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Factual Inaccuracy, Dr Shepherd and the UK MEOpathy Association.

Discussion in 'Action Alerts and Advocacy' started by Anglia ME Action (UK), Dec 25, 2010.

  1. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    Factual Inaccuracy, Dr Shepherd and the UK MEOpathy Association.

    Dear all,

    On 22 December 2010 I posted an item on CoCure entitled "Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS..." The text was also posted on various other websites. The CoCure post detail is as follows and the post is reproduced in full below as reference to it is important for what I have to say in this post. I gave permission for my post to be reposted.
    CoCure Item #024356, 22 December 2010, ACT: Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS...
    http://www.co-cure.org/

    On 24 December 2010, Dr Charles Shepherd of the UK Myalgic EncephalOPATHY Association posted an item on CoCure entitled "MEA coverage of the latest research on XMRV." The CoCure post detail is as follows and the post is also reproduced in full below as reference to it is important for what I have to say in this post. Note that Dr Shepherd clearly states that his post "MAY BE REPOSTED".
    CoCure Item #024367, 24 December 2010, ACT: MEA coverage of the latest research on XMRV
    http://www.co-cure.org/

    In his said 24 December post Dr Shepherd says "Before anyone else sends me an abusive email over Christmas please could they note that the statement that has been sent round the internet by Kevin Short relating to the ME Association coverage of the latest XMRV research findings published in Retrovirology contains a number of factual inaccuracies."

    I would firstly wish to make it clear that I do not condone anyone sending Dr Shepherd abusive emails and would emphatically advise all ME patients NOT to do this.

    Secondly, Dr Shepherd says that my said statement "contains a number of factual inaccuracies." He goes on to say "The ME Association did not commission or request a commentary on these papers from Professor Tony Pinching. This commentary was provided for the Kent and Sussex ME Society. The link to the Kent and Sussex ME Society is clearly included at the end of the commentary."

    For the record, I did NOT say that Professor Pinching's article was commissioned exclusively for the Myalgic EncephalOPATHY Association. Neither did I say that the MEA requested Pinching's article, as Dr Shepherd seems to be claiming I did. Moreover, I pasted the Pinching article, as it appeared on the MEA website, in full - and within my posting and at the end of the Pinching posting it clearly states "Professor Anthony J Pinching", "21 December 2010", "Prof Pinching is a medical advisor to the Sussex & Kent ME/CFS Society", "www.measussex.org.uk". I therefore gave as much information about the source of the article as the MEA website did.

    My phrase "Pinching just happened to provide an 'XMRV Update...' article (see below) for the Myalgic EncephalOPATHY Association" is subject to semantic interpretation here. Pinching was the author of the article the MEA website published and Pinching has a direct and long-standing association with the Kent & Sussex ME/CFS Society [1 -see endnotes below]. Given Dr Shepherd is emphatically saying "The ME Association did not commission or request a commentary on these papers from Professor Tony Pinching" then one has to conclude someone sent it to the MEA of their own accord. Presumably it therefore was the Sussex & Kent ME/CFS Society / Pinching that sent the article to the MEA? Perhaps Dr Shepherd and his Myalgic EncephalOPATHY Association can specify which?

    Dr Shepherd goes on to say "We believe in publishing a wide spectrum of information and opinion in our news section. We do not believe that we should censor material because we take the position that people with ME/CFS have a right to know what a variety of clinicians and researchers are saying about new research findings involving XMRV - even though they may not agree with the opinions being expressed."

    Let me be quite clear, I emphatically do not believe the MEA should engage in censorship either, I never called for this and it is misleading if Dr Shepherd is claiming that I did. I also most certainly think that UK ME patients need to be aware both that Professor Pinching is presenting demonstrable misinformation relating to gamma retroviral research and should be aware of his questionable role in ME matters more generally[1 - see endnote below]. How the Pinching article got to the MEA is a minor point. My primary complaint against the Myalgic EncephalOPATHY Association website was, and is, that when crucial gamma retroviral research was, in my view, misrepresented in the Retrovirology journal and certainly misrepresented in much of the mainstream international press from 21 and 22 December respectively, The MEA website emphatically did NOT give "a wide spectrum of information and opinion in our [its] news section." On the contrary, it gave prime coverage on the matter on 20 & 21 December to two highly misleading and controversial articles, first from the Wellcome Trust Sanger Institute and second from Professor Pinching:

    "New UK study casts doubts on the link between XMRV and ME/CFS
    by tonybritton on December 20, 2010
    Press release issued by the Wellcome Trust Sanger Institute, 20 December 2010
    Chronic Fatigue Syndrome is not caused by XMRV
    New research shows XMRV virus is a lab contaminant
    A virus previously thought to be associated with chronic fatigue syndrome is not the cause of the disease, a detailed study has shown. The research shows that cell samples used in previous research were contaminated with the virus identified as XMRV and that XMRV is present in the mouse genome..."
    http://www.meassociation.org.uk/?p=3548

    "XMRV update: comment from Professor Tony Pinching
    by tonybritton on December 21, 2010
    Since the original study suggesting a possible link between CFS/ME and the XMRV retrovirus, there have been six published reports from reputable groups in three continents that have failed to find evidence of this virus. These studies have used appropriate techniques in well characterised CFS/ME patients. One study found evidence of two different retroviruses, the significance of which is unclear.
    Four very recent further studies (two of them including as author one of the original commentators on the first report) have provided strong evidence to suggest that laboratory and/or reagent contamination are the likely explanation for the original findings..."
    http://www.meassociation.org.uk/?p=3581

    Please note: In spite of the fact that both Dr Judy Mikovits and Dr Kenny De Meirlier immediately posted rebuttals to the Retrovirology articles (they were so misleading that Dr Meirleir quite rightly called them "a crime against humanity") and that these rebuttals were posted widely on ME lists to which Dr Shepherd subscribes, The MEA website did NOT carry their comments to balance those of the Wellcome Trust Sanger Institute and Pinching. In fact, in spite of my drawing Dr Shepherd's attention to such MEA website imbalance on 22 December on the UK LocalME weblist, to which he subscribes and to which he responded, the MEA website still did not correct the imbalance and then went on to post further one-sided disinformation the next day in the form of coverage by the BBC:

    "ME, or chronic fatigue syndrome, not caused by virus, say researchers BBC News
    by tonybritton on December 22, 2010
    From BBC News Online (story by Helen Briggs, health reporter). Updated version of story first published on 20 December,2010.
    A new study has cast further doubt on the idea that a virus called XMRV causes chronic fatigue syndrome.
    US scientists linked the condition, also known as ME, to a mouse-like virus in 2009 after finding it in blood samples.
    Now, UK experts say the discovery was a false positive, caused by cross contamination in the lab.
    The illness may still be caused by a virus, they say, but not the one at the centre of recent controversy.
    Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome, said Professor Greg Towers..."
    http://www.meassociation.org.uk/?p=3601

    I hope that readers will take detailed note that it was not until AFTER I and others had publicly and strongly complained about the balance of the Myalgic EncephalOPATHY website coverage of the Retrovirology Journal's and others claims on "XMRV Contamination" that some of that balance eventually began to be redressed on the MEA website from December 23rd onwards. I simply do not believe such delay in giving balanced coverage on such a crucially important matter is good enough given all the money the MEA receives from ME patients in order to act as its advocate. Many other ME organisations that receive much less funding, or none at all for that matter, were able to give more balanced website coverage - including the Mikovits & De Meirleir rebuttals. Why not the MEA? Particularly given it has a de-facto role as a virtual media clearing-house in the UK given journalists look to its website for as a main source of ME/CFS comment.

    That is why I said "Where is the editorial comment from Dr Shepherd and his MEOpathy Association giving a more balanced view of matters and pointing out the blatant inaccuracies in Pinching's article? Pinching's article and the MEOpathy website it is on is not only failing to do right by ME patients it is misleading both them and the public. With 'friends' like that who needs enemies?"

    The fact is, not only was Dr Shepherd and the MEA failing to post balancing and important comments by Drs Mikovits and De Meirleir and others on December 22nd on the MEA website, Dr Shepherd was actively drawing attention to the said highly misleading article by Professor Pinching. If the MEA do not "censor" on their website then they were certainly engaging in poor, imbalanced and misleading editorial practice in not posting the comments of Mikovits and De Meirlier.

    My complaint in my said posting of 22 December therefore was "Dr Charles Shepherd is posting on the internet (LocalME UK at Yahoo Groups 22 December 2010) notice of the fact that Professor Pinching just happened to provide an "XMRV Update..." article (see below) for the Myalgic EncephalOPATHY Association on the day that five decidedly dodgy "XMRV is all just lab contamination" papers/articles appeared courtesy of Retrovirology (followed the day after by further outstanding examples of grossly imbalanced British Journalism on the matter at the BBC, Guardian and elsewhere)."

    As said, I did NOT claim the Pinching article was provided exclusively for the MEA and my posting contained information on the Sussex & Kent ME/CFS Society source. I think that my primary concerns on its content and MEA website imbalanced coverage of it were fully justified.

    I also stated in my said 22 December post that "I think that UK Myalgic EncephaloMYELITIS patients would be much, MUCH better off giving their money to the charities 'Invest in ME' and 'ME Research UK' than to the decidedly failed and lukewarm so-called advocacy outfit that is the Myalgic EncephalOPATHY Association. I emphatically stand by such views. The one major oversight was that I should have added that, in my humble opinion, UK ME patients would be much better off in the long rung giving money to the Whittemore Peterson Institute for research than to the Myalgic EncephalOPATHY Association. I am happy to correct that oversight now. Please DO donate to the WPI at:
    http://www.wpinstitute.org/help/index.html

    Kevin Short.
    25 December 2010.
    contact@angliameaction.org.uk

    [Permission to repost]
    -------------------------------
    [ CoCure Item #024367, 24 December 2010, ACT: MEA coverage of the latest research on XMRV
    http://www.co-cure.org/ ]
    Date: Fri, 24 Dec 2010 13:33:38 -0000
    From: Charles Shepherd <charles.c.shepherd@BTINTERNET.COM>
    Subject: ACT: MEA coverage of the latest research on XMRV

    MAY BE REPOSTED

    Before anyone else sends me an abusive email over Christmas please =
    could they note that the statement that has been sent round the internet =
    by Kevin Short relating to the ME Association coverage of the latest =
    XMRV research findings published in Retrovirology contains a number of =
    factual inaccuracies.

    The ME Association did not commission or request a commentary on these =
    papers from Professor Tony Pinching. This commentary was provided for =
    the Kent and Sussex ME Society. The link to the Kent and Sussex ME =
    Society is clearly included at the end of the commentary.

    The comments from Professor Pinching were placed in the MEA website =
    news section as part of our coverage of the latest research papers that =
    have been published in Retrovirology.

    We believe in publishing a wide spectrum of information and opinion in =
    our news section. We do not believe that we should censor material =
    because we take the position that people with ME/CFS have a right to =
    know what a variety of clinicians and researchers are saying about new =
    research findings involving XMRV - even though they may not agree with =
    the opinions being expressed.

    In the case of the Retrovirology papers we published the Wellcome =
    Trust press release along with the statement from the WPI. We have also =
    provided links to, or republished, a number of other news items, blogs, =
    videos (including the Nevada TV interview with Annette Whittemore and Dr =
    Judy Mikovits >> http://www.meassociation.org.uk/?p=3D3641) etc relating =
    to this research. The MEA coverage is therefore balanced.

    I have also been in contact with the BBC about their on-line coverage =
    of the Retrovirology papers and this has resulted in some additional =
    balancing comment being placed at the end of in this website item:
    http://www.meassociation.org.uk/?p=3D3601

    The latest XMRV summary from the MEA can be found here: =
    http://www.meassociation.org.uk/?p=3D2240 This will shortly be updated =
    to include the latest papers in Retrovirology.

    People are obviously free to choose where they send donations for =
    research. The MEA has made it clear that the Ramsay Research Fund is =
    keen to fund good quality applications which will help to resolve the =
    uncertainty over XMRV and ME/CFS and we have been in discussion with =
    various retrovirologists as to what form this might take. We are =
    currently funding a study into muscle abnormalities in ME/CFS. Our =
    major fundraising initiatives at present are to set up a UK biobank =
    (which will hopefully start next year) and a post-mortem and tissue =
    bank. Results from post-mortems that have already taken place were =
    presented at an international research meeting in Australia in early =
    December >>=20
    =
    http://www.bond.edu.au/faculties-colleges/faculty-of-health-sciences-and-=
    medicine/news/BD3_015734

    More information on the Ramsay Research Fund can be found =
    here:http://www.meassociation.org.uk/?page_id=3D1086

    Dr Charles Shepherd
    Hon Medical Adviser, MEA=20
    24 December 2010

    http://www.meassociation.org.uk
    --------------------------------------------------

    [ CoCure Item #024356, 22 December 2010, ACT: Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS...
    http://www.co-cure.org/ ]
    Date: Wed, 22 Dec 2010 12:42:24 +0000
    From: "contact@angliameaction.org.uk" <contact@ANGLIAMEACTION.ORG.UK>
    Subject: ACT: Response Re Pinching at the MEopathy Association - XMRV has no role in ME/CFS...

    Dear All,

    Dr Charles Shepherd of the UK Myalgic EncephalOPATHY Association has
    taken exception to my below posting of 22 December 2010 entitled
    "Pinching at the MEopathy Association - XMRV has no role in ME/CFS..."
    He responds with the following explanation/excuse on the internet today
    for the MEA's recent website coverage of the XMRV/Retrovirology issue:

    "The MEA has a rolling news service on its website. We publish articles
    and news items which we feel will be of interest to the whole ME
    community and this involves publishing a wide spectrum of information
    and comment. We do not censor material that is likely to be of interest."

    The only coverage however of the recent Retrovirology Journal/XMRV
    "contamination" matters on the MEA website that I could find at the time
    of me writing this however was decidedly one-sided, highly misleading
    and consisted of only two articles: the aforementioned one by Professor
    Pinching and the press-release by the Wellcome Trust Sanger Institute
    (posted below).

    I'm sorry but it is simply not good enough for the MEA website to be
    giving one-sided partial coverage of such matters. There were plenty of
    other views that would be "of interest to the whole ME community" such
    as the responses of Dr Mikovits and Dr De Meileir. Why did the MEA
    website not publish these? The ME Association and Dr Shepherd are
    supposed to be advocating for patients, not allowing their website to be
    used as a one-sided platform for those who are misrepresenting the
    science and potential dangers of XMRV and other retroviruses in ME. Dr
    Shepherd also states of me that "I know you don't like the MEA..." It is
    not however a case of me not personally liking the MEA because of some
    irrational vendetta, it is far more serious in that I think the MEA has
    simply not been doing an adequate advocacy job for patients who pay them
    to do so. On balance, I think the MEA has very badly let patients down
    over the years.

    Both the ME Association and Dr Shepherd unfortunately have a
    long-standing highly questionable record regarding their role in matters
    ME in my view and I say again, do please look at the section on British
    ME charities in the document entitled 'Corporate Collusion' at:
    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
    Follow the paper trail on this generally in the documents section at:
    http://www.meactionuk.org.uk

    Enough really is enough as far as I am concerned. I again call on all UK
    ME patients to stop giving their money to the ME Association and instead
    use it far more productively by donating it to:

    The Whittemore Peterson Institute:
    http://www.wpinstitute.org/
    Invest in ME:
    http://www.investinme.org/index.htm
    ME Research UK:
    http://www.meresearch.org.uk/

    Kevin Short
    22 December 2010
    contact@angliameaction.org.uk

    [Permission to repost].
    -----------------------------

    From the MEA Website 22 December 2010:

    "New UK study casts doubts on the link between XMRV and ME/CFS on
    December 20th, 2010

    New UK study casts doubts on the link between XMRV and ME/CFS
    by tonybritton on December 20, 2010

    Press release issued by the Wellcome Trust Sanger Institute, 20 December
    2010
    http://www.meassociation.org.uk/?p=3D3548
    Chronic Fatigue Syndrome is not caused by XMRV
    New research shows XMRV virus is a lab contaminant

    A virus previously thought to be associated with chronic fatigue
    syndrome is not the cause of the disease, a detailed study has shown.
    The research shows that cell samples used in previous research were
    contaminated with the virus identified as XMRV and that XMRV is present
    in the mouse genome.

    XMRV was first linked to chronic fatigue syndrome =96 also known as
    myalgic encephalomyelitis (ME) =96 in a study published in October 2009,
    where blood samples from chronic fatigue syndrome patients were found to
    have traces of the virus. XMRV had also been identified previously in
    samples from certain prostate cancer patients.

    The new study, published in Retrovirology, identifies the source of XMRV
    in chronic fatigue syndrome samples as being cells or mouse DNA rather
    than infection by XMRV. The research does not rule out a virus cause of
    chronic fatigue syndrome =96 it is simply not this virus.

    The research team developed improved methods to detect XMRV against the
    genetic noise of other sequences and make recommendations for future
    study of virus causes of human disease.

    =93Our conclusion is quite simple: XMRV is not the cause of chronic
    fatigue syndrome,=94 says Professor Greg Towers, a Wellcome Trust Senior
    Research Fellow at University College London (UCL). =93All our evidence
    shows that the sequences from the virus genome in cell culture have
    contaminated human chronic fatigue syndrome and prostate cancer samples.

    =93It is vital to understand that we are not saying chronic fatigue
    syndrome does not have a virus cause =96 we cannot answer that yet =96 bu=
    t
    we know it is not this virus causing it.=94

    The team, from University College London, Wellcome Trust Sanger
    Institute and University of Oxford, showed clearly that the experimental
    design of previous studies would pick up sequences that resembled XMRV;
    however, in this improved study, they could prove that the signal was
    from contamination by a laboratory cell line or mouse DNA. The sequences
    from the contaminated cell line and chronic fatigue patient samples were
    extremely similar, contrary to the pattern of evolution expected during
    the infectious spread of a virus in a human population.

    They also showed that the existing methods would indicate that one in
    fifty human cell lines they examined were infected with XMRV-related
    viruses: they showed that contamination of human tumour cells with
    XMRV-related viruses is common and that a principal prostate cancer line
    used is contaminated.

    =93When we compare viral genomes, we see signs of their history, of how
    far they have travelled in space or time,=94 says Dr St=E9phane Hu=E9, Po=
    st
    Doctoral Researcher at UCL. =93We would expect the samples from patients
    from around the world, collected at different times, to be more diverse
    than the samples from within a cell line in a lab, where they are grown
    under standard conditions. During infection and transmission in people,
    our immune system would push XMRV into new genetic variants.

    =93Viral infection is a battle between the virus and the host and XMRV
    does not have the scars of a virus that transmits between people.=94

    Together the results demonstrate that XMRV does not cause chronic
    fatigue syndrome or prostate cancer in these cases. The team=92s methods
    suggest ways to ensure that virus contamination does not confound the
    search for a cause of disease in future work.

    The authors propose that more rigorous methods are used to prevent
    contamination of cell and DNA samples. They also suggest that consistent
    and considered standards are needed for identifying viruses and other
    organisms as cause of a disease.

    =93Increasingly, we are using DNA-based methods to accelerate our
    understanding of the role of pathogens in disease,=94 explains Professor
    Paul Kellam, Virus Genomics group leader from the Wellcome Trust Sanger
    Institute. =93These will drive our understanding of infection, but we mus=
    t
    ensure that we close the circle from identification to association and
    then causation.

    The strongest lesson is that we must fully use robust guidelines and
    discriminatory methods to ascribe a cause to a disease.=94"

    -----------------------------

    Pinching at the MEopathy Association - XMRV has no role in ME/CFS...

    Dear All,

    Dr Charles Shepherd is posting on the internet (LocalME UK at Yahoo
    Groups 22 December 2010) notice of the fact that Professor Pinching just
    happened to provide an "XMRV Update..." article (see below) for the
    Myalgic EncephalOPATHY Association on the day that five decidedly dodgy
    "XMRV is all just lab contamination" papers/articles appeared courtesy
    of Retrovirology (followed the day after by further outstanding examples
    of grossly imbalanced British Journalism on the matter at the BBC,
    Guardian and elsewhere).

    Professor Pinching concludes in his MEA article: "The current view of
    informed observers is that the research evidence does not support the
    idea that XMRV or other retroviruses have a role in the causation or
    manifestations of CFS/ME."

    What utter rubbish! "informed observers"! If you want to know what
    genuinely informed observers really think then go to:
    http://cfspatientadvocate.blogspot.com/2010/12/mouse-that-roared.html
    http://www.facebook.com/notes/xmrv-global-action/xmrv-global-actions-resp=
    onse-to-the-cbc-news-coverage-of-retrovirology-on-xmrv/486793716796
    http://www.wpinstitute.org/index.html
    http://merutt.wordpress.com/2010/12/20/uttalelse-fra-prof-kenny-de-meirle=
    ir-om-de-5-kontaminerings-studiene-fra-uk/

    Call me a cynic but such Pinching/MEOpathy coverage seems more than a
    tad imbalanced to me and out of place for an organisation that's
    supposed to be advocating for sound science and proper treatment for ME
    patients. Where is the editorial comment from Dr Shepherd and his
    MEOpathy Association giving a more balanced view of matters and pointing
    out the blatant inaccuracies in Pinching's article? Pinching's article
    and the MEOpathy website it is on is not only failing to do right by ME
    patients it is misleading both them and the public. With 'friends' like
    that who needs enemies?

    Here's a personal opinion for free. I think that UK Myalgic
    EnephaloMYELITIS patients would be much, MUCH better off giving their
    money to the charities 'Invest in ME' and 'ME Research UK' than to the
    decidedly failed and lukewarm so-called advocacy outfit that is the
    Myalgic EncephalOPATHY Association.

    Do yourself a favour and read the section on British ME charities in
    'Corporate Collusion' at:
    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

    Enough is enough.

    Kev Short
    contact@angliameaction.org.uk

    [Permission to repost].
    -----------------------------------

    ENDNOTES:

    [1] See for example Suzy Chapman's / ME Agenda posting (extracts follow herewith) at:
    http://forums.aboutmecfs.org/showth...opathy-Association-XMRV-has-no-role-in-ME-CFS...

    A little background on Professor Anthony (Tony) Pinching:

    For a number of years, Prof Tony Pinching served as Principal Medical Adviser to Action for M.E. (AfME).

    In December, last year, AfME reported that Prof Pinching was shortly to stand down as Medical Adviser. In May, this year, AfME announced that Dr Alastair Miller (Infectious Disease Consultant at the Royal Liverpool University Hospital, Clinical Lead for CFS services in 2006) had been appointed as their new Medical Adviser and Prof Pinching had now become a Patron to AfME.

    In early December 2009, Prof Pinching had issued these comments on XMRV research, following the publication of the paper in Science:

    "Professor Tony Pinching, Action for M.E.s Principal Medical Adviser, sets out his views on XMRV in this article from InterAction 70"

    ME agenda Post: December 12, 2009: http://wp.me/p5foE-2vD

    Prof Pinching is a former Professor of Immunology at Barts and the Royal London (including AIDS/HIV research) and has published many papers on immunology and latterly on CFS (PubMed search for: Pinching, AJ).

    He is Associate Dean (Cornwall) & Professor, Undergraduate, Peninsula Medical School, Royal Cornwall Hospital.

    He was CFS lead consultant for the area CFS service (consultant clinical immunologist).

    Prof Pinching also chaired the CFS/ME Service Implementation Steering Group which oversaw the setting up, funding bids and running of the English CFS clinics rolled out from 2006 and lead adviser for the Department of Health on CFS/ME.

    He was deputy chair of the CFS/ME Independent Working Group which wrote the CMO's report.

    See: http://www.meactionuk.org.uk/Pinchings_Perception.html

    Pinchings Perception? by Eileen Marshall Margaret Williams, 20th January 2006...

    ...Professor Anthony Pinching on ME/CFS

    for quotes from: Prescribers Journal 2000 Vol. 40 No.2

    http://www.theoneclickgroup.co.uk/do... No. 2.pdf

    for example:

    "The essence of treatment is activity management and graded rehabilitation."

    "Over investigation can also be harmful and counterproductive to the managements of these patients, raising inappropriate concerns and causing them to seek abnormal test results to validate their illness."

    "Others overcompensate and avoid activity, fearing relapse, but then develop symptoms of deconditioning (cardiovascular and muscular unfitness) or excessive awareness of physiological changes."

    He is a member of the MRC's CFS/ME Expert Group panel.

    Declaration of interest as MRC CFS/ME Expert Group panel member:

    http://www.mrc.ac.uk/Utilities/Decla...rest/MRC006490

    There used to be a CFS/ME Clinical & Research Network (CCRNC) for the nationwide CFS services, that has now been replaced by "BACME".

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

    In order to be considered for membership of BACME organisations have to sign up in support of the CFS services/NICE Guideline G53. Invest in ME were invited to apply for membership but rejected the offer (see Invest in ME statement on why they have chosen to reject membership of BACME: http://wp.me/p5foE-2Z2 ).

    For several years, the CCRNC had held conferences, staged collaboratively with AfME and AYME, for medical and allied health professionals working in the field of CFS. These were controversial meetings which gave platforms to biopsychosocial peddlers: Crawley, White, Chalder and other colleagues of Wessely; one year Bleijenberg presented.

    In 2009, the keynote conference speakers were Professor Mansel Aylward, Director of Unum Centre for Psychosocial and Disability Research (CPDR), University of Cardiff, who presented on "Pathways to work" and Professor Christine Heim, Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, USA, who addressed the conference on Early Adverse Experience as a Risk factor for CFS: A Psychobiological Perspective.

    (For 2009 and 2007 conference programmes, see: http://meagenda.wordpress.com/2009/0...09-conference/ )

    BACME has recently held its first conference at which Peter White presented.

    Conference programme 2010:

    http://meagenda.files.wordpress.com/...erenceprog.pdf

    BACME is chaired by consultant paediatrician, Dr Esther Crawley (lead researcher, Lightning Process pilot study in children). Assistant Chair is Alison Wearden PhD, CPsychol (lead researcher, FINE Trial who also has a seat on the SMILE Lightning Process pilot study Expert Advisory Group)....
    -------------------------------------
    Anglia ME Action (UK).
    PERMISSION TO REPOST
    -MESSAGE-ENDS-
     
  2. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    24
    Victoria, Australia
    Too long, too confusing and sounds too political to me. Gave up reading this terribly long post after two very confusing and repetitive paragraphs!
     
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,516
    Short version: Don't send abusive e-mails to people for posting the views of others.

    At the same time - 'abusive e-mails' is a pretty vague term that can be used to just emphasise what a victim you are for having others disagree with you. But maybe he was getting genuinely nasty stuff.

    Either way, I don't think it's worth getting too worked up about XMRV stuff at the moment. With XMRV, we're able to let the scientific process get on with it - prejudices and prior expectations may affect results for some studies, but if there is a link between XMRV and CFS I'm pretty confident it will be found... and there is a danger that there's no link and that current activism attacking anyone who claims this is just going to hurt us in the future. Current activism should be more focused upon trying to get CFS treated fairly even if XMRV doesn't work out imo.

    XMRV is the sort of solid lead of the sort that science is good at examining. It's when there's nothing so solid to go on that we can end up in trouble, and when activism can affect things one way or the other.
     

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