rigorous RCTs into the application of LP in adults have been undertaken? 

Register your opinion here: http://tinyurl.com/LightningProcessPilotStudyPoll 

References:    

[1] Press Release, University of Bristol, 2 March 2010:
http://www.bristol.ac.uk/news/2010/6866.html   
Media article: Chronic fatigue syndrome study Mineral Water Hospital 

[2] ME Association position statement on Lightning Process, February 2007  

[3] Action for M.E. article on Lightning Process, InterAction magazine, March 2007:
http://www.afme.org.uk/res/img/resources/IA%2059%20lightning%20process.pdf    

[4] Patient Survey 2008, Action for M.E. and AYME:
http://www.afme.org.uk/res/img/resources/Survey%20Summary%20Report%202008.pdf    

Patient Survey May 2010, ME Association:
http://www.meassociation.org.uk/images/stories/2010_survey_report_lo-res.pdf   

[5] Minutes, Forward-ME meeting, House of Lords, 8 July 2009:
http://www.forward-me.org.uk/8th%20July%202009.htm    

[6] MRC Guidelines Medical Research Involving Children (Nov 2004, revised Aug 2007):
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC002430    

[7] Request for information under FOI and FOI Office responses: 
FOI – Lightning Study Chapman 17.06.10  

[8] Lightning Process website
http://www.lightningprocess.com/ 

[9] LP Doesn’t Work for ME: Personal accounts from LP “trainees”:
http://www.sayer.abel.co.uk/LP.html 

Letter: Lightning process for ME didn’t work for me:
http://www.thisisnorthdevon.co.uk/news/Lightning-process-didn-t-work/article-613394-detail/article.html    

Personal account of Lightning Process technique as applied to patient with ME: 
http://www.forums.aboutmecfs.org/showthread.php?4687-Article-An-MD-on-the-Lightning-Process&p=77679&viewfull=1#post77679 

Personal account of Lightning Process as applied to patients with ME and MS:
http://forums.randi.org/showpost.php?p=4293368&postcount=1   

[10] Sample Lightning Process application form:
http://www.changeworksforyou.com/applicationform.htm 

[11] ASA adjudication against “Withinspiration”, June 2010:
http://www.asa.org.uk/Complaints-and-ASA-action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx   

[12] Withinspiration “NHS and Lightning Process research collaboration”:
http://www.withinspiration.co.uk/lightning_process_NHS_research.php    

[13] Radio 4 Case Notes: Dr Crawley on CFS clinic approach, November 2007 
http://www.bbc.co.uk/radio4/science/casenotes_tr_20071106.shtml 

[14] RNHRD Bath Chronic Fatigue Syndrome/ME Service for Children & Young People
http://www.rnhrd.nhs.uk/departments/chronic_fatigue_syndrome_children.htm

MRC CFS/ME Research Workshop: Note in text format

MRC CFS/ME Research Workshop: Note in text format

Shortlink: http://wp.me/p5foE-2T2

 MRC CFS/ME Research Workshop

19th and 20th November 2009

Heythrop Park Hotel, Oxfordshire

 _________________________________________________________________

1. Day 1 – Welcome & introduction

1.1 Professor Holgate welcomed the participants to the workshop and introduced the format for the two days.

1.2 An overview was provided of the MRC CFS/ME Expert Group and its Terms of Reference. The aims of the workshop were then detailed as follows:

• Identifying the underlying causes and mechanisms of CFS/ME:

o Clinical phenotypes

o Novel technologies and methodologies to help identify sub-phenotypes

o Molecular and cellular mechanisms of pathogenesis

• Consensus of priority areas.

• Encouraging new researchers into the field.

Areas proposed for consideration during the workshop included:

o capitalising on current issues and UK scientific strengths including national resources e.g. patient cohorts

o new technologies and technological platforms

o partnership models

o other issues

1.3 Professor Holgate referred to the recent interest in the publication of research linking the retrovirus XMRV to CFS/ME, before going on to summarise the key challenges in the field:

• A large clinical need without sufficient underpinning research.

• Low research capacity; need to encourage a multi-disciplinary approach.

• Grant applications that did not meet current competitive standards for funding.

• Absence of a clear pathogenetic mechanism(s) meant it was difficult to develop therapies “targeted” towards specific biological pathways. As a result current therapies tended to be directed towards symptom support rather than prevention or modifying/halting progress of the condition.

• The need to consider both physiological and psychological mechanisms in developing therapeutic approaches.

Page 2

• The difficulties inherent in defining phenotype and sub-phenotypes for a complex condition without good knowledge on underlying mechanisms.

• Knowing how best to incorporate new science and technological platforms.

1.4 Professor Holgate advocated a more collaborative approach to move the field forward.

A recent example of where such an approach had proved successful in increasing research capacity and impact was in respiratory research.

2. Presentations

(Full slide sets for each presentation are available at Annex 1)

2.1 Dr Esther Crawley provided an overview on the epidemiology of CFS/ME and the current research on phenotyping. The role of the British Association of CFS/ME (BACME) and the current specialist services available for patients were explained. The key points raised were as follows:

• Definitions of CFS/ME were important when investigating prevalence of the disease.

• In adults there were at least 3-6 different phenotypes identified to date and there were currently 3 paediatric phenotypes, suggesting the possibility of a stratified or targeted approach to treatment.

• CFS/ME was considered to be a heritable condition, and several latent factors and risk factors had been identified. Further gene/environment interaction studies were needed to understand the mechanisms at play in disease progression.

• BACME – in 2009 the 13 clinical service centres funded by Department of Health in 2004 were merged with the CFS/ME network. It was estimated that there would be 7,000-8,000 new patients/year assessed by the clinical teams.

• There were currently 30 teams contributing to the CFS/ME National Outcomes Database. Assessment data for more than 3,500 patients (adults and children) since summer 2009 had been collated. It was anticipated that this number would increase to 5,000 patients per year.

2.2 Professor Julia Newton presented an overview of the current research into the role of autonomic dysfunction in CFS/ME and briefly explained the research from her laboratory. She discussed the possible upstream and downstream mechanisms of autonomic dysfunction, such as those relating to control of blood pressure and heart rate, as well as treatment options. The key points raised were as follows:

• With regard to autonomic dysfunction in CFS/ME, there were currently problems regarding diagnosis of both CFS/ME itself as well as with the diagnosis of autonomic dysfunction. Further issues remained concerning the reproducibility, insensitivity of detection equipment and data interpretation.

• New assessment tools with increased sensitivity were progressively being made available.

Page 3

• Studies have shown that 50% of CFS/ME patients have neural-mediated hypotension.

• There were overlaps between hypotension in CFS/ME and other diseases e.g. cirrhosis and rheumatoid arthritis.

• A new treatment for patients with hypotension involving repeated daily tilt training was described. 2.3 Professor Jim Horne gave an overview of research into sleep disorders and the role of sleep dysfunction in CFS/ME. The key points raised were as follows:

• Some sleep disorders (eg apnoea/hypopnoea, restless leg syndrome, nocturnal myoclonus) can be manifested as CFS/ME, and it was important to screen for these.

• CFS/ME can produce sleep problems that can rebound back onto CFS/ME. For example, a disruption of the body clock (circadian rhythm), leading to sleeping excessively at the wrong time of day, to cause ‘post-sleep inertia’ (rather like ‘jet-lag’) with symptoms similar to/further aggravating CFS/ME.

• Stabilisation of the circadian rhythm can be helped by: 1) remaining under daylight/ fairly bright indoor light throughout daytime hours, and 2) using melatonin about 2h before bed-time (and avoiding bright light at night).

• Nevertheless, some patients with fairly normal circadian rhythms do take too many naps in the day, thus reducing sleep need at night and causing disrupted, unrefreshing night-time sleep. 2.4 Professor Maria Fitzgerald provided a comprehensive overview of the complex mechanisms and processes involved in pain. The role of pain in CFS/ME was also discussed. She highlighted the importance of pinpointing when pain became chronic. The key points raised were as follows:

• The purpose of pain was primarily defensive and a warning mechanism. However this mechanism could become maladaptive.

• Pain processing occurred at multiple sites. Furthermore, pain mechanisms were complex, combining sensory, motor, autonomic and affective components which could also lead to altered brain function resulting in, for example, anxiety and insomnia. These changes were dependent on individual differences, age, gender and culture.

• It was unclear whether pain in CFS/ME comprised either of peripheral components, altered central nervous system (CNS) processing and altered endogenous factors or a combination of these. In other conditions such as fibromyalgia, both altered CNS processing and altered endogenous factors were a feature of pain. There was also evidence of altered cortical pain processing in the brain.

• Potential causes of pain in CFS/ME may include an increased limbic system involvement, decreased endogenous descending control, enhanced temporal summation, nociceptor sensitisation, genetic determinants and early life experience.

Page 4

• Improved animal models of pain in CFS/ME were needed as a basis for research into underlying mechanisms, as were improved ways of defining and quantifying fatigue.

2.5 Professor Gijs Bleijenberg presented an overview of current research in clinical psychology in CFS/ME and outlined possible future directions in this area. The key points raised were as follows:

• The aetiology of CFS/ME could be divided into multi-factorial predisposing, precipitating and maintaining factors.

• Predisposing factors included neuroendocrine dysfunction; gender; psychiatric illness; high physical activity in adulthood; low physical activity in childhood.

• Precipitating factors included infectious triggers; fatigue; pain; physical inactivity.

• Less was known about perpetuating factors and the key question was how and when did certain factors become perpetuating.

• Current treatments were aimed at symptom management and included cognitive behavioural therapy and graded exercise therapy.

• Neurobiological changes were reported in CFS/ME e.g. changes in patterns of cerebral activity and decreased grey matter volume. However, it was not yet known whether these changes were as a result of the condition or whether they were central to the disease process.

• Possible future directions for research: o Large population based studies to increase insight in the development of CFS/ME.

o Smaller cohort studies of groups at high risk for developing CFS/ME with an emphasis on the development of the maintaining factors.

o Research and mediation analyses of treatment studies; experimental studies to discover mechanisms.

o Studies investigating neurobiological or physiological markers of CFS/ME in relation to treatment effect.

o Early detection of CFS/ME by physicians and promoting healthcare seeking by patients.

2.6 Professor Phil Cowen provided a summary of imaging techniques and studies in CFS/ME and other disorders. The key points raised were as follows:

• Technologies such as PET/SPECT, ligand PET, MRI, MR Spectroscopy and fMRI could be useful tools in helping to understand CFS/ME pathophysiology.

• In some respects, imaging studies of CFS/ME patients have shown similar findings to those using subjects with depression. For example:

o Structural morphometry studies have shown reduced grey matter volume.

Page 5

o Decreased binding of brain 5-HT1A receptors using PET. o Increased neural activation during tasks of working memory. Specifically in CFS/ME patients proton MRS detected an increase in ventricular lactate, which had been postulated as a potential biomarker for CFS/ME, perhaps representing evidence of mitochondrial dysfunction.

• Currently there was an overall lack of understanding of neural correlates of central fatigue in relation to functional brain imaging.

• The current evidence base in the field was unreliable due to the small patient numbers involved and the lack of consistency in experimental design. Increased sample sizes were needed coupled to more robust methodological approaches.

2.7 Professor Chris Ponting discussed new technologies in relation to genetic studies and their potential for use in CFS/ME research. The key points raised were as follows:

• Susceptibility: were viral or other environmental triggers impacting on a vulnerable host? Further study of gene/environmental interactions was needed.

• For successful genome wide association studies (GWAS) large sample numbers from well phenotyped patients were needed.

• It was possible to identify gene variants for low-moderate effects, which may be an issue for CFS/ME. For example a GWAS on height found that 40 genes account for only 5% of heritability.

• It was important to discover biological pathways implicated by genetic studies, as opposed to single abnormalities as these might prove to be more informative.

• Most complex disease associations appear in non-coding regions of the human genome whose mechanisms mostly remain enigmatic.

• There were currently limitations in analysis, storage and interpretation of the large data sets that will be generated in genomics and genetics in the next 5 years.

2.8 Professor Anthony Pinching gave an overview of the possible role of immunity and infection triggers in CFS/ME. The key points raised were as follows:

• Whilst chronic infection has been investigated for many years as a possible pathogenetic mechanism, the balance of evidence now tends to favour persistent immune activation or dysregulation, triggered by infection or other events that have similar impact.

• Patient histories indicate the common triggering role of a wide range of infections, and also provide clues to altered immune function in association with ongoing disease.

• Altered immune factors, e.g. decreased natural killer cell function, Th1-Th2 cell imbalance, elevation of both pro and anti-inflammatory cytokines have been associated in CFS/ME, and may be further elevated two days after exercise or activity.

Page 6

• The relationships between predisposing and perpetuating factors in these changes have yet to be established, but prior genetic and environmental factors are both likely to influence immune responses to infections.

• The recent XMRV retrovirus study had produced interesting results. However the involvement of XMRV remained unproven and the study would need to be replicated using fresh biological samples, different methodologies, other cohorts and disease controls. It would be premature to use tests for this agent in diagnosis, or to initiate treatment studies, until such replication had been achieved.

2.9 Professor Paul Moss discussed the possible role of virology in CFS/ME and presented a review of the current research in this area. The key points raised were as follows:

• Many studies have shown that infection is a strong candidate for triggering CFS/ME.

• Chronic infection was often linked to mood changes.

• CFS/ME had been associated with multiple viruses e.g. herpes viruses (CMV, EBV, HHV-6, HHV-7) as well as parvoviruses, enteroviruses and retroviruses such as XMRV.

• An imbalance between memory and naïve circulating and lymph node T cells has been shown in some studies.

• Small studies had been undertaken to investigate possible novel therapeutic interventions using antiviral approaches, e.g. acyclovir, monoclonal antibodies.

• A model was proposed by which a chronic response to infection might lead to fatigue and lack of exercise which could potentially escalate to a self-reinforcing cycle.

2.9 During the open session, the recent findings implicating a role for the XMRV retrovirus in CFS/ME were discussed. Attendees agreed that it would be important that the XMRV findings were replicated before treatment options could be considered, as well as extending the study to other CFS/ME patient groups in other countries. A consensus should be reached regarding the methodologies to be utilised between different research laboratories while research should be undertaken in well characterised cohorts. Studies in patients that have been recently diagnosed with CFS/ME should also be considered in order to minimise the number of patients with co-morbidities which could produce confounding results.

2.10 During the group discussion Sir Peter Spencer and Dr Charles Shepherd outlined a feasibility study for setting up CFS/ME post mortem and in vivo tissue banks which was being funded jointly by Action for ME and the ME Association. Sir Peter emphasised that the charities in this area were very small compared to other disease-related charities and therefore obtaining funding for large studies was challenging.

2.11 Attendees highlighted that there were potentially many opportunities that could open up research into CFS/ME. For example, little was known about fatigue mechanisms and investigating fatigue in healthy individuals could provide useful clues in understanding the aetiology of CFS/ME.

Page 7

Since anxiety and depression comprised a large part of the symptoms of CFS/ME alongside other symptoms such as pain, the interaction between biological and psychological mechanisms should be explored, particularly as there was scope to investigate anxiety from the perspective of autonomic nervous dysfunction. Another cross-cutting area that could prove fruitful to explore was that of mitochondrial function and energy metabolism.

2.12 In summing up the day’s discussions, Professor Holgate noted the many potential interesting avenues for research. Going forward, the right infrastructure needed to be in place, aided by the adoption of a collaborative approach.

3. Day 2 – Working group discussions

3.1 Participants were divided into three mixed groups for discussions at the beginning of the second day, before reporting back in a plenary session. Each group was asked to identify the research priorities and raise any other issues that they felt had not been addressed thus far during the workshop, as well as the following areas:

o group 1 – current UK strengths and resources

o group 2 – partnership models

o group 3 – new technologies and technological platforms

3.2 The reports from each group highlighted the following points:

Group 1 – Research priorities and UK strengths

UK Strengths

• Existing research cohorts of CFS/ME patients – there were several well characterised cohorts already established including trial cohorts such as PACE.

• Birth cohorts (e.g. “1958” and ALSPAC cohorts which had genetic information) for hypothesis generation. Whilst these were less well characterised it would still be possible to generate results in research studies.

• CFS/ME National Outcomes Database.

• Strong research teams particularly in epidemiology, imaging, gene sequencing, health psychology and non-pharmacological intervention. This was further enhanced by a general willingness to work in multi-disciplinary teams.

Research priorities

• To establish a large cohort with broad case definition identified early in primary care before CFS/ME became established e.g. first presentation following viral illness with fatigue and interference with normal activities. This could be followed up with more intensive phenotyping and obtaining biological samples (including samples for sequencing, metabonomics etc) to identify variables/predictors associated with developing confirmed CFS/ME.

Page 8

In addition to identifying priority groups for intervention studies this would also allow the exploration of the implications of different definitions/cut off points in defining established CFS/ME.

• To identify possible ‘early win’ interventions for phase 2 and early phase 3 clinical trials – e.g. targeted use of cytokines; melatonin for those with sleep problems.

 • To undertake genome-wide association studies (GWAS) to identify the genetic components of CFS/ME and possible new targets for intervention. This would be dependent on the availability of well characterised cohorts. • To develop more comprehensive outcome measures.

• To encourage work across the different existing cohorts (including trial cohorts), e.g. for assessing predictive markers of disease and confirming hypotheses generated in other data sets.

3.3 Group 2 – Research priorities and partnership models

Partnership models

• A co-ordinated, structured, strategic and collaborative research approach would be needed in moving the field forward.

• Exploring the use of other fatigue-related diseases (such as multiple sclerosis and cancer-related fatigue) as control models for CFS/ME, and utilising existing expertise from these areas in the CFS/ME field.

• Establishing a multi-disciplinary group involving not only scientists (e.g. immunologists, fatigue experts, neuroscientists, psychologists and psychiatrists, neurologists and geneticists) but also the clinical networks and health professionals.

• Pharmaceutical industry involvement would be beneficial, perhaps at a later stage. Research priorities

• Databases of patients with CFS/ME characterised according to agreed criteria. Phenotype identification could only progress if linked to good infrastructure with all groups using the same criteria. This could provide benefit not only in replication of studies but also of increasing ‘n’ numbers. It was also essential to collect biological samples from early-stage disease which would have no or minimal confounding factors which occurred with long-term disease. Good clinical diagnosis and standardised measurements and assessments were essential to enable comparisons across data sets. Therefore a collaborative approach with researchers working closely with clinicians and other health professionals would be important.

• Patient reported outcomes and quality of life measures.

• The establishment of tissue banks with samples from well characterised patients and controls.

• Improved definition of fatigue and improved understanding of fatigue mechanisms.

Page 9

• Virology and infection triggers – there was potential for virology to be studied in CFS/ME as part of the complex disease pathogenesis. In addition to continued research in this area it would be important for the XMRV study to be replicated before pursuing this avenue of investigation through to clinical trials.

3.4 Group 3 – Research priorities and new technologies and technological platforms.

New technologies/technological platforms

• Imaging technologies such as fMRI, EEG and MRS and pathological studies using tissue could be utilised for neuroanatomical studies and neurophysiological studies of fatigue.

• Better animal models were needed both of the whole disease and aspects of the disease physiology.

• Genetic studies (GWAS) – needed to be nationally and internationally standardised using well phenotyped samples.

• Improved data collection tools were needed. Research priorities

• Identification of phenotype and phenotypic subgroups. This would require access by researchers to raw data (not prior filtered) for replication studies and different measurable entities for different studies. It would also be important to extend the minimum clinical data currently collected.

• Psycho-physical studies – it was important to continue to undertake small and focussed pathophysiological studies investigating perception, behavioural and physiological response in patients.

• Establishment of longitudinal population-based studies including natural history cohorts which were well focussed and avoided selection bias. Data generated by these studies could be underpinned by co-ordinated tissue collections and repositories.

• Studies on neuro-immunological interactions.

3.5 During the plenary discussion the following points were highlighted:

• It was agreed to be important not to stigmatise the condition, both in terms of treating and caring for those with CFS/ME, and for attracting researchers to the field. CFS/ME was a complex disease that comprised the interaction of different biological, physical and psychological mechanisms. The interactions between these different mechanistic pathways were important and further mechanistic studies needed to be undertaken. Pathways may differ between individual patients and therefore the characterisation of phenotype(s) was paramount. Phenotype characterisation would facilitate the identification of biomarkers. However, given the complexity of the disease and the many current unknowns, this objective was likely to be achieved

Page 10

only in the longer term. The objective for the shorter term should be to increase the current knowledge base of the pathogenesis.

• Clarification of the definition of CFS/ME was important. Without this it would be difficult to encourage new researchers from other fields to undertake research in this area.

• Successful collaborative approaches required each stakeholder to take ownership of a particular area.

3.6 Professor Holgate briefly summarised the workshop outcomes which would be discussed by the CFS/ME Expert Group during the spring of 2010. The Group would prioritise the opportunities that were tractable for both the short and longer term and feed back the outcome to the community.

Professor Holgate thanked all the participants for their valuable contributions and closed the meeting.

For Presentation slides please refer to PDF

Open 3MB PDF on MRC website here Workshop Note and Presentation Slides 

or open here on ME agenda:

    Note of MRC CFS-ME Research Workshop 19-20 Nov 2009[1]

 

Documented involvement of viruses in ME/CFS: M Williams 30 December 09

Documented involvement of viruses in ME/CFS by Margaret Williams

One of a series – see notice below

Shortlink: http://wp.me/p5foE-2Di

Full text here in MS Word format: Documented involvement of viruses in ME 30.12.09

and at:

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.htm

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.pdf

Documented involvement of viruses in ME/CFS

by Margaret Williams

30 December 2009

For decades it has been known and shown that viruses play a role in ME/CFS. Now there is evidence of a direct association with a gamma retrovirus – XMRV – that disables the immune system in ME/CFS, thus allowing numerous latent viruses to re-activate, which could result in the protean symptomatology…

NOTICE

Magical Medicine: How to make a disease disappear – Hooper and Williams – Spring 2010

Prior to the publication of the MRC PACE Trial results in the Spring of 2010, Professor Malcolm Hooper and Margaret Williams will be releasing a series of linked documents addressing central flaws in the PACE Trial.

These documents form part of a more substantial document that has the provisional title

Magical Medicine: How to make a disease disappear

This document has a dedicated web page at:

http://www.meactionuk.org.uk/Magical-Medicine.htm

This web page will contain an easily accessible Contents page so that people can surf and then select whatever section (or part of a section) they may wish to look at.

Although he and Margaret Williams have previously addressed some of the issues contained in the substantial document, Professor Hooper thinks it essential for there to be a single, comprehensive narrative of events and information leading up to and involving the PACE Trial.

Magical Medicine: How to make a disease disappear

Professor Malcolm Hooper and Margaret Williams

Spring 2010

http://www.meactionuk.org.uk/Magical-Medicine.htm

Documents already published that form part of the larger PACE Response document:-

1. Interstitial cystitis and CFS (26th August 2009)

http://www.meactionuk.org.uk/Interstitial_cystitis_and_Chronic_Fatigue_Syndrome.htm

2. More evidence of inflammation in ME/CFS (14th November 2009)

http://www.meactionuk.org.uk/More-evidence-of-inflammation-in-(ME)CFS.htm

3. The role of viruses in ME/CFS // XMRV (21st November 2009)

http://www.meactionuk.org.uk/The-role-of-viruses-in-ME.htm

4. The MRC’s secret files on ME/CFS (10th December 2009)

http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

5. Statements of concern about CBT/GET for the Judicial Review (12th December 2009)

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.htm

6. Can the MRC PACE Trial be justified? (17th December 2009)

http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

and now this latest one:

7. Documented involvement of viruses in ME/CFS (30th December 2009)

http://www.meactionuk.org.uk/Documented-involvement-of-viruses-in-ME.htm

Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:

Shortlink:  http://wp.me/p5foE-2xK

Open as Word document:  Can the MRC PACE Trial be justified Williams 17.12.09

Also available at:  http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

 

Can the MRC PACE Trial be justified

by Margaret Williams

17 December 2009

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial.

Patients with ME/CFS and their families are in despair, because no-one in authority in the UK seems to be listening: as Mike O’Brien MP, Minister of State for Health, made plain at the APPGME meeting on 2nd December 2009, Ministers can no longer tell agencies of State what to do. This apparently means that, no matter what conclusions are arrived at or what recommendations are made or what evidence is put before a Minister, the Minister concerned can deny having any power to implement change. The Minister himself is reported to have said that he could not require the MRC to undertake research in any specific field, nor could he require Primary Care Trusts to follow Ministerial command. As far as ME/CFS is concerned, it seems that there is nothing the Government can – or will – do about the current situation.

It is apparent that the Government feels no duty of care towards those whose life has been devastated by ME/CFS, a situation that is borne out by Professor Stephen Holgate’s confirmation at the Royal Society of Medicine Meeting on 11th July 2009 (Medicine and me; hearing the patients’ voice) that the Government will not permit integrated research into ME/CFS.

This can only mean that the influence of the Wessely School over the lives of people with ME/CFS will continue and that their tactics of denial will remain unchallenged, no matter what the calibre of the biomedical evidence showing them to be wrong. As people recently drily commented on an ME group, those tactics include:

“load up your committees with your biased friends and pretend they are offering a fresh look; give really negative scorings to biomedical applications; try to stop biomedical papers getting published in the better known journals; make sure to keep on publishing psychiatric rubbish to bias the general medical population and scientific community against any other explanation, and give the impression that CBT/GET is all that is needed i.e. no need to waste all that money on silly biomedical projects” (LocalME@yahoogroups.com 6th December 2009) and

“ensure you use the sketchiest diagnostic criteria you can get away with; wherever possible, avoid seeing / talking to patients at all; never discuss / involve the severely affected; avoid using objective outcome measures; rotate the name of lead authors on papers and ensure you include plenty of reference papers from your psychosocial mates….” (LocalME@yahoogroups.com 7th December 2009).

As others have noted, the strategy is (1) to ignore ME; (2) to ensure that CFS is seen as a problem of false perception, then (3) to reclassify “CFS/ME” as a somatoform disorder (Co-Cure NOT:ACT: 12th January 2008), which is far removed from the reality of ME/CFS, the CNS dysfunctions of which are described by Dr Byron Hyde as being caused by “widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance….The evidence would suggest that ME is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed” (ibid).

Patients and their families, many clinicians and researchers are well aware of such strategies and tactics but – so powerfully has the Wessely School myth about ME/CFS been promulgated – have been unable to halt them.

As Dr Jacob Teitelbaum reported, the XMRV virus study clearly documents that (ME)CFS is validated within the mainstream medical community as a real, physical and devastating illness, “again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific…Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness” (Co-Cure RES: 4th December 2009).

There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured. Continue reading

Action for M.E: Initial responses to the APPG interim report

Shortlink: http://wp.me/p5foE-2s7

Action for M.E. publishes its initial responses to the Interim Report of the APPG on ME.

http://www.afme.org.uk/news.asp?newsid=702

News

Initial responses to the APPG interim report

03 December 2009

The All Party Parliamentary Group (APPG) on M.E.’s interim report on its Inquiry into NHS services for people with M.E./CFS, was launched yesterday in the presence of the Rt Hon Mike O’Brien MP, Minister of State for Health Services.

The Minister had been shown a courtesy copy of the report in advance of the APPG meeting.

He broadly supported the main thrust of the recommendations, although he questioned some points of detail. He was at pains to point out that budgets and responsibilities delegated to Primary Care Trusts meant that lobbying at the local level for better treatment of patients was usually more effective than looking towards ministerial intervention.

Nevertheless he acknowledged publicly that the implementation of the 2002 CMO report has not been developed sufficiently and that the system in the NHS was not good at dealing with complex illness such as M.E.

He later admitted, as a former Minister in the Department for Work and Pensions, that this Department also did not deal well with this illness.

The Minister identified three priorities:

1. To improve the quality and levels of service across all areas of the country and eliminate the variations in how patients are being treated.

2. To get agreement across the medical profession on a clear view about the clinical pathways for people with M.E.

3. To increase scientific research and our knowledge of the statistics of the needs of those with M.E.

Sir Peter Spencer, CEO, Action for M.E., invited Mr O’Brien to promote research as a key priority, because without a proper understanding of the biology we would not achieve the necessary agreement amongst doctors.

The Minister has agreed to write to the Medical Research Council, highlighting the need for research and to the Department of Health about the postcode lottery which exists for people with M.E.

A full transcript of the meeting will be posted on this website in due course.

Commenting today on the APPG’s interim report, Sir Peter said:

“It is of course disappointing that the full report with the supporting evidence has not yet been published owing to the limited resources available to the Inquiry group.

“However we recognise that it is nevertheless appropriate for the group to promulgate these recommendations early. This creates the opportunity to make the right impact with Health Ministers and with all major political parties at Westminster in order to establish cross party commitment to a longer term agenda that can be followed through when the next Parliament is formed after the election.

“The eleven recommendations in this interim report are welcome.

“There may not be anything that is particularly new here but together these recommendations form a powerful re-statement of the compelling need for improvement and for consistency throughout England in providing high quality healthcare to all people with M.E.

“Action for M.E. supports the emphasis on meeting the particular needs of children and the severely affected.

“We welcome the focus on training in M.E. for medical students, GPs and other healthcare professionals.

“And we strongly agree with the importance attached to biomedical research.”

Commenting on two recommendations in particular, Sir Peter added:

(Recommendation 1): “Establishing accurate estimates of people with M.E. is a major challenge. The pilot disease register which has been developed within the M.E. Observatory with money from the Big Lottery Fund could be expanded to play an significant role in this aspect of the needs assessment within each catchment area of the NHS.”

(Recommendation 4): “In remedying the lack of consistency in treatment options offered in different PCTs, the D of H should address variations in both quantity and quality; it should also implement the Government’s commitment to patient choice with treatments tailored to each patient’s specific needs and preferences.”

Inquiry into NHS Service Provision for ME/CFS 

Click link for PDF:  Official PDF of APPG Interim Report v1

ME Association: Interim report of the APPG on ME inquiry into NHS Services

Shortlink: http://wp.me/p5foE-2rY

http://www.afme.org.uk/news.asp?newsid=701

News

APPG press release on NHS inquiry

03 December 2009

The All-Party Parliamentary Group (APPG) on ME has today launched the interim report on its Inquiry into NHS Service Provision for ME/CFS.

Dr Des Turner MP, Chair of the APPG said the evidence submitted to the Group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

“Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of General Practioners to recognise the disease or diagnose it,” said Dr Turner MP.

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

ME/CFS sufferers continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

The interim report with recommendations is attached.

——————–

From the ME Association

ME Association: Interim report of the APPG on ME inquiry into NHS Services

A copy of the APPG Interim Report, along with the press release issued by the APPG, can be found in the NEWS SECTION of the MEA website: http://www.meassociation.org.uk

I will be preparing a fairly comprehensive summary of the APPG meeting and hope to have this completed by the end of today (Dec 3rd).

The summary will also contain the MEA response to the Interim Report.

Dr Charles Shepherd
ME Association

—————-

Interim report of the APPG on ME inquiry into NHS Services

Thursday, 03 December 2009 10:43

The interim report of the All Party Parliamentary Group on ME inquiry into NHS services for people with ME/CFS was launched at the group’s meeting in the Commons yesterday (Wednesday 2 December 2009).

In a press statement issued after the meeting, APPG chairman Dr Des Turner MP said the evidence submitted to the group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

Dr Turner said: “Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of general practitioners to recognise the disease or diagnose it.”

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

The parliamentarians said that people with ME/CFS continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

The interim report and recommendations can be read by clicking here:

http://www.meassociation.org.uk/images/stories/appg_interim_report_v1.pdf

The ME Association hopes to be publishing its own response to the interim report later today. When it is available, it will be published at this website.

——————–

Action for M.E. and Facebook; CISSD Final Report finally published

Action for M.E. and Facebook; CISSD Final Report finally published

WordPress Shortlink: http://wp.me/p5foE-2gi

Action for M.E. maintains a Facebook site at: http://www.facebook.com/actionforme

Over the past few weeks, questions and criticism around Action for M.E.’s governance, the way in which it relates to its membership, its policies and operation and its relationship with government have been raised by various users on its Facebook “Wall”.

Action for M.E. has chosen not to respond to these questions individually, on the Wall, itself, but by issuing a set of responses in a PDF document. The first document was this one: Facebook responses 20.10.09

A second, updated, set of responses was issued yesterday. It’s not clear whether these responses have been compiled by Action for M.E.’s new Policy Manager or by another member of staff, as the document is unsigned, but it’s interesting to see how the organisation has fielded these questions and concerns.

[To clarify – none of the questions for which responses were provided had been raised by me. I prefer to liaise directly with organisations for information, documents or for policy and position statements or, where applicable, obtain information via the Freedom of Information Act.]

Action for M.E. is becoming rather discomforted that its Facebook site is being used by some as a vehicle for raising political issues but you cannot take the politics out of ME. Users are already asking how the organisation intends to define “political”.

Those of us who were members, in 2003, of the joint charities’ message board “MEssage-UK” will recall how rapidly first Action for M.E., then AYME pulled out of this venture when faced with too many awkward questions; how the message board was then set for pre-moderation by the ME Association; how the moderator, Tony Britton, vetoed posts of a “political nature” without ever setting out how he was going to define what came under the heading of “political” and what did not; how the archives were sifted through for “contentious” messages by senior ME Association staff and then quietly excised without the authors being informed; how the board was closed down suddenly just days before the critical December 03 AGM in which Dr Shepherd was standing as a candidate in the Trustee elections…

When will our patient organisations learn that if they are going to place themselves on public platforms they first need to develop policies for the fielding of questions?

This latest set of responses can be opened in PDF format here:

PDF file: ONGOING FB Q and A document. 29.10.09

Answers to questions raised on the Action for M.E. facebook page, October 2009. Updated

or from Action for M.E’s website, here: http://tinyurl.com/ongoingFB-responses291009

—————-

One of the responses is for a question raised (note, not by me) around the CISSD Project, for which Action for M.E. had acted as principal administrators throughout the project’s life (2003 to 2007).

In response to this question, on Page 23:

Question: “What was your involvement in the CISSD project Conceptual Issues in Somatoform and Similar Disorders for which you received a grant of 67k and why was this project kept so secretive from your members? Only information about it was released when freedom of information act requests were made that pushed you in to a corner where you had to confirm you were involved in it. Was this CISSD project set up with the purpose as suggested by other sources with the intent to look at changing the ME/CFS ICD-10 coding* to that of a Somatoform disorder?”

Action for M.E prefaces its reply with, “As a charity, Action for M.E. is not obliged to answer questions under the Freedom of Information Act but provides information of its free will, as resources allow.”

I should like to clarify that the Freedom of Information requests submitted by me in relation to the CISSD Project had been submitted to the Institute of Psychiatry. Information resulting out of these requests under the FOIA is available here: https://meagenda.wordpress.com/dsm-v-directory/information-obtained-under-foi-act/

One of my requests to the Institute of Psychiatry had been for a copy of the December 2007 “CISSD Final Report” from Dr Richard Sykes to Action for M.E. I had suggested to the Institute of Psychiatry’s Legal Compliance Office that the report ought to be provided with a erratum note, by Dr Sykes, addressing a number of errors he had made in the document that had come to light in June 09, when an unauthorised copy of the text had been placed in the public domain.

Unfortunately, what the Institute of Psychiatry were provided with by Dr Sykes, in order to fulfil the request, is evidently an earlier draft of the December 2007 text. It is missing the Contents page, and there are other disparities between the text that I was provided with and the Final version. No erratum note had been attached, either.

However, as part of its response to the Facebook question, Action for M.E. has now elected to publish two files. The first is a copy of the December 2007 CISSD “Final Report” to Action for M.E., the second, a copy of the “Co-ordinator’s Report”, with a covering letter and summary.

Action for M.E. has finally put these documents in the public domain!

Open PDF files here:

CISSD project report 1

The CISSD Project and CFS/ME Report on the CISSD Project for Action for ME 

Conceptual Issues in Somatoform and Similar Disorders

Report to be read in conjunction with Co-ordinator’s Final Report

Richard Sykes December 2007

CISSD project report 2

Covering letter

The CISSD Project 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

Summary

FINAL REPORT OF CO-ORDINATOR   Richard Sykes PhD, CQSW

or from Action for M.E’s website, here:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf

 

In August, Action for M.E. had published an article titled “Classification conundrum” on pages 16 and 17 of Issue 69 of its membership magazine, InterAction.

You can read a copy of the article here, in an ME agenda posting dated 25 August 2009:

“Action for M.E. stuffs the elephant back into the cupboard”

Note that although the Project had been initiated by Dr Richard Sykes, Dr Sykes does not appear to have contributed to this article – basically an apologia piece authored by Dr Derek Pheby.

In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned in the article at all. Nor is the Project’s source of funding – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes. 

The December 2007 “Final Report” document has historical significance.  It also contains material (including an entire Appendix) which was omitted from the “CISSD Summary Report” that the ME Association published in June, this year, having negotiated with Dr Sykes for an article. (But having trumped Action for M.E., the MEA has made no comment whatsoever on the implications of the CISSD Project nor provided its membership with an analysis of the various papers and documents that came out of it.  Nor has the MEA made any comment or published any information on the progress of the ICD-10 and DSM revision processes for which the CISSD Project was initiated and has fed into.)

The document sets out Dr Sykes’ views, opinions and perceptions (and misperceptions) that had not previously been publicly available. It would have been appropriate for Action for M.E. to have negotiated with Dr Sykes for this document to have been published in 2007.  Instead, it kept the lid on this project –  a project that had been chaired by Professors Michael Sharpe and Kurt Kroenke and had involved many influential, international researchers and clinicians from the field of liaison psychiatry and psychosomatics – several of whom are now directly involved in the revision of the American Psychiatric Association’s DSM-IV.

In August, I called publicly on Action for M.E. to publish a copy of the CISSD “Final Report” on its website and to preface it with an erratum note addressing both the errors of coding within “Appendix B” of the document and also Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in ICD-10.

Chronic fatigue syndrome is listed in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index (ICD-10 Volume 3).

For the entry in question, see page 528, top right hand column:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

Since no erratum note has been published with these documents please be aware that where Dr Sykes has written “G33.3” and “G33.4” on Pages 12 and 13 of document:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf

this should read “G93.3” and “G93.4”.

Why has Action for M.E. published these documents without negotiating with Dr Sykes for an Erratum?

Why did Action for M.E. not publish these documents in August to accompany the article in InterAction?

 

*There is no coding for “ME/CFS” in ICD-10. 
Postviral fatigue syndrome is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
(Benign) myalgic encephalomyelitis is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index under G93.3.

—————–

Text version of December 2007 CISSD “Final Report” here: CISSD Final Report to AfME 2007

Text version of December 2007 CISSD “Co-ordinator’s Report” here: CISSD PROJECT Coordinators Final Report

June 2009 Summary Report on CISSD as published by the ME Association

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed was published in the June issue of the Journal of Psychosomatic Research:

Free access to both text and PDF versions of this Editorial at: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: https://meagenda.wordpress.com/dsm-v-directory/