The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Pinching at the MEopathy Association - XMRV has no role in ME/CFS...

Discussion in 'Action Alerts and Advocacy' started by Anglia ME Action (UK), Dec 22, 2010.

  1. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    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-...overage-of-retrovirology-on-xmrv/486793716796
    http://www.wpinstitute.org/index.html
    http://merutt.wordpress.com/2010/12...rleir-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].


    Article on the MEA Website today:

    XMRV update: comment from Professor Tony Pinching
    by tonybritton on December 21, 2010
    http://www.meassociation.org.uk/?p=3581

    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.

    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. This type of virus is especially liable to be found as a result of inadvertent laboratory contamination, and there is now direct evidence to support this explanation. There is an ongoing study in which samples from the same patients are sent to multiple laboratories, and this together with the latest reports may conclude the matter.

    There is currently no basis for using tests or treatment based on the initial findings in clinical practise. The original findings raised high expectations, but the hopes now seem to have been dashed. We have been here many times before.

    Professor Greg Towers, an author of one of the recent studies comments appropriately in a press release. Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome. All our evidence shows that the sequences from the virus genome in cell culture have contaminated human chronic fatigue syndrome and prostate cancer samples. It is vital to understand that we are not saying chronic fatigue syndrome does not have a virus cause we cannot answer that yet but we know it is not this virus causing it.

    The main benefit of the episode has been an increased awareness of the need for more substantial understanding of the biological basis for CFS/ME, and for better tests and treatments. For the CFS/ME community, the strong health warning must be not to rush to embrace new research findings until they have been confirmed.

    Professor Anthony J Pinching

    21 December 2010

    Prof Pinching is a medical advisor to the Sussex & Kent ME/CFS Society

    www.measussex.org.uk

    -ENDS-
     
  2. Wonko

    Wonko Senior Member

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    The other side.
    what were these "informed observers" informed of, and who informed them?
    did anyone bother to teach these informed observers simple logic?
    why are these people claiming to represent me when they clearly dont and what can I do about this given the UK legal systems views on tar and feathering?
    surely claiming to represent someones views, against their wishes, and making statements which are untrue regarding said views is a criminal act?
     
  3. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    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=3548
    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 also known as myalgic encephalomyelitis (ME) 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 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.

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

    It is vital to understand that we are not saying chronic fatigue syndrome does not have a virus cause we cannot answer that yet but we know it is not this virus causing it.

    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.

    When we compare viral genomes, we see signs of their history, of how far they have travelled in space or time, says Dr Stphane Hu, Post Doctoral Researcher at UCL. We 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.

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

    Together the results demonstrate that XMRV does not cause chronic fatigue syndrome or prostate cancer in these cases. The teams 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.

    Increasingly, we are using DNA-based methods to accelerate our understanding of the role of pathogens in disease, explains Professor Paul Kellam, Virus Genomics group leader from the Wellcome Trust Sanger Institute. These will drive our understanding of infection, but we must 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."

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

    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-...overage-of-retrovirology-on-xmrv/486793716796
    http://www.wpinstitute.org/index.html
    http://merutt.wordpress.com/2010/12...rleir-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].

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

    - MESSAGE ENDS -
     
  4. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    UK
    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

    Pinching’s Perception? by Eileen Marshall Margaret Williams, 20th January 2006


    See also: http://www.theoneclickgroup.co.uk/news.php?start=1280&end=1300&view=yes&id=1424

    Professor Anthony Pinching on ME/CFS

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

    http://www.theoneclickgroup.co.uk/documents/media/Prescribers Journal 2000 Vol. 40 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/DeclarationsofInterest/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/...-network-collaborative-ccrnc-2009-conference/ )

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

    Conference programme 2010:

    http://meagenda.files.wordpress.com/2010/09/bacme2010conferenceprog.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).


    I was curious to know the history of this opinion piece authored by Prof Pinching and published by the ME Assocaition, hot on the heels of the publication of the Retrovirology papers. It doesn't seem to have been published elsewhere - not that I could find, and one might assume, therefore, that it was not taken from a press release issued by any organisation or body with which Prof Pinching is associated in a professional capacity.

    The opinion piece that the MEA published is signed:

    "Prof Pinching is a medical advisor to the Sussex & Kent ME/CFS Society www.measussex.org.uk"

    The Sussex & Kent ME/CFS Society is a large support group chaired by Colin Barton who recently announced that his organisation, which is registered with the Charity Commission, has become a member of BACME. (It's not know whether this decision to join BACME was taken by the committee or following consultation with the group's membership.)

    I have written to Neil Riley, Chair, ME Association Board of Trustees, and asked him to clarify whether this statement of Prof Pinching's was initiated by the Sussex & Kent ME/CFS Society support group and circulated on behalf of the group, or whether Prof Pinching issued the statement, himself, in a personal capacity, and approached the ME Association for a platform.

    One of the reasons I have asked for clarification is because of Mr Barton's organisation's association with BACME (fundamentally a propaganda organ for the CFS Clinics/NICE G53/ PACE Trial).

    Will Mr Barton be taking on the role of disseminator of information/propaganda for BACME, much as he has functioned, in the past, as a disseminator of information on behalf of AfME and as a media ambassador for the promotion of the CFS clinics?

    BACME has a constitution which members have to sign up to which includes the following-

    2.2 Objectives

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



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



    4. The Executive

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




    I'll update if I receive a response from Mr Riley that clarifies the history and origination of this statement by Prof Pinching.


    ETA: This evening, Dr Charles Shepherd has issued this statement via the Co-Cure mailing list:

    Friday, December 24, 2010 1:33 PM
    [CO-CURE] ACT: MEA coverage of the latest research on XMRV


    in which he writes:

    "...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..."


    which seems to answer the questions I had raised with Mr Riley.

    Dr Shepherd's full statement can be read here:

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1012d&L=co-cure&T=0&F=&S=&P=2236

    Prof Pinching's statement here: http://www.meassociation.org.uk/?p=3581


    Related information:


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

    Questions raised over training role of new body for ME/CFS professionals
    24 June 2010

    Parliamentarians should examine role of new NHS training forum for ME/CFS
    25 March 2010


    Suzy
     
  5. Desdinova

    Desdinova Senior Member

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    USA
    Well at least this show’s where his elegancies lie. Sadly I see the powers that be of various world governments massing against us while we seemingly wait prim and proper like for an honest non biased try at replication. One using the same protocol or one mutually agreed upon. I don't think that we will ever get one of these by the government labs. The closest that we will get is what we've already gotten which is the one that Dr. Alter did the one that got held up and then released.

    Being barred from giving blood for your own protection. Experts sworn to secrecy and Secret Files sealed and banned from the public for 70 years. No, No, No they’re right there’s nothing to XMRV, there’s nothing sinister surrounding or involved with CFS/ME in fact there’s nothing to it at all.
     

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