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

Media coverage 1: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients

Media coverage round up 1: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients  (XMRV PNAS paper)

Shortlink: http://wp.me/p5foE-32B

For Newswire; Abstract; Full paper; Supporting information; Editorial; Commentary go here:

Study: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients finally published

Updates will be added to the top of this list:

International media coverage:

 

http://blogs.wsj.com/health/2010/08/25/does-x-the-virus-that-is-mark-the-spot-in-chronic-fatigue-syndrome/

Does X (the Virus, That Is) Mark the Spot in Chronic Fatigue Syndrome?

By Amy Dockser Marcus

When it comes to chronic fatigue syndrome, researchers are starting to ask: What’s the role of the virus known as “X”?

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http://www.newscientist.com/article/dn19361-virus-link-with-chronic-fatigue-syndrome-resurfaces.html  

New Scientist  |  25 August 2010

Virus link with chronic fatigue syndrome resurfaces

By Andy Coghlan

“The discovery of mouse virus fragments in cells from people with chronic fatigue syndrome has reinforced earlier claims that they may cause the condition.”

—————–

http://www.smh.com.au/lifestyle/wellbeing/virus-link-to-chronic-fatigue-gives-hope-to-sufferers-seeking-a-cure-20100824-13qgb.html

Syndey Morning Herald
Virus link to chronic fatigue gives hope to sufferers seeking a cure August 25, 2010

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http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives
FOUR Viruses? The Alter XMRV Paper Arrives at Phoenix Rising

By Cort Johnson for Phoenix Rising

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Links collated by Jean Harrison via Co-Cure Listserv mailing list:

http://www.cbsnews.com/8301-504763_162-20014504-10391704.html
http://wellness.blogs.time.com/2010/08/24/study-links-chronic-fatigue-to-mouse-virus/
http://www.smh.com.au/lifestyle/wellbeing/virus-link-to-chronic-fatigue-gives-hope-to-sufferers-seeking-a-cure-20100824-13qgb.html
http://www.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/?hpt=T2
http://www.psychologytoday.com/blog/complementary-medicine/201008/xmrv-virus-confirmed-in-cfs
http://www.webmd.com/chronic-fatigue-syndrome/news/20100823/virus-linked-to-chronic-fatigue-syndrome
http://www.abc.net.au/science/articles/2010/08/24/2991897.htm
http://www.latimes.com/health/la-sci-fatigue-virus-20100824,0,127566.story
http://www.businessweek.com/lifestyle/content/healthday/642400.html?chan=rss_topStories_ssi_5
http://www.npr.org/blogs/health/2010/08/23/129383111/scientists-find-traces-of-virus-in-chronic-fatigue-patients
http://www.eht-forum.org/news.html?fileId=news100824071904&from=home&id=0
http://blogs.nature.com/news/thegreatbeyond/2010/08/delayed_chronic_fatigue_syndro.html
http://www.nytimes.com/2010/08/24/health/research/24fatigue.html
http://www.mdnews.com/news/hd/2010_35/hd_642389
http://www.hc2d.co.uk/content.php?contentId=15883

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Wall Street Journal Blogs

http://blogs.wsj.com/health/2010/08/24/pnas-paper-on-virus-chronic-fatigue-syndrome-link-has-its-own-story/

Health Blog
WSJ’s blog on health and the business of health.

By Amy Dockser Marcus

August 24, 2010, 1:55 PM ET.

PNAS Paper on Virus-Chronic Fatigue Syndrome Link Has Its Own Story

The much-awaited PNAS paper published yesterday (and reported in today’s WSJ) about the discovery of a family of retroviruses in patients with chronic fatigue syndrome came with a backstory — its own editorial explaining the publication process.

Here’s why that was necessary. Earlier in the summer, the WSJ reported that the completed paper, by a team of researchers from the NIH, FDA and Harvard Medical School, contradicted findings of a similar study done by CDC researchers and was being held until the discrepancy could be sussed out.

Read on

—————–

US patient organisations

http://www.cfids.org/mlv/caa-response-082310.asp

Another Turn of the Retrovirus Kaleidoscope

By K. Kimberly McCleary  |  23 August 2010

—————–

Podcasts

Listen to the NIH telebriefing on the NIH/FDA study published in The Proceedings of the National Academy of Sciences (PNAS) 23 August 2010:

Part 1: http://www.mediafire.com/?6phy8fyxxj4mhy9

Part 2: http://www.mediafire.com/?40esxfnjflnyzhz  

—————–

Whittemore Peterson Institute Press release in response to paper

http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf

—————–

http://www.businessweek.com/news/2010-08-23/chronic-fatigue-linked-to-mouse-virus-in-u-s-government-study.html

Business Week
Chronic Fatigue Linked to Mouse Virus in U.S. Government Study

—————–

http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=1&hp

New York Times
Study Links Chronic Fatigue to Virus Class

—————–

http://voices.washingtonpost.com/checkup/2010/08/new_evidence_virus_may_cause_c.html?hpid=topnews

Washinton Post
New evidence that virus may cause chronic fatigue

—————–

http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html

Second Paper Supports Viral Link to Chronic Fatigue Syndrome
by Martin Enserink on August 23, 2010 4:02 PM

—————–

http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100262656

More Evidence Virus Plays Role in Chronic Fatigue Syndrome
Condition afflicts a million Americans, but cause, treatments remain elusive
By Jenifer Goodwin HealthDay Reporter

—————–

http://www.the-scientist.com/blog/display/57628/

Q&A: Why I delayed XMRV paper, The Scientist – Magazine of the Life Sciences

—————–

http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=googlenews_wsj

Wall Street Journal

 

Video

http://www.youtube.com/watch?v=9ZEwQUg7o6I&feature=channel

Dr Judy Mikovits on paper on YouTube

 

Blogs

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

CFS Central Blog write-up by journalist Mindy Kitei

Dr Esther Crawley discusses XMRV and WPI, March 2010

Dr Esther Crawley discusses XMRV and Whittemore Peterson Institute (WPI), March 2010

Part transcript: Presentation to the Dorset CFS/ME Society Annual Medical Lecture: section on XMRV.

Shortlink: http://wp.me/p5foE-31g

XMRV: Whittemore Peterson Institute (WPI)  Opens on campus of University of Nevada (Parts 1 and 2)

Sam Shad for Nevada Newsmakers

Part 1

Part 2

 

Update: This transcript was revised on 20 August and supersedes previous versions.

May be reposted if posted in full, unedited and a link to source is given.

Dorset CFS/ME Society
Annual Medical Lecture

27th March 2010

The Future of Research in CFS/ME

Esther Crawley

Intro:

It’s a great pleasure to be here, everybody, and I’m really glad actually that my talk actually fits in very nicely with what William’s just said – Phew!

I’m going to be talking a lot about the collaborative research and the first half of my talk actually was given to the MRC Working Group at the end of last year. So you’ll actually see what we were talking about where the MRC gathered lots and lots of researchers together to discuss a way forward with chronic fatigue [sic] and I did the talk on Epidemiology.

[…]

[Slide]

I couldn’t resist talking about XMRV. I think we have to know about what’s actually happened and I will discuss that as well and what the implications are.

[…]

[Rest of intro and presentation skipped.]

Approx 27 mins in from start of presentation:

[Slide]

XMRV. OK, so in the next, last, remaining bit of the talk I want to summarise what’s happened about the XMRV story for you. I think it’s really important that we’re all informed about it.

Many of you will have woken up and read this story, in fact I knew about it 24 hours before it was about to break – “Has science found the cause of chronic fatigue syndrome?” – we’re all very excited and hopeful this might give us something we can treat. Great.

[Slide]

Don’t you think this is the most beautiful picture? That’s the XMRV virus. I don’t know how they get those colours on them – very beautiful.

Now this is the Centre that reported it. Do any of you notice anything about that picture? XXXX you’re not allowed to say.

Sorry?

Member of the audience: Sunshiny?

EC: Sunshiny, yeah. It’s in Reno, yeah, yeah. Anything else? It’s a bit far away.

Has anyone looked at the website? Isn’t that interesting? That doesn’t exist. That’s a fake picture – it’s what they would like to exist, when you donate money, when you go on the website. I thought everybody knew that! Yeah, sorry? This is Dorset.

OK. The Centre isn’t built. That’s their picture of what they would like to build and when you go on the website it has “Please donate.”

OK. What do the Lombardi group originally show?

[Slide]

OK. This is a complicated slide. I’m just going to take you through bit by bit because it’s really important when we look at all the research evidence.

OK. The gag sequences – the DNA that’s associated with these particular type of viruses – so they use PCR. PCR is basically when you get a tiny bit of DNA and you multiply and multiply and multiply and then you run it on a gel and see if it’s there. And what they found, and you’ll all remember these figures, I’m sure, is that they found it in 68 out of 100 [Ed: 101 on slide] chronic fatigue [sic] patients and 8 out of 218 controls.

They then looked in the cells and they found the protein in the cells and then they looked at whether it’s infectious. Now I have to say, this bit made me slightly worried – so they looked to see whether this virus could infect other cells within the lab and they showed that it’s infectious and they also looked at what happened if you put the virus with other cells in terms of did it develop an immune response?

[Slide]

And these are some of the pictures they showed. So when you multiply out the DNA, you then run it on a gel and you tag it with a thing that shines – I did my PhD doing this, I can tell you all sorts of awful stories of gels breaking and all sorts of other things going wrong. But these are the chronic fatigue [sic] patients – you see all these lines, here? That’s that gag sequence – here and here – that’s the end of the line and these are the controls.

Then they looked at the expression in cells and you could see it. And then they looked at the infection and this is the infection happening here.

Now this paper went out for review by virologists – not by clinicians and that’s a very important point and it was passed and it was published.

[Slide]

And this is what they said on their website and I think this is kind of interesting: “

“We have detected the retroviral infection XMRV is greater than 95%…”

Where did the 95% come from? Did anybody notice the 95%? Can anybody remember the percentage they found it in? Yeah, 66% [sic], slightly less.

OK. Says on the website “…95%…The current [working] hypothesis is that [XMRV]…” infects these cells…and I found this absolutely terrifying…viral chronic fatigue syndrome “causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections”.

OK. Have they shown any of that? Have they shown increased risk of opportunist infections? Have they shown a defect in the immune system that’s actually going to affect someone rather than just in a cell lab plate?

[Slide]

No. But that’s what’s on their website. That’s what they say they’ve found. So what happens? The research community runs to replicate the work.

[Slide]

OK. And you’ll all remember when this first paper came out “Failure to replicate…” – this is an English paper [Ed: the McClure PLoS ONE paper]. Well obviously this is wrong because they didn’t use the same techniques and it wasn’t the same patient group.

[Slide]

So in this particular experiment, they actually characterised the patients.

Now on the original paper, they say that the chronic fatigue [sic] patients were well-characterised but they do not describe them at all. We don’t know how many were girls – we don’t know how many…girls! – I’m such a paediatrician – we don’t know how many were female. We don’t know how long they had had the illness for. We don’t know who diagnosed them and we don’t know whether they had any blood tests to exclude other illnesses.

In this one, [Ed: the McClure paper], they actually had all the exclusion stuff excluded, they then used the DNA sequence. They had positive and negative controls. Why do you need positive and negative controls? Yes, so you’re worried that maybe when you do PCR it’ll pick up…you’ve all seen crime scenes, right? So PCR will pick up one bit of DNA, so if you’ve got a bit of DNA in your solution or something like that, you must have negative controls because you need to be certain that the DNA has come from the samples – not from your lab solutions.

Yes. OK. And you must have positive controls to make sure your experiments work.

They used a virus free laboratory. So they did it in a laboratory that had not had the virus in the past and they blinded the person doing the PCR. Does everyone know about “blinding”? So what they did, was that the person that was reading the gels didn’t know whether they were patients or not, because it’s really easy on those gels to over-interpret what you see.

OK and their results, you might all remember, they didn’t find any out of 186 patients – none of them had chronic fatigue [Ed: corrects herself] – XMRV.

[Slide]

And then a few days later, this one came out. This one had several people from England – Jonathan Kerr and so on. And they’re very open – they said, John Gow – these are all people that we’re collaborating with – they said we wanted to find chronic fatigue syndrome – we wanted to find the XMRV virus. We wanted to – we looked hard.

Now the criticism of the previous paper was that they hadn’t used the same techniques, so in this one they used the same techniques. They had 170 patients, 395 controls. You can already see the sample size is much bigger and they did both PCR and looked at the serology.

They found none in 299 samples of patients – had chronic fatigue [Ed: corrects herself] – had XMRV. And although they found what’s called “neutralising activity” they looked at this further and suggested that the immune response was actually related to other viruses and not to the XMRV.

[Slide]

And then this was published a couple of weeks later [Ed: BMJ paper] – from the Dutch group. Again, a very well described Dutch cohort – smaller, 76 patients 69 controls. And what they did, they actually went completely overboard with trying to find it. They used very, very sensitive techniques that should have detected – if any was there at all, they should have detected it – much more sensitive than the original paper and they looked at a variety of DNA and they tried several times to improve the sensitivity – all samples were negative for XMRV.

So what do you think’s going on?

Member of the audience: Publicity.

EC: Publicity…

….I have actually given a clue.

Member of the audience: Money?

EC: Sorry. Money…money…money…

Member of the audience: XXXX wants to tell us.

EC: OK, go on, XXXX…

EC’s young son (in front row): Did they all do it from one place?

[Slide]

EC: Ye…es! The first group – actually, the question is, was the first group chronic fatigue syndrome? And eventually, when they were asked, they told the research community that, this is in Lisbon, at the end of last year, that all the samples came from an outbreak of chronic fatigue syndrome in one village in Lake Tahoe.

And when you actually go and have a look at all the research data around that outbreak, everybody at that time thought it was a viral infection. And nobody could find the virus.

So most of us think that that was probably the issue – it was probably a viral outbreak that has certainly caused chronic fatigue syndrome but is not necessarily going to be relevant for us here in the UK.

[Slide]

It’s not clear about the PCR operator, the person that looks – it’s not clear from the paper, whether they were blinded. There might be issues about whether you work in a virus free lab, remember they showed that this was infectious.

And there’s a big question here [Ed: indicates on slide] – this XMRV virus was initially described with prostate cancer and the prostate research community has shown this in prostate cancer in two studies in the USA. These are different labs in different studies but no association in Europe.

So maybe this is a virus that’s important in America but not important in this country – it’s not clear.

And I think this is of interest. Within a week of their paper being published they produced a test for the XMRV virus at $650 a test. [Ed: Slide reads, at point 4: Conflict of interest?].

And if I was developing a test, I would declare that as a conflict of interest on the paper – “I’m developing a test for this.” Then people can make up their mind about whether it has affected the results. We don’t know, it wasn’t declared they’d produced a test.

[Slide]

Why are patients so upset?

OK, well I don’t know and you’ll probably be able to tell me more than I can tell. But I think when they first publicised this they went on everything, lots and lots of American television.

[Slide]

[Reads from slide]

“Vindication” they said, “This “[new] report has intrigued scientists, been seen as vindication by some parents [Ed: corrects herself] – patients and inspired hope for treatment.”

Well you know, the history of this condition is that patients have not been listened to, they’ve been dismissed, they’ve had a terrible time and if a virus comes along as a cause, that is going to be seen as a vindication – I can understand that.

And it’s very disappointing, isn’t it, the negative replications?

[Slide]

But I do think that there’s been other stuff that’s been going on that I have particular difficulties with. When I prepared this talk for an infectious diseases conference, I went through and I just got some quotes off the web from the research team.

[Slide]

Look at this:

[Reads from slide]

“Here you’ve got your immune system working well and the virus and the immune system are coexisting just fine and then some other bug, whether it be Lyme, a flu, anything gets you…and then you’ve just tipped the scale to where your immune system can’t handle [XMRV] or anything, and every day you’re seeing new infections.”

[Slide]

And then at one point, rumour has it (and I couldn’t find any evidence for this) that they started to suggest that patients with chronic fatigue syndrome should have anti-retrovirals, ie HIV drugs.

They’ve taken that back, and this is all I could find:

[Slide]

[Reads from slide quoting Dr Judy Mikovits; the “she says” refers to Dr Mikovits]:

“While it’s not advisable to take highly toxic anti-retrovirals [without tests confirming effectiveness], she says some available therapies may help, including: immune modulators; anti-inflammatories, because inflammation activates XMRV, things that improve natural killer cell function; medications that help [level progesterone levels, because progesterone up-regulates XMRV in lab tests]; avoiding stress.”

It appears – and this really upset me, OK. All of their studies are in adults. OK, all in adults. And then they say:

[Reads from slide]

“Early infection in children can lead to more severe disease later on.”

Early detection?

Oh, that’ll be that test that they produced for $605 [sic] a pop.

[Reads from slide]

“and intervention important to keep viral loads from getting high.”

I find that really frightening. If I had a child with chronic fatigue syndrome and I read that on the web, the first thing I’d do, I’d go and buy the test, and the second thing I’d be doing would be phoning an infectious disease doctor which is what’s happened and ask about anti-retrovirals for my child, having read that.

So I do feel as researchers, we do take some responsibility for saying “This is a first paper! Let’s wait and see what happens.”

You know, I think it’s really interesting, it look likes they did find something in a group of patients and we haven’t found it here. That’s really interesting and is deserving of more research. But let’s just say, it’s interesting at the moment, rather than all of this speculation, which I think can be very harmful for patients.

[Slide]

The future for infection

OK, I gather that this may well already have happened, not been published, the way forward in these things is to replicate the studies in both labs and try and look at why there are differences.

I think it may be important for a subtype of chronic fatigue syndrome.

I very much doubt it effects all of them, as they claim.

It doesn’t appear to be important in this country.

And there’s actually very beautiful research which we need to understand more, looking at the relationship between genetics, infection and other things like mood.

OK. After a whistle-stop tour of most research on chronic fatigue syndrome, this is now my summary slide – this is what I’ve talked about.

[Slide]

There are two arms for research in chronic fatigue syndrome and I don’t believe that one replaces the other. The funding for both arms is different in this country and they both need to be done together and both influence the other.

[Slide]

The first is important for providing services and treatment:

We need to know more about how common this is.

We need to understand who it affects.

And we need to know about the different types of chronic fatigue syndrome.

We need to understand how the different types influence treatment.

We need to know much, much more about the impact of this devastating condition on patients and carers.

The second one is that we need to know more about the aetiology, about the causes of this condition and in my view, the fastest way forward is to use the large, very large sample sizes that we have available in this country to conduct rigorous genome-wide association studies and I’m not so certain about the role of infection but I do think there is an interesting story with XMRV that we need to get to the bottom of.

And it just remains for me to thank my funders – I’m funded by the National Institute of Health Research and my Clinician Scientists Fellowship, the Linbury Trust, Action for M.E. and I’m the Medical Adviser for AYME.

[Slide]

And this is where I work.

Thank you very much.

——-

There was a Q and A session which included questions about the RNHRD NHS FT/University of Bristol Lightning Process pilot.

US Federal Chronic Fatigue Syndrome Advisory Committee: Minutes of October meeting

The Minutes of the October 2009 meeting of the US Federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) are now available

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

CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE (CFSAC)

http://www.hhs.gov/advcomcfs/

Meeting

Thursday, October 29, 2009
9:00 a.m. to 5:00 p.m.

Friday, October 30, 2009
9:00 a.m. to 4:00 p.m.

Room 800, Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201

The document minutes the proceedings of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting held on October 29-30, 2009.

Download PDF version: http://tinyurl.com/yjarxlf or open here on ME agenda: CFSAC meeting 29.10.09

HTML version: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac102909min.html

 

Access a podcast video of entire meeting proceedings for Day One and Day Two at:

Day One: http://videocast.nih.gov/Summary.asp?File=15408

Day Two: http://videocast.nih.gov/Summary.asp?File=15409

[Video transmission has Auto Subtitles. RealPlayer required]

Action for M.E. Election manifesto

Action for M.E. Election manifesto

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

Note: This site operates independently of any patient organisation. The publishing of material on this site does not imply endorsement or recommendation.

Action for M.E. News

http://www.afme.org.uk/news.asp?newsid=761

Election manifesto video launch
23 February 2010

M.E. manifesto video goes live

Today Sir Peter Spencer, Chief Executive, Action for M.E., launches a video urging people with M.E. and their family and friends to use our Election Manifesto for M.E. to lobby local Parliamentary candidates.

Tristana Rodriguez tristana.rodriguez@afme.org.uk, our Policy Officer, is keen to hear from anyone who forwards the manifesto to their MP, or potential MP, and receives a response.

The manifesto has been produced in partnership with the Association of Young People with M.E. (AYME) and in consultation with people who have the illness.

Initial responses to the document have already been received from the three main political parties. Action for M.E. has written back, calling for greater commitment to the issues which matter to people with M.E.

 

Parties respond to M.E. manifesto
19 February 2010

http://www.afme.org.uk/news.asp?newsid=757

All three main political parties have answered calls by Action for M.E. and the Association of Young People with M.E. (AYME) to outline their election pledges for people with M.E.

Responses to our Election manifesto for M.E. have now been received from Labour, the Conservatives and Liberal Democrats.

Labour has focused on health and welfare, increasing Access to Work and reassessing Incapacity Benefit or Income Support claimants to move them on to Employment and Support Allowance.

The Tories lead on speeding up drugs appraisal procedures, before moving on to single health and social care assessments and the introduction of a single integrated back-to-work programme for everyone on out-of-work benefits.

The Liberal Democrats, who are still working on their election manifesto, concentrate on investing in support for children, especially in terms of education.

Commenting on the responses, Action for M.E.’s CEO, Sir Peter Spencer says:

“I would like to thank the three parties for providing their responses to the manifesto for M.E. but I am very disappointed to see that they have each failed to address many of the key issues.

“We understand that certain policies may still be in development which may explain why our manifesto priorities have not been given the explicit emphasis we would expect. Perhaps these omissions will be resolved as the party policies develop.

“To this end, we will continue to lobby at a national level, and we would urge supporters of the manifesto to do the same with their local Parliamentary candidates. We want to see the next Parliament make a genuine and powerful commitment to tackle the huge problems faced by people with M.E. and their families and to remove the inequalities which have been overlooked for far too long.”

Mary-Jane Willows, CEO of AYME, comments:

“Whilst I am pleased that the responses were made they are all sadly lacking in content and substance. They still fail to acknowledge the huge shift in awareness and services required if the needs of children and young people with M.E. are going to be fully met.

“Individuals with M.E., their carers, parents and partners now need to take the manifesto to lobby all their Parliamentary candidates who then can’t fail to realise the scale of the issues this marginalised patient population is faced with in health, education, social care, benefits and employment.

“Ignoring this significant patient population must end now and be replaced with a clear and robust strategy that will increase awareness and support across the board.”

The charities are calling on local support groups, individuals with M.E., their carers, friends and others to join us in lobbying parliamentary candidates to sign up to the pledges in our election manifesto for M.E.

For free copies of the manifesto to send to your MP or local Parliamentary candidate – plus a sample campaign letter, please contact our Policy Officer, Tristana Rodriguez tristana.rodriguez@afme.org.uk tel: 0117 9301325 or Katie James katie@ayme.org.uk, from AYME, tel: 01908 379737, stating how many copies you need.

Documents:

Video
Election Manifesto
Sample Campaign Letter

Responses from three main political parties

Labour Response
Conservative Response
Liberal Democrat Response

Gilderdale ME legal case: Media coverage 26 January

Gilderdale ME legal case: Media coverage 26 January

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

It is understood that the case will feature in Panorama on Monday 01 February 2010.

freefoto
Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and are archived in Categories under Gilderdale case

ME agenda is not able to respond to enquiries in connection with the case from members of the public or the media.

Independent  |  26 January 2010

Prosecuting suicide-death mother Kay Gilderdale ‘in public interest’

 

Times  |  26 January 2010

The entire front page of today’s Times is devoted to the Gilderdale case with a double page spread on pages 7 and 8.

Video on this Times page

Jeremy Vine  Radio 2

BBC Northampton

Humberside Radio

Times  |  26 January 2010

http://www.timesonline.co.uk/tol/news/uk/crime/article7002405.ece

26 January 2010

Devoted mother Kay Gilderdale should never have been prosecuted, says judge

A High Court judge has criticised the Director of Public Prosecutions for personally pursuing an attempted murder charge against a “selfless and devoted” mother who helped her acutely ill daughter fulfil her wish to die.

As Kay Gilderdale, pictured right with her daughter, walked free from court yesterday after being cleared unanimously of attempted murder, the trial judge, Mr Justice Bean, repeatedly questioned whether the emotive case had been in the public interest.

Last night, the 55-year-old mother of two spoke for the first time of how her heart had been “ripped apart” between her maternal instinct to save her daughter Lynn, 31, and respect her repeated pleas for help to end 17 years of suffering since she contracted ME.

The former nurse had admitted assisting her daughter’s suicide by giving her 420mg of morphine to inject herself in December 2008.

Related Links

‘I’ve had enough of being in so much pain’
New calls to clarify assisted dying law
ME: a debilitating illness with no known cure

She was charged with attempted murder after it emerged that she had given Miss Gilderdale medicine to ease her suffering in her final hours.

Only now can it be revealed that during initial legal arguments Judge Richard Brown, who presided over the case before trial, invited the CPS to drop the attempted murder charge.

Referring to her guilty plea to assisted suicide, he asked: “Wouldn’t it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo jumbo?”

The case was reviewed by Keir Starmer, the DPP, after he published guidelines on assisted suicide last September, but the attempted murder charge was not dropped.

Mr Justice Bean’s decision to question Mr Starmer’s role and that of the Crown Prosecution Service will reignite the debate on mercy killings.

The judge thanked the jury for their “common sense, decency and humanity” in choosing to acquit Mrs Gilderdale. Sources close to the family suggested that her trial was used as a test case to sound out public opinion. The CPS remained adamant that its decision to pursue the case was right, saying that the law did not allow mercy killings.

Mrs Gilderdale did not give evidence during the trial. Afterwards, she described the torment of trying to come to terms with a loved one’s repeated pleas to be allowed to die.

“You’re torn apart because you have one part of you wanting to respect your daughter’s wishes and understanding everything they have been through, and you have got your heart being ripped out at the same time because all you want to do is to get them better and keep them alive,” Mrs Gilderdale told the BBC Panorama programme.

“It has been the hardest thing I have ever experienced and will ever experience in my whole life, no matter what happens to me. There will be nothing that will compare to the pain and heartbreak of watching my beautiful daughter leave this world.”

The public gallery at Lewes Crown Court erupted into applause as the jury unanimously cleared Mrs Gilderdale of attempted murder after deliberating for less than two hours following a week-long trial.

Before sentencing her for assisting a suicide, the judge asked who decided to continue with the attempted murder charge. Sally Howes, QC, for the prosecution, replied: “Ultimately the decision was taken by the DPP in consultation in November last year.”

Asked whether it was thought to be in the public interest, she replied: “It was thought at the highest level that this was a case that should be canvassed before the jury.”

The judge released Mrs Gilderdale with a one-year conditional discharge. She replied quietly: “Thank you. Thank you very much.”

Outside the court, Stephen Gilderdale 35, said that he was proud of his mother for her “selfless actions”.

The jury had been visibly moved by the account of two parents struggling to come to terms with the realisation that their daughter had lost the will to fight a debilitating condition.

Richard Gilderdale told how his daughter wanted to end her “wretched existence”. On December 2, 2008, he had sent his usual evening text messages to his ex-wife and daughter to see how a new treatment was going. In his final message to his daughter, he said: “Good night. Sleep well. I love you.”

In the early hours of the following day, Miss Gilderdale summoned her mother to her bedroom and pleaded with her to help her kill herself.

http://www.timesonline.co.uk/tol/life_and_style/health/article7002306.ece

Lynn Gilderdale’s moving account of why she decided to end her life

OK guys, I have something really important to say. I want to talk about something extremely private and personal to share with you, my closest friends. After many years of serious deliberation, I have pretty much come to a huge decision. I hope you will try to understand my reasons for this decision and even if you don’t personally agree with it I hope you won’t judge me too harshly.

I don’t know how to begin. I am just going to come out with it. Here goes, deep breaths. Basically I think some of you have known for a while I have had enough of this miserable excuse for a life, of merely semi-existing for the last 16½ years. I have had enough and I want to die. This is no whim and certainly not just because of the reactive depression diagnosed a few months ago. I am no longer on antidepressants because they weren’t doing anything for me.

I really, really, really want to die and have had enough of being so sick and in so much pain every second of everyday and, basically, one serious health crisis after another. I am tired, so very, very tired and I just don’t think I can keep hanging on for that elusive illness-free existence.

I can’t keep hanging for that ever diminishing non-existent hope that one day I will be well again. This is something I have thought long and hard about, and more than once about. I’m sure it’s what I want. I have discussed and continued to discuss with my parents at great length. Although they obviously desperately don’t want me to go, they can see I have just had enough and understand why I can’t keep hanging on for much longer.

Related Links

Mother not guilty of attempt to murder ME daughter
ME: a debilitating illness with no known cure
ME mother ‘should never have been prosecuted’

A few months ago, some pretty extreme situations arose. Something happened here and I was finally tipped over the edge. I tried to end my life by sticking a syringe straight down into my veins and simultaneously a syringe full of air. This was not a desperate cry for help, it was a serious attempt to end my life. It should have been enough to kill a grown man. No, it didn’t finish me off. Eventually, I have become tolerant to morphine after being on it for years.

All the overdose did was render me unconscious for a few hours until I finally felt Dad shaking me awake.

That was really the first time my parents knew how depressed I was. I had managed to hide it by using my time-worn, fake-happy face, when they are around. I begged my parents not to tell the doctor what I had done. But, I was put on antidepressants.

Drugs have stopped me from crying all the time, but it hasn’t stopped me from my desire not be on this planet any more. Nothing can change my mind. I have since promised I won’t try to kill myself again in secret.

Injecting morphine is the only reliable suicide method I have access to myself. There’s no other possible way to do it on my own.

Dad, he has always hated me talking about it in the past. He was quite heartbroken. He said: “I understand. But what would I do without my best mate?” This made me sob even harder than I already had.

After talking to me for ages, they both were extremely reluctant but agreed that if something life-threatening did happen to me they promised that they would inform the doctors and nurses that I didn’t want to be revived in any circumstances. I refuse to go back for more treatment.

I know there is a slim chance that I could fully recover and live a relatively normal life but even if I wake up tomorrow, I still won’t be able to live the life I dreamt about living.

My ovaries have packed up — I won’t be able to have children, my all time favourite wish.

I am already 31 years old. By the time I have found the man I want to have children with I will be far past the age. I cannot see myself ever being well enough to do any of this.

Also my bones are so osteoporotic that every cough and sneeze could cause a fracture. How can I live the life I have dreamed of; swimming, sailing, running, cycling. The kind of life I had before it was taken away from me at the age of 14.

My body is tired and my spirit is broken. I have had enough. Can you understand that? I hope you can, I really, really do.

In addition to not wanting any life-saving treatment, if I am ever presented with an opportunity to leave this world, I have to admit I will grab it with both hands.

I understand people think I am just depressed or worse — suicide is far from easy in my opinion and recent experience — or they think it is ridiculous of thinking of suicide when there is still a chance I could recover.

I am also painfully aware that I have a couple of special friends with their own terrible diseases.

I was 30 last year, the desire to leave all this pain and sadness behind me has nothing but increased. I want to die so, so much. Mum and I have probably spent hours on and off discussing everything, despite her doing her best to make me see things differently. My resolve to leave this life has done nothing but intensify.

I am sorry. I know this may be a shock to some of you. Try to put yourself in my situation. Read all the newspaper articles online. This is only a tiny part of what I have been through in the past 16 years.

To see what every second of life in intense pain, feeling permanently and extremely ill, not just lying in a bed resting but 100 per cent reliance on others to care for my basic needs. I have survived because of tubes of medicine, pumps and drugs. Without all this modern technology I wouldn’t be here.

Imagine you lived in one small room, in one single bed for 16 years since the age of 14. Imagine being 30 years old and never having kissed someone properly. Yep, I am that pathetic 30-year-old virgin that everyone ridicules.

Imagine having the painful bones of a 100-year-old woman unable to move without risking a fracture. Imagine being unable to get the spinning thoughts out of your head, other than by slowly typing e-mails.

Imagine not being able to turn yourself over in bed or move your legs.

Imagine having to use a bed pan lying down and having your mother wipe your bum for you.

Imagine having never been in a pub or club at 31 years old. Imagine never having been able to fulfil one thing above all else — that thing that should be a right for all young women, the right to have a young child. I know some women are unable to, but it doesn’t stop my heart from aching and the need to hold my own baby.

Imagine being imprisoned inside the miserable existence that is your life.

I don’t have to imagine of that. My body and mind is broken. I am so desperate to end the never-ending carousel of pain and sickness and suffering. I love my family. I have nothing left and I am spent.

How are Mum and Dad coping with all this? They are utterly, utterly heartbroken, naturally. Although I fear they won’t get over losing me and they don’t want me to go, and despite all the pain they must be in every time I discuss this whole thing, they must understand why I’ve had enough of this life and can’t keep hanging on. They both said they would either die or feel the same. I am so lucky to have incredible parents.

I desperately want to die. Mum and Dad know I have made up my mind.

They have made sure repeatedly that this is what I truly want. And now I’m not going to resist temptation if a way of ending my life falls into my lap.

Even though I can’t imagine how hard this must be for them, obviously they won’t want to lose me but they can’t bear for me to suffer any more than I have — that’s true unconditional love. I will never be able to thank them for putting my needs above theirs. However sad it is, it’s going to be my time to go very soon.

November 2008: I am afraid I can’t lie. I still do crave suicide with every fibre of my being. I promised my parents that I won’t attempt to do it in secret again. If the chance falls into my lap I will grab it with both hands. Mum regularly goes through everything with me. I never waver, I just become more and more sure as time passes. I have always stated that if I was unable to make a decision myself the power goes jointly to my parents. I trust them implicitly with my life and death. I know they won’t do the selfish thing in keeping me here purely for themselves.

http://business.timesonline.co.uk/tol/business/law/article7002006.ece

Gilderdale case prompts fresh calls to clarify the law on assisted dying

Frances Gibb, Legal Editor

One devoted mother who helps her sick daughter to end her life with tablets and morphine walks free from court with a suspended sentence.

Another is jailed for murder, to serve a minimum of nine years, after injecting her brain-damaged son with a lethal dose of heroin.

The two contrasting cases have reignited the debate over “right to die” and whether those who assist a loved one to end their suffering should be subject to criminal law.

Both involved a loving parent who could not bear to see a child suffer. Both, therefore, were acts of mercy. But there were key differences: Frances Inglis’s son, Thomas, 22, who had brain damage, had never indicated an intention to die. His mother believed him to be in pain and could not accept an encouraging medical prognosis.

Kay Gilderdale’s daughter, Lynn, 31, had attempted suicide. She had considered it over time and contemplated going to the Dignitas clinic in Switzerland. When a first attempt at suicide failed, her mother set about trying to help her to end her life.

Last July Keir Starmer, QC, Director of Public Prosecutions, outlined 16 “public interest factors” in favour of a prosecution and 13 factors against taking legal action in order to bring clarity to existing assisted suicide legislation.

Mrs Gilderdale was charged not just with attempted assisted suicide but also with attempted murder. A spokesman for the Crown Prosecution Service said that this was because the evidence suggested that her daughter may not have died from an assisted suicide. “It was not clear cut: there was a sequence of events and the toxicologist could not prove which of these stages resulted in death,” he said.

The case exposed the acute difficulties for prosecutors, judges and juries alike, and adds to the pressure for greater clarity in the law.

Sarah Wootton, chief executive of Dignity in Dying, said: “Ultimately, the Government needs to review the law in this area. As this case highlights, at present the law is a mess.”

However, Peter Saunders, director of Care Not Killing, said that the law acted as a powerful deterrent to protect vulnerable people from exploitation and abuse.

Judges should have a wide discretion to temper justice with mercy. Then they can show compassion in hard cases without giving a green light to murder.

BBC News

http://news.bbc.co.uk/1/hi/uk/8480039.stm

Lynn Gilderdale ‘mercy killing’ verdict leads papers

The acquittal of the Sussex nurse Kay Gilderdale – who was accused of murdering her severely ill daughter Lynn – is the lead in several papers.

A judge’s criticism of prosecutors for pursuing the case is the Times’ focus .

It also carries Lynn’s diary entry , in which she says she has “had enough of being so sick and in so much pain”.

The Daily Mail says the case was in “stark contrast” to that of Frances Inglis, jailed for fatally giving her son heroin – as Lynn wanted to die.

Guardian

Independent

The Scotsman

London Standard

Telegraph

Lynn Gilderdale: how a 14-year-old was condemned to a life lived from a bed

At the age of 14, Lynn Gilderdale was the picture of health. Sporty, athletic, she excelled at ballet, pursued her love of horses with vigour and was an accomplished musician.

By Caroline Gammell Published: 7:00AM GMT 26 Jan 2010

Gilderdale on the Isle of Wight, aged 12 Photo: CAIRNS

She swam, she cycled, she played the clarinet and, like a typical teenager, enjoyed spending time with her friends.

But in November 1991, that life came shuddering to an end.

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More research is needed to reassure parents about vaccines

She came home from Uplands School in Wadhurst, East Sussex, after a fairly ordinary day, which included a routine inoculation against tuberculosis, and felt unwell.

She never recovered.

Flu was followed by bronchitis, tonsillitis and glandular fever and within three months, her life had changed beyond all recognition.

The teenager lay confined to her bedroom, ME had left her unable to move her legs, swallow or eat. At her most severely ill, she could recognise no one.

She lost the power of speech and had to develop a sign language with her parents that they alone understood.

Her life became ruled by the tubes running down her nose, into her chest and inner thigh, the tubes that fed her and that were a constant reminder that she would never again live a normal life.

Her dreams of returning to the sport she loved, of kissing boys, even of being a mother were crushed one by one. Exchanged for a life reliant on a cocktail of drugs to dull her suffering. It was in her own words: “a miserable excuse for a life”.

At just 20 years old she went through the menopause further eroding her health and her bones became brittle and vulnerable to fracture.

Weeks of suffering turned to months turned to years, and her hopes that she would one day get better, that there would be a cure, were ground down by endless hospital visits and fitful sleep.

But as Miss Gilderdale steadily lost all belief that she would ever get better, there was one person constantly by her side.

At the age of 37, her mother Kay gave up all semblance of a normal life – her work in accounting, holidays and friends – to care round the clock for her daughter.

In 2002, her marriage to Miss Gilderdale’s father Richard collapsed after nearly 30 years, although he remained devoted to his daughter and on friendly terms with his former wife.

For nearly two decades, mother and daughter remained cocooned in their unassuming brick bungalow in the small village of Stonegate, East Sussex.

Visitors – save that of her father and her older brother Stephen – were rare and, in any event, unwelcome because of the noise and potential infection they could bring.

Every morning, her Irish-born mother greeted her in hushed tones, keeping the cotton curtains of her bedroom drawn, regardless of the weather outside because her daughter’s condition meant she could tolerate neither noise nor light.

Resting on a sheepskin rug spread over her sheets to try and prevent bedsores, she would call to her mother for her every need. She required help with the simplest of tasks, such as wanting to turn over in her own bed.

A trained auxiliary nurse, Mrs Gilderdale would come swiftly, responding to her daughter’s voice calling to her from the intercom set up between the bedroom and the sitting room.

They had set up the system to make her daughter feel part of the house. The four walls of her bedroom, cluttered with medical paraphernalia to keep her alive and soft toys to lift her spirits, was her only domain.

Her one concession to the outside world was her computer, with a keyboard small enough to rest on her legs and allow her to communicate with friends.

These were not conventional friends. Most of them she had never met but their lives were all ruined by illness as hers was and as part of an online community, they shared their suffering and found comfort with each other. It was to these people that she revealed her darkest thoughts in an online journal.

But the computer offered solace and happiness as well. She used it to buy presents for her virtual friends as well as family.

Shortly before she died, her father helped her book tickets to the musical Oliver! and a night in a hotel in London for her mother. It was her way of saying thank you for all she had done.

Miss Gilderdale knew only two other environments – the inside of an ambulance and hospital, where she would end up most winters because she was so prone to infection.

During her final hospital visit, she picked up not one but four infections, including one which led to the indignity of being forced to use a bedpan for hours at a time.

It was this constant illness that made life so intolerable. Miss Gilderdale decided she wanted to die and drew up a living will in which she said she feared “degeneration and indignity more than death”.

An attempt to take her own life in 2007 failed, as the morphine she injected was not enough. Her father found her, nearly unconscious, and shook her awake.

She talked to her parents about suicide and what it would mean but it hurt her. Talking to her father, a retired police officer with Sussex Constabulary, about ending her life made her sob. He told her he didn’t want to lose her. But they understood her depths of despair.

Mr Gilderdale, who broke down in tears during his time in the witness box, spoke fondly of his daughter’s good looks, her long dark hair framing her fragile, pale face. But even that had been taken away from her in the last months of her life as her face began to swell.

On the morning of December 3, 2008, she decided she had had enough. Dressed in blue and white checked pyjamas, she called to her mother at 1.45am and told her she could not go on. Mrs Gilderdale tried to persuade her daughter otherwise but failed and at 3am she gave her daughter two large doses of morphine, with which she injected herself.

Miss Gilderdale thought the drug would bring her peace.

For her mother, the ordeal which would see her in court 13 months later, had only just begun. Over the next 30 hours, she neither slept nor ate, tending to her daughter as she clung on to life.

Scouring the internet for information, she gave Miss Gilderdale sleeping pills, antidepressants and further doses of morphine to try and make her comfortable. By 7.10am on December 4, her daughter was dead, aged 31.

She had kept everyone away from the house and when her daughter finally slipped away, an exhausted Mrs Gilderdale finally contacted the world outside.

She sent a text to Lynn’s father. It read: “Please can you come now. Be careful. Don’t rush.”

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image and are archived in Categories under Gilderdale case

Kathleen (Kay) Gilderdale Court case: 12 January 2010

Bridget Kathleen (Kay) Gilderdale Court case: 12 January 2010, Lewes Combined Court

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

Update @ 14 January case resumes tomorrow, Friday, 15 January – please check court listings.

Update @ 12 January from drjohngreensmith@mefreeforall.org   ME Free For All

PERMISSION TO FORWARD AND RE POST FOR ALL M.E. COMMUNITY

Kay’s Trial – Jury selected – Case to open Thursday 14 January 2010 after legal argument.

National News link

Sussex mother on trial over daughter’s ME death (BBC News Online, 12 January 2010)

http://news.bbc.co.uk/1/hi/england/sussex/8454280.stm

Local News links

Mother on trial for attempted murder of ME sufferer daughter (Sussex Argus, 12 January 2010)

http://www.theargus.co.uk/news/4846087.Mother_on_trial_for_attempted_murder_of_ME_sufferer_daughter/

East Sussex mother on trial for attempted murder of daughter (Kent & Sussex Courier, 12 January 2010)

http://www.thisissussex.co.uk/news/East-Sussex-mother-trial-attempted-murder-daughter/article-1700039-detail/article.html

Mother on trial over daughter’s death (Hastings Observer, 12 January 2010)

http://www.hastingsobserver.co.uk/latest-south-east-news/Mother-on-trial-over-daughters.5973621.jp

Gilderdale Trial (Heart Radio, Sussex, 12 January 2010)

http://www.heartsussex.co.uk/Article.asp?id=1034851

freefoto
Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and legal case are identified by the Freefoto.com image above and are archived in Categories under Gilderdale case

Bridget Kathleen (Kay) Gilderdale, whose daughter Lynn died in December 2008, will be appearing at Lewes Crown Court on 12 January 2010.

Kay will be wearing a white carnation in her lapel and has requested that those attending the court do likewise to show solidarity.

ME agenda is not able to respond to enquiries in connection with the case from members of the public or the media.

 

Media coverage

The Argus  | 12 January 2009  | 10.35 am

Mother on trial for attempted murder of ME sufferer daughter

Click here for all previous coverage of the Gilderdale family’s case. The 24 postings are archived in reverse date order: Gilderdale case archive on ME agenda

Dr John Greensmith, ME Free For All, reports that:

The case is still scheduled to go ahead, tomorrow, Tuesday 12 January 2010 in Court room 1 at the Lewes Combined Court on the High St. Starting at 10.30am.

There is poor disabled access. Stone steps leading up to the front of the building. No wheelchair ramp. Disabled access to the Building via ramp from behind the court room in Castleditch Lane. Ramp is very icy. Castleditch Lane narrow. No disabled parking at the court at all.

I’ve been told that the stairs are not too bad if one is ambulatory and/or uses a stick. It’s the usual solution of grasping the rail and hauling one’s self up the stairs.

There is a button to press if this is impossible. A security guard will come out and help if needed. A wheelchair bound person would need to get out of their chair and have the chair carried up by the security guard and then assisted up the stairs (unless they’re light and the security guard would carry them) Not at all satisfactory.

Court 1 is very small, Victorian, hard bench seats, no space for a wheelchair in the court but can get into the building, temperature tends to go from hot to cold and then back again. Current problems with heating. Wear layers, stairs up to the public gallery. Speak to the Usher before the court if you need to drink water, take pills or need a small snack for blood sugar problems.

Daily List for Tuesday 12 January 2010 at THE LAW COURTS, 182 HIGH STREET, LEWES

Court 1 – sitting at 10:30 am
THE HONOURABLE MR JUSTICE BEAN
For Trial
T20097199 GILDERDALE Bridget K
47CC3005109

This is the latest we have but please do check with the Court Service if intending to travel.

The trial may last 3 weeks so there is time for anyone to send a letter to the DPP asking that the Crown Prosecution Service drop the case because it is not in the public interest. See my other postings for contact details or send me an  e-mail.

Best wishes
John

drjohngreensmith@mefreeforall.org
ME Free For All

Lynn’s experience of living with ME had been published by the Mail in 2006:

http://www.dailymail.co.uk/health/article-393915/Trapped-bed-14-years-chronic-fatigue.html

and also by the BBC in 2001:

http://news.bbc.co.uk/1/hi/health/1234297.stm 

For many years, Lynn had been the “face” of the 25% ME Group

25% M.E. Group Statement 

Lynn Gilderdale

Statement

http://www.25megroup.org/News/news.htm

Kay Gilderdale Support Fund

http://www.25megroup.org/News/Kay%20Gilderdale%20support%20fund.doc

 

Dr Macintyre and the Gilderdale family discuss ME

News at Ten 
16/04/09

Channel 4 news, 7pm
16/04/09

ITN news, 10pm
16/04/09

Click here for all previous coverage of the Gilderdale family’s case. The 24 postings are archived in reverse date order:

Gilderdale case archive on ME agenda

Kathleen (Kay) Gilderdale 12 January court appearance: 1

Kathleen (Kay) Gilderdale 12 January court appearance: 1

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

freefoto
Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and legal case are identified by the Freefoto.com image above and are archived in Categories under Gilderdale case

Update: I am advised that the case is likely to be held Court room 1 at the Lewes Combined Court. Most likely heard from 10.00 am or 10.30 am but the times will not be confirmed until the day before.

Please check the court website page that lists court hearings, on 11 January, for timings: http://www.hmcourts-service.gov.uk/cms/courthearings.htm

Kathleen (Kay) Gilderdale, whose daughter Lynn died in December 2008, will be appearing at Lewes Crown Court on 12 January 2010.

Kay will be wearing a white carnation in her lapel and has requested that those attending the court do likewise to show solidarity.

ME agenda is not able to respond to enquiries about the case from members of the public or the media. Enquiries in relation to attending the court appearance on 12 January are best directed to Dr John Greensmith of ME Free For All but any information that becomes available will be published here.

Dr John H Greensmith
drjohngreensmith@mefreeforall.org
ME Free For All

Lynn’s experience of living with ME had been published by the Mail in 2006:

http://www.dailymail.co.uk/health/article-393915/Trapped-bed-14-years-chronic-fatigue.html

and also by the BBC in 2001:

http://news.bbc.co.uk/1/hi/health/1234297.stm 

For many years, Lynn had been the “face” of the 25% ME Group

25% M.E. Group Statement 

Lynn Gilderdale

Statement

http://www.25megroup.org/News/news.htm

Kay Gilderdale Support Fund

http://www.25megroup.org/News/Kay%20Gilderdale%20support%20fund.doc

 

Dr Macintyre and the Gilderdale family discuss ME

News at Ten 
16/04/09

Channel 4 news, 7pm
16/04/09

ITN news, 10pm
16/04/09

Click here for all previous coverage of the Gilderdale family’s case. The 24 postings are archived in reverse date order:

Gilderdale case archive on ME agenda

XMRV Retrovirus presentations: Klimas, de Meirleir, Hyde

XMRV Retrovirus presentations: Klimas, de Meirleir, Hyde

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

Dr Nancy Klimas lecture, Florida, 7 November 2009

A video of Dr Nancy Klimas’s 7 November lecture is expected soon on Dan Moricoli’s CFS-ME Network, here:

http://cfsknowledgecenter.ning.com/

An earlier video, “Dr Nancy Klimas discusses the XMRV virus discovery, what it means, what’s next and what you can do”, recorded 12 October, can be viewed in the Video Section here:

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

————–

Göteborg Conference, Sweden

Dr Byron Hyde: Missed Diagnoses
Dr Kenny de Meirleir: End of an Era of Medical Negation

Göteborg 10th November: Professional’s Day
Göteborg 11th November: Public meeting http://www.rme.nu/node/85

Malmö 12th November: Public Meeting http://www.skane.se/templates/Page.aspx?id=266536

According to Whittemore-Peterson Institute on Facebook, the Byron Hyde and Kenny de Meirleir lectures in Göteborg on Professionals Day, 10 November will be videotaped and placed on the internet.  A DVD will also be available for purchase at Riksföreningen ME Göteborg (email: goteborg@rme.nu).

http://www.rme.nu/lokala-foreningar/rme-goteborg

A PDF of Dr Hyde’s conference address is available here:

http://www.nightingale.ca/documents/GoteborgConference.pdf 

(Pages 7 and 8 for section: “The Whittemore Peterson Institute CFS – Retrovirus Announcement” )

Göteborg and Malmo, Sweden
M.E. Conferences: November 2009

Link back

For initial Whittemore Peterson Press Release and NIH (National Institutes of Health) News Release go here: http://wp.me/p5foE-272

For Science paper go here: http://wp.me/p5foE-2is

Go here for all previous XMRV Round ups and postings in reverse date order: https://meagenda.wordpress.com/category/xmrv/

XMRV Retrovirus Round up 22: WPI Press Release, ESME, 74 CFSAC meeting videos

XMRV Retrovirus   Whittemore Peterson   Institute Science   Mikovits   Peterson   Chronic Fatigue Syndrome

XMRV Retrovirus: Round up 22: WPI Press Release, ESME, 74 CFSAC meeting videos

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

Press Releases

PDF here: WPI Release Diagnostic Test

http://www.wpinstitute.org/WPI%20Release%20Diagnostic%20Test.pdf

FOR IMMEDIATE RELEASE

Frankie Vigil
R&R Partners
775-336-4555
frankie.vigil@rrpartners.com

Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians
-Net proceeds from test dedicated to further WPI research-

RENO, Nev. – The Whittemore Peterson Institute (WPI) has recently published a research study revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS or what has most recently been called, X associated neuro-immune disease, (XAND). In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily agreed to allow Viral Immune Pathology Diagnostics (VIP Dx) to begin offering the identical tests that have been extensively validated using the same technology developed by Drs. Lombardi and Mikovits and their colleagues as reported in Science.

VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune diseases, the Whittemore family made the decision to support the lab in Reno.

“Our family made it possible for the lab to not only continue delivering diagnostic tests to doctors, but also help the WPI bring cutting edge biomarkers of disease to this field of medicine, such as the tests for XMRV,” said Annette  Whittemore, Founder and President of WPI. “Tests conducted for XMRV, and other tests that support the diagnostic process in this field, will support the continuation of vital work at WPI through our donation of all of our net proceeds.”

XMRV test acceptance commenced at VIP Dx this month.

For more information about the XMRV test kit, visit www.vipdx.com

Whittemore Peterson Institute  http://www.wpinstitute.org/

The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses caused by acquired dysregulation of the immune system and the nervous system, often resulting in lifelong disease and disability. The WPI is the first institute in the world dedicated to neuro immune diseases, integrating patient treatment, basic and clinical research and medical education.

—————-

CFSAC Two Day meeting: NIH videocasts now available plus 74 Video segments

http://cfsknowledgecenter.ning.com/video

74 videos covering the CFSAC Two Day meeting (29 – 30 October) on Dan Moricoli’s Ning ME-CFS Community.

—————-

NIH will be counting viewing figures to assess interest in making videocasts for these meetings available worldwide – so please view the videocasts on the NIH site:

Videocasts of CFSAC meeting 29-30 October 2008

Around 12 hours of video of the two day CFSAC meeting is now available at:

http://videocast.nih.gov/PastEvents.asp

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 1
Thursday, October 29, 2009
HHS Office on Women’s Health (OWH)
Total Running Time: 06:43:49

http://videocast.nih.gov/PastEvents.asp

Chronic Fatigue Syndrome Advisory Committee Meeting (CFSAC) – Day 2
Friday, October 30, 2009
HHS Office on Women’s Health (OWH)
Total Running Time: 05:15:09

Presentation

Dr David Bell’s PowerPoint slides: http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

———-

Media

The Street   |  3 November 2009

http://www.thestreet.com/_yahoo/story/10620979/1/hemispherx-cops-to-ampligen-fda-delay.html

Ref: Hemispherx press release:

http://finance.yahoo.com/news/Hemispherx-Biopharma-Updates-pz-1535703186.html 

See also:

http://philadelphia.bizjournals.com/philadelphia/stories/2009/11/02/daily2.html

Hemispherx cops to Ampligen FDA delay

PHILADELPHIA, Pa. (TheStreet) – Hemispherx Biopharma(HEB Quote) issued an “update” to the regulatory status of its chronic fatigue syndrome drug Ampligen in which the company essentially admits that its prior public statements were false and misleading.

Monday’s statement was likely crafted by Hemispherx’s lawyers as a way to help CEO Bill Carter wiggle out of public statements he made in May and June claiming the Ampligen application to the U.S. Food and Drug Administration to be complete. Carter insisted regulators weren’t asking for any additional information on Ampligen.

Read full article here

—————-

Patient organisation statements

ESME www.esme-eu.com

Dear Whittemore Peterson Institute,

The Scientific Panel, the Board of Directors and the staff of ESME wish to congratulate the Whittemore Peterson Institute on the groundbreaking work they are performing in the area of neuro-immune diseases and especially their work with the XMRV virus. We applaud the thoroughness of your research and the openness with which you are sharing this research information with the world. We believe that by sharing scientific knowledge with this openness, you are starting a new era of scientific cooperation.

ESME would like to help the Whittemore Peterson Institute with information flow in Europe. We have the capacity to professionally translate information to Danish, Dutch, German, Norwegian, French and Spanish and we have a professional website where information can be posted in any of these languages: www.esme-eu.com  

ESME has also established a database of approximately 3000 e-mail addresses of European scientists, doctors, medical associations, national and regional ME associations, politicians, journalists and other people interested in ME/CFS. This database allows us to easily distribute information to professionals in many fields. We will gladly use our resources to assist the Whittemore Peterson Institute with the distribution of information in Europe.

In 2009, ESME held two conferences in Norway to educate healthcare personal (and patients) about the diagnostics, treatment, causes and consequences of ME/CFS. ESME will continue organizing these conferences in the coming years throughout Europe. We would like to invite a representative of the WPI to be a guest speaker at future European conferences to help us inform and train European MD’s and therapists better.

With Kind Regards,

ESME

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Commentary

Cort Johnson’s Phoenix Rising website: http://aboutmecfs.org/Rsrcs/XMRVResources.aspx

Cort Johnson’s Blog and comments: http://aboutmecfs.org/blog/

Cort Johnson’s Forums: http://forums.aboutmecfs.org/

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About.com  Fibromyalgia  and CFS Blog  | 5 November 2009

XMRV & Updated Mechanism Theory of Chronic Fatigue Syndrome

The XMRV Discovery Series

Dr. Daniel Peterson, one of the researchers involved in the possibly groundbreaking XMRV findings, testified before the NIH’s Chronic Fatigue Syndrome Advisory Committee Oct. 29. Among the many things he presented was an updated theory of how chronic fatigue syndrome (CFS or ME/CFS) develops. (Thanks to Dr. David S. Bell and his newsletter, Lyndonville News for putting this into language that was easier to understand!)

Read full article here

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For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, go here: http://wp.me/p5foE-272

For Science paper go here: http://wp.me/p5foE-2is

Click here for all previous XMRV Round ups and postings in reverse date order: https://meagenda.wordpress.com/category/xmrv/

The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com