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

Text version: Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Text version of Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-34M

or http://tinyurl.com/ReviewIiMEProposalText

For the Word file of this document and related information go here:

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

 

TEXT VERSION

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

1. Scope
2. Objectives
3. Service Provision Model
4. Funding
5. Conflicts of Interest

1. Scope

1.1. Geographic Scope

The scope of a proposal has direct bearing on project objectives and methodology and provides a framework within which the project can be assessed.

In the current proposal, it is unclear whether the Centre is aimed at servicing the Norfolk region only or the UK as a whole (which, presumably, would include Scotland and Northern Ireland). For example, there is reference to a “national centre of excellence for ME” whilst also discussing East Anglia as being a ‘region of opportunity’.

In particular, it is unclear whether there is a distinction in national and regional service provision between the separate clinical and research facilities detailed in the proposal (and located in Norfolk and Norwich University Hospitals, and the University of East Anglia/Norwich Research Park respectively).

If the clinical service is intended to be national, the following questions arise.

Why has Norwich been selected as a location (given that it has poor logistical accessibility for the rest of the country)?
Have other geographic locations and facilities been considered?
If so, how has their suitability been assessed and by whom?

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For both a national and regional remit, the following questions arise for the clinical service.

Why have Norfolk and Norwich University Hospitals (N&NUH) been selected to host the Centre’s clinical facility?
What specific types and levels of expertise would N&NUH bring to the Centre?
Does N&NUH health care staff have the capabilities and infrastructure to deliver the proposed service and, if not, how would this be addressed?
Have other facilities been considered?
If so, how has their suitability been assessed and by whom?

For a national and/or regional remit, the following questions arise for the research service.

What is the rationale for selecting the University of East Anglia/Norwich Research Park (UEA/NRP) to run the Centre’s research programme?
Has the UEA/NRP submitted a formal proposal for hosting the research programme?
If so, who has assessed this and how has it been assessed?
Have other research facilities been asked to submit proposals?
If so, who has assessed these and how have they been assessed?

The distinction between a national and regional service is further confused by the assumption that the Centre’s ‘translational’ model can be achieved only where the clinical and research services share the same geographic location.

The rationale for this assumption is unclear and, indeed, is contrary to the existing health care provision framework in the UK which operates through a countrywide network of medical facilities within (or co-ordinated by) the National Health Service (NHS).

1.2. Disease Scope

The document uses the nomenclature ‘ME’ (myalgic encephalomyelitis) to describe the condition that it intends to cover although there are further associated illnesses that overlap with ME and, indeed, may actually be the same disease (e.g. fibromyalgia, atypical MS, atypical lupus).

In addition, the UK medical profession uses other terms to describe ME, including Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Syndrome (CFS) and even just chronic fatigue.

The UK medical profession also lacks clarity and consistency in disease definition and diagnosis, an issue which, as pointed out in the proposal, can lead to patients being diagnosed incorrectly (either as having ME when they do not or not having ME when they do).

To avoid the considerable confusion and inaccuracy of existing nomenclature, definition and diagnosis, it may be preferable to adopt the term ‘neuroimmune disease’, as used by the US Whittemore Peterson Institute (WPI) which the proposal states is a role model for the Centre.

Page 3 

This may also avoid the potential confusion between the Centre of Excellence and existing NHS ME/CFS Centres (referred to in the proposal) which attract criticism for, amongst other things, their lack of biomedical intervention and focus on occupational and behavioural therapies.

In addition, this would provide a platform for further research into the human gammaretrovirus (HGRV) family which has been linked with ME and is the current focus of the WPI. The current proposal does not make reference to this retrovirus and this would seem an oversight given (a) the growing scientific interest in this area and (b) that donors to IiME’s Biomedical Research Fund approved support of the WPI’s UK study of HGRVs. It is also highly relevant for diagnostic purposes (a key focus of the proposal) given the likelihood that HGRVs will become, at very least, a biomarker for ME.

2. Objectives

Successful projects are underpinned by objectives which are specific, quantified, achievable and measurable.

The current proposal omits specific, quantified objectives or project ‘deliverables’, possibly because these are difficult to define given the lack of a precise scope.

Once the scope has been clarified, it may help to establish an overarching mission, a set of objectives and a timeline for implementation.

Given that this is a start-up project with a limited budget (see 4. Funding), it may be prudent to begin with a limited remit that can be met within a short lead-time and then used as a basis from which to develop more ambitious plans.

An example clinical mission would be: ‘To translate international biomedical research findings and therapies into clinical treatments for patients in Norfolk.’

Clinical objectives could include:

- to diagnose and treat x number of patients over time period y
– to deliver xx% improvement in patient health and well-being over time period y
– to train x number of N&NUH doctors in the diagnosis and treatment of ME over time period y

An example research mission would be: ‘To implement research programmes that complement and support those of the WPI.’

Research objectives could include:

- to complete x number of studies (by specified type) over time period y
– to replicate/validate findings of research study z
– to test the efficacy of treatments a, b and c over time period y

The proposal lists eleven project benefits and certain of these could be classed as deliverables (e.g. domiciliary services) but would require greater detail based on a

Page 4

quantified top line objective (e.g. diagnosis and treatment of a specified number of housebound patients pa).

All objectives would require an accompanying plan for delivery and methods of measurement and assessment.

3. Service Provision Model

In the absence of specific and robust objectives to use as a benchmark, it is difficult to assess the potential outcome efficacy of the proposed service model although questions about operational efficiency can be raised at this stage.

The diagram in figure 1 is a graphic representation of the service provision model described in the proposal. The shaded organisations are those which, combined, form the Centre of Excellence.

Fig 1. Overview of assumed service provision model

The proposal describes this as a “simple but effective structure”, although it could be argued that the model is, actually, quite complex given the number of stakeholders and communication pathways that are involved.

Page 5

In addition, four separate organisations and geographic locations constitute the Centre of Excellence itself, which makes it a concept rather than a single entity, and so conflicts with the proposal’s underlying theme of a closely integrated operation.

The responsibilities of each of the organisations within the Centre are unclear from the proposal, as are how they will inter-relate and how communication and control will be managed.

In particular, the proposal requires more detailed explanation of the roles of Norfolk PCT and N&NUH, not only in terms of how they may provide patient services regionally and/or nationally, but also in terms of their potential model for other PCTs and hospital trusts to follow, as well as their operation within the NICE (National Institute for Health and Clinical Excellence) guidelines for treating ME.

The proposal states that “a new commissioning director at Norfolk PCT…is supporting the steering group’s views”. It would be helpful to name the individual in question and also include their input in detail.

The position of a ‘clinical biomedical lead consultant’ is mentioned and also that candidates have been approached for this role, although their remit and responsibilities, selection and measurement criteria, and reporting structure are not explained. Similarly, it is unclear how the ‘GPs with special interest’ who support the lead consultant will be identified, enrolled, trained and funded.

The proposal recognises the critical importance of training health care staff (and also mentions ‘visiting experts’) although it is unclear who will be responsible for training the N&NUH staff, which staff will be trained and how training will be implemented and monitored.

Staff training will be paramount to the Centre’s success, particularly given the NHS’ current dearth of biomedical knowledge about ME and its inappropriate and, sometimes, harmful treatment options for the disease (as per the NICE guidelines, mentioned above). IiME needs to demonstrate that the NHS’ long established and entrenched misunderstanding of ME can be corrected, and swiftly, if the Centre is to gain the confidence of patients and commitment of financial donors.

With specific reference to IiME’s involvement in the project, the proposal would benefit from more detailed explanation of the following.

For each of the three IiME entities (charity, limited company and steering group):

- role
– management structure
– governance
– overlap with the other two entities

For the charity and steering group specifically:

- members and/or trustees (other than the two named in the proposal)
– how members/trustees are appointed
– who appoints members/trustees
– to whom members/trustees are accountable
– how members/trustees are monitored

Page 6

For IiME Ltd specifically:

- when the company was/will be incorporated
– business classification and trading objectives
– share structure and ownership
– board members and responsibilities
– relationship with Norfolk PCT and N&NUH (given that the proposal refers to IiME Ltd supporting service commission by the former from the latter)

In addition, it would be helpful to understand how the Centre’s work might be integrated with that of other ME research organisations such as ME Research UK (currently funding a HGRV study in Sweden), the UK CFS Research Foundation (supporter of Dr Jonathon Kerr’s research for many years), as well as with its stated role model, the US WPI.

4. Funding

The proposal omits a top line funding requirement, a budget break-down and a cost-benefit analysis for the project.

Norwich local newspaper, EDP24, has stated: “Discussions will be going on over the next few months and once a decision has been made, funding will begin to the tune of £150,000 a year.”²

This amount seems low in the context of the proposed service provision model and particularly in comparison to the Center for Molecular Medicine (home of the WPI at the University of Nevada) which cost $77 million to establish.

The proposal states that funding for research would be “organised and provided by the charity and the UEA” although there is no further detail of how this would be supported nor who would fund the clinical element.

As a consequence, the following information remains to be confirmed.

The estimated cost (overall and breakdown) of establishing and maintaining the Centre over a given time period (for example, five years).

The share and source of funding to be provided by each of the organisations involved in the Centre.

How the funds will be raised by each of the contributing organisations.

Methods for monitoring expenditure, measuring outcomes and reporting to fund contributors.

For those funds raised via IiME (the charity), whether donors will contribute to the Centre as a whole or to specific research and/or clinical projects.

For IiME (the charity), the share of funding to be sourced via the following:

- general donations to the charity;
– profits from sale of IiME’s annual conference DVD;

Page 7

- donations to IiME’s Biomedical Research Fund;
– donations to a separate Centre specific fund.

•  Whether, after completion of the WPI’s UK study, any residual monies in IiME’s Biomedical Research Fund will be transferred to the Centre or remain in the Fund for further research projects, and whether donors’ approval will be sought for either course of action (as per the precedent set when monies were reallocated from Dr Kerr’s withdrawn research to the WPI’s UK study).

5. Conflicts of Interest

Fund donors may wish to see further explanation for, and clarification of, the following potential conflicts of interest.

Dr Ian Gibson’s involvement in this project will raise concerns with those who did not welcome his unofficial ‘Gibson Inquiry’ into ME (as referenced in the proposal) and the subsequent uncorrected ‘e-report’ which was published in October 2006³. There were significant criticisms of the way that Dr Gibson and his panel undertook this inquiry (which was a personal project and not a formal Parliamentary Inquiry or Report), such as the involvement of Lord Turnberg, a known supporter of cognitive behavioural therapy (CBT) and graded exercise therapy (GET), and the absence of proper consultation with the inquiry’s constituency of interest at all stages throughout the life of the project. Previously a Labour backbencher, Dr Gibson was barred from standing for the party in the 2010 general election following questions about his ministerial expenses.

Dr Fiona Poland of UEA’s Institute of Health and Social Science Research is working in partnership with Action for ME (AfME) and a network of universities on part of a major ME research project sponsored by the Big Lottery Fund (i.e. reporting and developing early findings on the impact of the illness and available means of support). The association between UEA and AfME will raise concerns with a growing number of patients who openly criticise the latter’s role, agenda and efficacy, particularly in terms of its apparent unwillingness to support biomedical ME research and to challenge the psychosocial paradigm.

The Norwich Research Park is a joint venture between the UEA, and amongst others, the Sainsbury Laboratory which, in turn, is supported by the UEA and the Gatsby Foundation. The Gatsby Foundation is one of a number of Sainsbury Family Charitable Trusts which share the same administrators and counsels. This includes the Linbury and Ashden Trusts which have provided funding for the RNHRD NHS FT, Bath (the ‘Min’) and the University of Bristol’s controversial trial of the Lightning Process on children and for which IiME has stated its public opposition.

The Institute for Food Research (IFR) and The Genome Analysis Centre (TGAC) are institutes of the Biotechnology and Biological Sciences Research Council (BBSRC). The BBSRC grant-aids the John Innes Centre (based in Norwich Research Park) which hosts the Sainsbury Laboratory and the TGAC. BBSRC is one of seven Research Councils that work together as Research Councils UK (RCUK). It is funded from the Government’s Department for Business, Innovation

Page 8

and Skills (BIS). This is a complex organisational structure which makes it difficult to achieve transparency in funding governance and also to identify potential conflicts of interest.

It is unclear from the proposal whether ME support groups in the Norfolk region (or nationally, if the scope is such) are involved in this project and the degree to which they have provided input and support. It is also unclear whether there has been any wide-scale patient consultation for this project or if any is planned in the future.

References

1 Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk August 2010
‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’

2 EDP24 “Norwich centre for ME sufferers planned” 03.08.10

3 THE ONE CLICK GROUP REPORT THE GIBSON ‘INQUIRY’ 17 January 2007

 

Chris Douglas is an ME sufferer and ex-corporate project manager.

douglas_chris@hotmail.co.uk

© Chris Douglas 2010

Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-33z

or http://tinyurl.com/ReviewIiMEProposal

At the 5th Invest in ME International ME/CFS Conference held in May, this year, a proposal was announced for the establishing of a “Centre of Excellence for ME” in Norfolk. To the best of my knowledge, Invest in ME had undertaken no national consultation with ME patients before drawing up its proposals.

Today I am publishing a review of Invest in ME’s proposal prepared by Chris Douglas.

A text version of this review is published in the next post.

 

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Open Word document here: Norfolk Proposal Review 27.08.10

A text version of this Word document is published in the next post

 

Related information

Invest in ME

“Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.”

Invest in ME is constituted as a Trust, registered with the Charity Commission and run by a committee of three Trustees/Directors. Invest in ME is not a membership organisation. The organisation was founded in 2006 by carers and patients, Sue Waddle, Richard Simpson and Kathleen McCall (current chair). Ms Waddle has since stood down as a Trustee.

http://www.investinme.org/Research%20-%20ME%20Institute.htm

Invest in ME

A UK Centre for Biomedical Research into ME

Read the announcement here

The Research Proposal published by Invest in ME in July can be read here in PDF format:

       Biomedical Research Institute Proposal July 2010

“A New Era in ME/CFS Research 

“An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis”

“A VISION FOR THE FUTURE

“Recent biomedical research and advances in knowledge and treatment regarding Myalgic Encephalomyelitis have brought more urgently needed awareness of this disease. In the East Anglian region of UK an opportunity now exists to bring real benefit to patients and establish a unique capability which will attract attention and recognition from across UK and Europe.”

 

Media coverage

Great Yarmouth Mercury

Hopes for ME centre in Norfolk raised

31 August 2010

“…The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

“Now the charity has offered to send some of the UEA researchers to a biomedical research symposium in Australia at the end of the year.

“Mr Simpson said: “This would involve them discussing work with the top ME researchers and clinicians in this field from around the world.

“Discussions are under way, and we are really hopeful this will move things forward. The centre could change the lives of patients with ME. Early diagnosis is so important, and this centre would help establish that.’

“The charity is also planning to organise a conference in Norwich with the UEA and the Norfolk and Norwich University Hospital and is lining up discussions with the US Whittemore Peterson Institute, an institute for neuro-immune disease in Nevada that helps thousands of people with ME through research, scientific developments and treatment…”

———————

Norwich Evening News

Plans for world class Norfolk centre

Sarah Hall  |  27 August 2010

———————

Environmental Illness Resource Blog

UK to get WPI Inspired Chronic Fatigue Syndrome Research and Treatment Centre

News – Chronic Fatigue Syndrome News

Matthew Hogg  |  13 August 2010

———————

EDP24

Norwich centre for ME sufferers planned

Sarah Hall  |  3 August 2010

Summary ME Association Board of Trustees meetings 14, 15 June 2010

Summary of ME Association Board of Trustees meetings 14 and 15 June 2010

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

ME Association  |  17 June 2010

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees.

These meetings took place at our Head Office in Buckingham on Monday afternoon, June 14th and on Tuesday morning, June 15th 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.

MEA website: http://www.meassociation.org.uk

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
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 April 2010. There has been a drop in some areas of income during the past few months when compared to the same period in 2009 – unrestricted donations and bank interest in particular. As a result, general expenditure is currently running slightly ahead of unrestricted income.

However, income from fundraising has shown a significant and welcome increase over the same period in 2009 and in order to cope with the increased demand on fundraising support services it was decided to create a new part-time post to deal with fundraising administration with immediate effect. Details about this new post will be placed on the MEA website when trustees have agreed the job description.

There has also been a significant increase over the past twelve months in the ring fenced funding held by the Ramsay Research Fund for research purposes.

Trustees once again reviewed the current ‘best buys’ for interest-gaining options in relation to money kept in the business and Ramsay Research Fund deposit accounts.

The new computer equipment for Head Office staff is now fully installed and working in a satisfactory manner. GB reported that a few minor problems have still to be resolved.

Trustees discussed some possible changes to The MEA Memorandum and Articles of Association to take account of expected new charity legislation.

Trustees passed on best wishes to Lucy Kingham, at Head Office, who will be taking maternity leave in October.

FORWARD PLANNING

Trustees held a further discussion on the future growth of the MEA. This work includes looking at areas of priority for 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. Read more of this post

Comment published re: ‘The self-expressed needs of people with CFS/ME: a systematic review”

Comment by sociologist, Angela Kennedy, published in response to paper: ‘The self-expressed needs of people with CFS/ME: a systematic review”

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

In March 2006, Action for M.E. were awarded over £500,000 by the Big Lottery Fund to establish a National ME Observatory. Last month, Open Access Publisher, BioMedCentral, published the first paper to appear in the peer-reviewed scientific literature out of the ME Observatory.

The Observatory Steering and Management Groups are charged with the oversight of six projects:

1. Health and Social Services
2. Treating People with M.E
3. National Disease Register
4. Occurrence and Severity of M.E
5. Quality of Life
6. Literature Review and Services Database

As part of the Observatory’s Year One Tasks, Action for M.E. agreed with the Big Lottery Fund that a website would be created for the purpose of publishing information about the business of the Observatory. This dedicated website has failed to materialise, although a sum of £2000 had been projected within the overall funding proposal costings specifically for the creation of “an internet-website for CFS/ME Observatory” for the dissemination of information to a target audience of “lay public, CFS/ME community, Professional, carers, Stakeholders.”

Instead, Action for M.E. carries some limited information on the National Observatory hosted on its own web pages.

The Observatory completes its third year of operation in April

Additionally, Action for M.E. has failed to set out lines of accountability for those responsible for the management of the Observatory Project and for the oversight of the spending of £500,000 of public money and make these available to its membership and to the wider public, either via a dedicated website, via web pages on its own website or through any other means;  the names of those who sit on the Observatory Steering and Management Groups are not available on Action for M.E.’s website and have not been published in its magazine, InterAction – with only the names of the five lay members of the Steering Group and the members of the Reference Group being published.

(For a list of members of the Steering Group, Management GroupReference Group and Others involved in the project see the end of this ME agenda posting from October 2008.)

No channel of communication exists between the Project’s management and the public. No information is available online about the progress of the various epidemiological research studies being undertaken, patient literature, study participant questionnaires, methods etc.

Therefore, the operation of the Observatory, those responsible for it and the progress of the research studies being undertaken through it cannot be monitored by the public because this information is not available for public scrutiny.

Paper:

Drachler MD, Leite JC, Hooper L, Hong CS, Pheby D, Nacul L, Lacerda E, Campion P, Killett A, McArthur M, Poland F.

The self-expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review. BMC Public Health.;9(1):458.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

On 12 December 09, The ME Association reported:

‘The self-expressed needs of people with CFS/ME: a systematic review”

The results of an extensive review into the perceived needs of almost 2,800 people with ME/CFS have been published online by a team from the national ME Research Observatory – which is coming to the end of its three-year funding by the Big Lottery.

The team – led by epidemiolgist Dr Derek Pheby – trawled through thousands of peer-reviewed studies and personal stories to find those which helped build up a picture of the things people with ME say they need to achieve wide-spread respect and recognition in the early 21st century.

A 30-page summary entitled ‘The self-expressed needs of people with CFS/ME: a systematic review” was published in the online journal “BMC Public Health” on 11 December 2009.

“That so many needs are unmet is surprising in developed nations and may be considered unacceptable by many”, commented the authors.

The idea for the review came from Maria de Lourdes Drachler, from the School of Allied Health Professionals at the University of East Anglia, with contextual design support from UEA colleagues Lee Cooper and Fiona Poland.

The researchers say they reviewed 4,713 titles and abstracts, 190 full texts of published papers, and 32 other studies. “The studies conveyed the needs of 2,788 people with CFS/ME, plus many more in over 180,000 on-line discussion postings.”

Dr Pheby commented:

“Assumptions are frequently made, by medical professionals and others about what constitutes a good outcome in ME. All too often the views, hopes and aspirations of people with ME themselves are the last things to be considered. This ground-breaking piece of research rectifies that omission, by bringing together in one report all the published research which does consider the question of what people with ME themselves want and need. It takes a wide approach, looking not only at medical outcomes but also at what people with ME need to enable them to function in the social environment, not only as patients, but also as family members, citizens, and members of the wider community.

“The report, prepared mainly at the University of East Anglia, is the first report from the National ME Observatory project to appear in the peer-reviewed scientific literature. The Observatory approach, from the outset, has been to place people with ME at the centre of the research process, from the project Steering Committee downwards, and this is the first of a series of reports which are putting that philosophy into practice.”

Abstract

http://www.biomedcentral.com/1471-2458/9/458/abstract/

Research article
The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review
Maria de Lourdes Drachler1, Jose Carlos de Carvalho Leite1, Lee Hooper2 , Chia Swee Hong1 , Derek Pheby3 , Luis Nacul4 , Eliana Lacerda4 , Peter Campion5 , Anne Killett1, Maggie McArthur1 and Fiona Poland1

1 School of Allied Health Professions, University of East Anglia, Norwich, NR4 7TJ, UK
2 School of Medicine, Health Policy and Practice, University of East Anglia, Norwich, NR4 7TJ, UK
3 Plaishetts House, Hadspen, Castle Carey, BA7 7LR, UK
4 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK
5 Hull and East Yorkshire Medical Research and Teaching Centre, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ, UK

author email corresponding author email

BMC Public Health 2009, 9:458doi:10.1186/1471-2458-9-458

Published: 11 December 2009

Abstract

Background
We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)

Methods
We carried out a systematic review of primary research and personal (‘own’) stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.

Results
Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.

Conclusions
Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends – most importantly – on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.

Free Full paper (text) : http://www.biomedcentral.com/1471-2458/9/458

Free Full paper (PDF Format): http://www.biomedcentral.com/content/pdf/1471-2458-9-458.pdf

Free Pre-publication history: http://www.biomedcentral.com/1471-2458/9/458/prepub

 

Published Comment in response to The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review

http://www.biomedcentral.com/1471-2458/9/458/comments

The ‘validity’ of patient needs in ‘CFS’?

Angela Kennedy (01 February 2010) n/a

This is a comment on one key aspect of the article.

In the ‘strengths and limitations of the review’ section, even after providing an account of the impact of the illness on sufferers, including the burdens of disbelief from others, refusal of benefits, social exclusion, and other problems of certain needs not being met (the kind of needs that can reasonably be said to be present in all patients of serious illness?) and presenting such evidence as part of a systematic review at that, the De Lourdes et al paper has this to say:

“…The review has not examined the validity of the expressed needs of people with CFS. One theory links the early parental environment with neurobiological development via the hypothalmo-pituitary adrenal axis, changing stress responsiveness through life in those with CFS/ME (reference cited by De Lourdes et al is Van Houdenhove, 2002). This could potentially result in increased ‘neediness’ in those with CFS/ME but would not invalidate those needs…”

Van Houdenhove’s account (an editorial) is immersed in psychogenic explanations for ‘CFS/ME’, based on a concept of “unexplained therefore considered psychogenic by default”, personality problems (including a “narcisssistic tendency to deny personal limits” and “a negative perfectionist attitude induced by overcritical parents” etc.) and somatic symptoms as resulting from “intrapsychic conflict.” These are only a few examples of the eclectic mix of alleged psychopathology present in patients according to Van Houdenhove: significantly, organic aetiology as an explanation is signficant by its absence, despite the large amount of research literature demonstrating organic abnormalities in patients given ‘CFS’ or ‘ME’ diagnosis.

De Lourdes et al then go on to state:

“…As reviewers we have taken the needs expressed by people with CFS/ME at face value – even if their need for support is higher than in others, the needs of people with CFS/ME are expressed very consistently and their accounts of their needs deserve to be heard and responded to…”

This may seem a laudable sentiment, but by assuming, per se and without substantiation, that somehow ‘CFS/ME’ patients needs are ‘higher’ than in other patients with serious chronic illness (for example, Heart disease, AIDS, Motor Neurone Disease, Parkinsons, Multiple Sclerosis, spinal injuries, strokes), rather than the more likely problem that such needs that would be met in those disease sufferers are NOT actually being met in ‘CFS/ME’ patients – likely due to ‘psychogenic dismissal’ (Kenneth Vickery, in Mackarness, 1980: xi-xii) , De Lourdes et al are not actually taking the needs expressed by CFS/ME sufferers ‘at face value': indeed they are reifying the very assumptions that lead to psychogenic dismissal and its accompanying material and social inequalities for sufferers. By including the Van Houdenhove narrative, without raising the legitimate and rational objections that could be raised to his arguments, the De Lourdes et al comments lead to people diagnosed with ‘CFS’ or ‘ME’, once again, being reduced to strange, needy personalities with mean parents, who feel somatic symptoms because they are like that.

REFERENCES

Mackarness, R. Chemical Victims (1980) Pan Books, London.

Van Houdenhove, B. ‘Listening to CFS: Why we should pay more attention to the story of the patient’ Journal of Psychosomatic Research 52 (2002) 495-499.)

Competing interests

Social scientist critically evaluating ‘psychogenic’ explanations for somatic illnesses. Mother of disabled adult who was given a ‘CFS/ME’ diagnosis as a child.

MEA: Summary Board of Trustees meeting 15 and 16 June 2008

Summary of ME Association Board of Trustees meetings held on Mon 15 June and Tues 16 June, 2009

http://www.meassociation.org.uk/content/view/893/161/

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon 15 June 2009 and on Tuesday morning 16 June 2009. Informal discussions also took place on a number of issues on the Monday evening.

After the Board meeting on Tuesday the charity’s AGM was held in the afternoon. Results of trustee elections were also announced. A brief summary of the AGM, along with the election results, and a short post-AGM Board meeting, is included at the end of this summary.

Please note that this is a summary of the Board meetings and AGM – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the current financial situation. Trustees then discussed the monthly accounts for the period up to April 2009. All of our main sources of income are holding steady and in some cases – ie donations and fundraising, literature sales, membership subscriptions – are slightly or significantly up on the same period last year. This is reassuring news given the difficult economic climate and the effect that this is having on the charity sector in general. Income for general funds is continuing to remain roughly in line with expenditure, despite the fall in interest rates on funds held. Trustees made some minor changes to banking arrangements in order to maximise interest rates on the various bank balances. Read more of this post

National ME Observatory: Where’s the website?

AfME National ME Observatory: Where’s the website?

Shortlink: http://wp.me/p5foE-1sa

[The following has been posted on Action for M.E's forum, this morning.]

Yesterday (2 April), Norfolk newspaper edp24 published on its website a piece on today’s Observatory Workshop in Norwich at which:

See:  http://tinyurl.com/observatorynorwichworkshop

“Patients, health professionals and others interested in the conditions [...] will hear about the [National ME Observatory] findings so far and asked for their ideas about how the findings can be of most use to patients.”

2 April marks the start of Year 3 of the Observatory Project – the final year for which Big Lottery funding is being provided. It had been agreed with the BLF that certain tasks would be completed within certain years of the Project’s life.

*According to Page 6 of the BLF’s Grant Offer, dated 20 March 2006:

Agreed year 1 Tasks for Action for M.E. were:

  • Initiation of National ME Observatory collaboration, including media announcements in lay and professional media, and establishing communication links with the CFS/ME community.
  • Website will contain some information on support for social inclusion of people living with CFS/ME and their families in England.

Agreed year 2 Tasks for Action for M.E. were:

  • Expansion of web-based communication facilities for Observatory, in order to improve facilities for dissemination of the results of the project, and preparation of strategy for succession funding.
  • Workshops involving people benefiting from research.

Agreed year 3 Tasks for Action for M.E. were:

  • Dissemination of results through workshops reporting back to people with CFS/ME, conferences, publications, the media and web-based facilities, and submission of research proposals for further funding.

*In Table 10, Page 46, of Action for M.E.’s funding application document Establishing A Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) OBSERVATORY FOR SOCIALLY-INCLUSIVE EPIDEMIOLOGICAL AND SOCIAL RESEARCH INTO CFS/ME submitted to the Big Lottery Fund in 2005, a figure of £2000 was projected for “The internet-website for CFS/ME Observatory” for the dissemination of information to a target audience of “lay public, CFS/ME community, Professional, carers, Stakeholders”.

But no dedicated web facility for the dissemination of information about the Observatory Project was launched during Years 1 and 2 and the Project has now entered Year 3.

Action for M.E. has failed to set out lines of accountability for those responsible for the management of the Observatory Project and for the oversight of the spending of £500,000 of public money and make these available to its membership and to the wider public, either via a dedicated website, via web pages on its own website or through any other means; there is virtually no information available online around the work of the Observatory, including the names of those who sit on the Observatory Steering and Management Groups.

No channel of communication exists between the Project’s management and the public. No information is available online about the progress of the various epidemiological research studies being undertaken. Therefore, the operation of the Observatory Project, those responsible for it and the progress of the research studies being undertaken through it cannot be monitored by the public because this information is not available for public scrutiny.

With the Project entering Year 3, what is the reason for Action for M.E.’s failure to set up a website for the dissemination of information about the Observatory in accordance with Tasks agreed with its funding body, the BLF, in 2006?

*Information provided under Freedom of Information Act

Suzy Chapman

03 April 2009

Summary: Meeting, MEA Board of Trustees 17 March 2009

Summary of meeting, ME Association Board of Trustees Tuesday, 17 March 2009

This is a summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 17 March 2009. Informal discussions also took place on a number of issues the night before. Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

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)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the financial situation, including a discussion on the final monthly accounts for the year ending December 2008. Despite the very difficult economic climate for charities it was encouraging to note that income from subscriptions, gift aid, advertising, literature sales and general fundraising for 2008 was slightly up on 2007. Income for general funds was also roughly in line with expenditure.

However, like all charities we are now facing a situation where people are likely to be reducing the amount of money they are able or willing to give to the charity sector. At the same time, demand on our support and information services is increasing, and may well see a further significant increase once the government’s new welfare/benefit reforms start to take effect.

Trustees and staff agreed to continue to maintain very tight control over expenditure and to pursue the best rates of interest on money held in our reserve accounts – where there has been a very dramatic fall in income as a result of the base rate cuts over the past few months. Read more of this post

Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on “CFS/ME”

html version:  http://www.meactionuk.org.uk/Compilation_of_Professional_concerns.htm

Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on “CFS/ME”

by Margaret Williams  | 13 March 2009

In his Approved Judgment in the Judicial Review of the NICE Clinical Guideline 53 on “CFS/ME” released today, the Judge (Mr Justice Simon) stated:

“The circumstances are not such as to lead a fair minded and informed observer to conclude that there was a real risk of bias among the members of the GDG.”

Commenting on today’s Judgment, NICE’s Press Statement says: “Professor Peter Littlejohns, NICE Clinical and Public Health Director, responded to the High Court judgment saying…We are pleased that all members of the GDG and those involved in selecting the GDG were totally exonerated from the unfounded claims made against them”

http://www.nice.org.uk/media/001/6F/CFSMEJRJudgementStatement130309.pdf  ).

Read full document here on ME agenda: 14pp MS Word:  Compilation of Professional Concerns by Margaret Williams

MEA: Summary Board of Trustees meeting: 27 January 2009

Ed: The MEA has published a summary of its January meeting of the Association’s Board of Trustees. 

No update on the progress Dr Des Turner’s proposed APPG on ME inquiry into NHS service provision for people with ME is reported ( see previous posting: Next meeting of the APPG on ME ).

No date appears to have been set, yet, for a February meeting of the APPG on ME.

The summary informs that the second meeting of the MRC’s “Expert Group on ME/CFS Research” is planned for March.  The MRC advised me in January that revisions to the group’s Terms of Reference are anticipated to be agreed at this second meeting of the group and that a copy will be provided to me under the FOI Act as soon as the Terms of Reference are agreed.   A copy will be published here on ME agenda.

The web pages for the entry on “Chronic Fatigue Syndrome” on the NHS Choices website, referred to in the summary below, can be found here

——————–

ME Association | 30 January 2009

ME Association: Summary Board of Trustees meeting: 27 January 2009

This is a short summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 27 January 2009. Informal discussions also took place on a number of issues the night before.

Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:
Mark Douglas (MD)
Rick Osman (RO) – Vice Chairman
Ba Stafford (BS)

FINANCES

ED reported that overall income from subscriptions, donations, gift aid and general fundraising for the year ending December 2008 has been roughly in line with expenditure, which included some significant additional items due to the Head Office move at the beginning of 2008. This is very encouraging given the major economic problems that started to emerge during the latter part of 2008. However, like all charities we are now facing a situation where people may be reducing the amount of money they are able or willing to give to the charity sector. And at the same time demand on our support and information services may well start to increase. Trustees agreed to continue to maintain a very tight control over expenditure and to secure the best rates of interest on money held in our unrestricted and restricted (ie research fund) reserve accounts – where there is going to be a significant fall in income as a result of the base rate cuts.

The annual stocktaking of literature and goods for sale has been successfully completed.

FUNDRAISING INITIATIVES

Amazon Walk to raise funds for a tissue and post-mortem bank: BS had sent in an email report on Ed Stafford’s progress on the Amazon Walk. Ed’s most recent blog posting comes from Milagos, Peru. He will shortly be collecting his visa for entry into Brazil – which makes about 3,000 km to go as the crow flies!. Progress can be followed on the Amazon Walk blog at www.walkingtheamazon.com . Ed’s fundraising page for ME research at JustGiving can be found at: http://www.justgiving.com/walkingtheamazonmeresearch . Just over £5,000 has been raised so far.

Mobile phone and ink cartridge returns and trolley coins Trolley coins can still be ordered using the pdf ORDER FORM on the MEA website (www.meassociation.org.uk) ,or the insert in the February issue of ME Essential magazine, or by phoning MEA Head Office: 01280 818964/818968.

Fundraising information TB produced a draft layout for our new fundraising information leaflet.

A number of other fundraising initiatives were discussed, including a decision to once again sell Christmas Cards in 2009. A number of possible designs were considered.

2009 AGM AND TRUSTEE ELECTIONS

Trustees agreed to a timetable for the 2009 AGM and trustee elections. The AGM will take place at Head Office in late June or early July. Trustees standing for election this year are Mark Douglas and Barbara Stafford. Further information on the AGM and trustee elections will appear in the February issue of ME Essential magazine.

We are very keen to hear from anyone who would like to discuss the possibility of joining the MEA as a trustee. Applications are welcome from people with ME, carers, and anyone who has skills 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.

NICE JUDICIAL REVIEW

CS updated trustees on administrative arrangements for the NICE judicial review. The two day Hearing will take place in the High Court in London on 11 and 12 February 2009. A representative from the MEA will attend the Hearing. More information, as it comes in, will appear on MEA website:

http://www.meassociation.org.uk/content/blogcategory/30/161/

PARLIAMENTARY

APPG Inquiry into NHS Services CS reported on progress with the Inquiry that has been initiated by Dr Des Turner, Chairman of the APPG. Further information will appear on the MEA website news section as it becomes available.

APPG The next meeting of the APPG is intended to take place in February and it is hoped that there will be a presentation from Jonathan Shaw, Minister for Disabled People. As soon as a date becomes available it will appear on the MEA website news section. The minutes of the 8 October meeting can be found on the MEA website (news section archive).

Countess of Mar’s Group: FORWARD ME CS reported on the second meeting of this group that took place at the House of Lords on Tuesday 18 November. A website has been set up where information about the group and minutes from meetings are available. A summary of the November meeting will appear in the February issue of ME Essential magazine. Forward ME website: www.forward-me.org.uk

RESEARCH

Ramsay Research Fund (RRF) funding for Professor Julia Newton et al, University of Newcastle CS updated trustees on the new research study into muscle function in ME/CFS that was approved at the last Board meeting in November. Further information about this study can be found at the end of this summary.

ME Observatory Steering Group CS reported that the next Steering Group meeting will take place on Tuesday February 3.

Post-mortem tissue bank feasibility study CS reported that the next meeting of the Steering Group that is overseeing this new item of research that will be examining various aspects of how an ME/CFS specific tissue/post-mortem bank could be set up will take place on February 3rd. CS will also be having a separate meeting with the researchers on Monday 2 February. It was agreed that CS should visit one of the existing post-mortem/tissue banks in the UK to take this preparation forward.

Medical Research Council (MRC) Expert Group on ME/CFS Research CS updated trustees on the current situation regarding this group, which has been set up by Professor Stephen Holgate, and reported on the first meeting of the group that was held in London on 15 December. The MEA gave a presentation on the role of the charity sector in initiating and funding research. A summary of this meeting will appear in the February issue of ME Essential magazine. A further meeting is being planned for March.

Ramsay Research Fund constitution Trustees agreed to start work on a new constitution for the Ramsay Research Fund which will be more relevant to the current situation regarding ME/CFS research.

Application for funding in relation to post-mortem research Trustees discussed a new funding proposal that is awaiting ethical approval.

Other applications for research funding CS updated trustees on several other preliminary applications for research funding that have been received.

Practice nurses’ attitudes to cause and management of ME/CFS Trustees discussed the results of this recently published research paper, which indicates a very poor understanding of the pathological factors that may be involved in the causation of ME/CFS. Some of the nurses who were interviewed also displayed very negative or prejudicial views about people with ME/CFS. CS has written to members of the FORWARD ME Group to ask for a discussion on nurse education to be placed on the Agenda for the next meeting. The MEA has approached the Royal College of Nursing about ME/CFS education in the past and the results of this study indicate that we need to do so again. The full paper can be accessed via the news section (January 2009 archive) of the MEA website.

SCOTTISH CLINICAL GUIDELINES

ED reported on the current state of progress relating to the development of clinical guidance for doctors in Scotland – a document that is partly being based on the content of the MEA purple booklet for health professionals: ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues – and the Public Health Needs Assessment. The timescale for both projects has had to be re-organised with redrafted documents relating to both initiatives coming out in February for further stakeholder consultation. The aim is to achieve publication during ME Awareness Week in May.

NHS DIRECT

TB reported on a meeting he had attended on January 20th of the NHS Direct Access Issues Group at NHS Direct HQ, where the possibility of MEA involvement in future work on chronic and long term conditions was mentioned. TB has been invited to give a presentation to the group at their next meeting in April. We are also working with NHS Choices on a video about ME/CFS.

MEA ANNUAL MEDICAL MEETING

Trustees discussed arrangements for the 2009 Annual Medical Meeting. CS is going to contact local groups to see if anyone would like to co-operate with us in the way that the Colchester Group did for the 2008 meeting.

OTHER ME/CFS MEETINGS

Royal Society of Medicine CS reported on arrangements for the patient meeting in the ‘Medicine and ME’ series that will be held at the Royal Society of Medicine on Saturday 11 July. More information on this meeting, including how to apply to attend, can be found in the February issue of ME Essential magazine.

Invest in ME Conference Trustees agreed to both TB and CS attending this conference in May. We are also going to ask the organisers if the MEA can have a display stand at the conference.

MEA MANAGEMENT QUESTIONNAIRE

TB updated trustees on the analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of public opinion about management issues that has ever been undertaken here in the UK, possibly in the world. A comprehensive summary of the results will appear in the February issue of ME Essential magazine and it was agreed to start work on the preparation of a more substantial report which summarises and comments on the results. All of the relevant patient feedback will be passed to the APPG Inquiry into NHS Services.

MEA LITERATURE

A new information leaflet on PHI/permanent health insurance will shortly be made available.

MEA literature can be obtained using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the 8 page order form insert in the February issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.

MEA WEBSITE

The new regular on-line survey feature has proved to be very popular. So far, we have surveyed public opinion on reactions to flu vaccination (November); the NICE guideline on ME/CFS (December) and post-mortem research (February). Trustees considered various options for future questions. The February survey will be allow people to comment on how satisffied they are with the NHS management of their ME/CFS. Results from current and past on-line surveys can be found on the MEA website.

It was agreed to update the section on alternative and complementary therapies.

ME CONNECT

Trustees discussed whether ME Connect Helpline could also be linked in to NHS services and given publicity by the ME/CFS clinics.

ME ESSENTIAL MAGAZINE

TB reported on the content of the February issue of ME Essential. This will be sent out to members towards the end of the month. It was agreed to produce a survey form for people to comment on the content of the magazine – in particular the not always easy task of achieving the right balance between serious news and medical information and ‘lighter’ human interest features.

DATE OF NEXT MEETING

Provisionally fixed for Tuesday 17 March 2009

Summary prepared by Dr Charles Shepherd
MEA trustee

ADDENDUM

Further information on new MEA funded research into muscle energy metabolism:

Professor Julia Newton and colleagues at the University of Newcastle have been investigating the role of autonomic system dysfunction in ME/CFS and several papers from her research group relating to these findings have now been published. Professor Newton has also been looking at possible explanations for the sometimes quite disabling fatigue that is reported by people with primary biliary cirrhosis. The main emphasis of the new study being funded by the ME Association’s Ramsay Research Fund will be to look at whether there is a peripheral (ie muscular) component to exercise-induced fatigue in ME/CFS by examining how skeletal muscle produces lactic acid during exercise and then removes the acid during the recovery phase. The proposed study will take forward findings from small studies that have already examined this aspect of muscle function. Some of these studies indicate that there is a defect in muscle energy metabolism/production, possibly due to mitochondrial dysfunction, that cannot be explained by the deconditioning/inactivity model – at least in a sub-group of people with ME/CFS.

MEA website

ENDS

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