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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Does XMRV cause ME?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Ana, Mar 13, 2011.

  1. insearchof

    insearchof Senior Member

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    Can someone tell me:

    1. where this quote attributed to Charles Sheperd came from and

    2. whether he qualified the above remark by making mention of the fact that there have been no scientific studies to date that have directly considered whether XMRV is in fact the cause of CFS?
     
  2. Ian McLachlan

    Ian McLachlan

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    <So simply stated, and oh so true! Thanks fla!>

    It is not quite that simple especially when in a representative position which by its very nature spans a political and medical boundary.
     
  3. insearchof

    insearchof Senior Member

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    All the more reason, why greater care and responsibility is required of such a person in the utterance of public statements.
     
  4. Ian McLachlan

    Ian McLachlan

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    Exactly. Fully agree.
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    "I am eating my pudding."


    In answer to your first question, insearchof:

    The quote comes from a thread on the ME Association's Facebook Wall.
    The thread was started by the MEA's Tony Britton on 9 March.
    The thread received over 125 comments, but Dr Ellen Goudsmit has removed a number of her own comments, so the integrity of the thread has been partially compromised.

    In response to the 9 March 2011 Facebook Wall posting:

    Fresh Doubts About Connection Between Mouse Virus and Human Disease - ScienceNOW news.sciencemag.org

    Dr Shepherd wrote:

    http://www.facebook.com/permalink.php?story_fbid=192110800828755&id=68630803256

    Charles Shepherd

    Having carefully considered all the published evidence - good and bad - since October 2009, and been in regular contact with virologists and retrovirologists, my gut feeling is that XMRV is not going to be the/a cause of ME/CFS and that antiretroviral drugs are not therefore the answer.

    Results from further research studies will appear over the coming months, and it may turn out that XMRV - whatever its status - is found more commonly in people with ME/CFS. But I cannot see this finding turning into a diagnostic marker or test.

    It's still too early to send the jury out on XMRV but I hope we can do so by the end of the year.
    March 10 at 8:30am


    He went on to post:

    Charles Shepherd
    Paul - if you look at what the MEA Ramsay Research Fund has been funding, is funding, and is intending to fund you will see that we take a very broad approach to what needs to be done in the way of biomedical research.

    This obviously includes endocrinology, genomics, immunology, neurology, muscle studies, virology and treatment trials.

    Our immediate priority is to get the biobank (blood samples) into operation as soon a possible - something that will cost in the region of 180K. The tissue and brain bank is another priority. Good quality proposals relating to XMRV are very welcome as well.
    March 10 at 11:47am


    Charles Shepherd
    MEA Ramsay Research Fund information:
    http://www.meassociation.org.uk/?page_id=1086
    March 10 at 11:48am


    Charles Shepherd
    John - you are entitled to your opinion but I can assure you that nobody has misled me.

    I make my mind up after reading all the published papers and talking/listening to a variety of people in any particular area of research in the case of XMRV this has included attending two lectures given by Dr Mikovits) that needs to be pursued.
    March 10 at 11:59am


    Charles Shepherd
    Chris - Post mortem studies are a vital part of any research portfolio that is looking for the cause of a neurological (ie brain and nervous system) disease.

    We have already demonstrated that you can find potentially important information - eg dorsal root ganglionitis - about the neuropathology of ME/CFS from examining tissues that could only be obtained from people who have sadly died.

    And patient feedback to the feasibility study indicates that people with ME/CFS are very keen to donate brain, muscle and other tissue after death.

    More information on the work in progress, if you want to follow this up:
    http://www.meassociation.org.uk/?p=3765
    March 10 at 1:15pm


    Charles Shepherd
    Richard -

    I very rarely see or hear about partners of people developing ME/CFS and I am not aware of any research that has been done in this area. So I do not think that ME/CFS can be transmitted by a sexual route - as can obviously occur with retroviral infections like HIV.

    The MEA has not funded any research to look at the incidence of ME/CFS in family members but there is a limited amount of information available to support the view that it can be more common in some families. The explanation remains uncertain but generic predisposition may well be one factor.
    March 10 at 1:21pm


    Charles Shepherd
    Paul - I fully agree that we need to fund research into muscle function, pain and the possibility that the body's immune response through the production of cytokines may be causing some of these muscle symptoms. This is why we are funding Professor Julia Newton to carry out muscle research using MRS.

    Not sure what you mean by 'peripheral elements of a neurological disease process' ??

    That's it for now - I must go and do some work!
    March 10 at 1:25pm


    Charles Shepherd
    More on research into muscle abnormalities in ME/CFS:

    http://www.meassociation.org.uk/?p=975
    March 10 at 1:28pm


    Charles Shepherd
    Jo -

    If people with ME/CFS are dying, and want to donate their bodies to medical research (as was the case with Lynn Gilderdale) then surely there ought to be a proper facility in place to collect, store and use this tissue.

    At present, the process I have to go through when notified of a death is far from satisfactory - hence our attempt to set up a proper ME/CFS brain bank and donor database.

    This is not an academic exercise - we need to know much more anout the neuropathology of ME/CFS and having brain tissue to look at under the microscope etc could well lead to new forms of treatment.

    One interesting abnormality which has already been found, that could explain the peripheral neuropathy symptoms that some people experience, is dorsal root ganglionitis.
    March 11 at 7:44am


    Charles Shepherd
    Laurence

    Constructive criticism welcome but no need to be rude.

    I've been involved in the clinical and research side of this illness for almost 30 years. I have a vast library of information with all the key research papers from the the pas...t 60+ years and I've read most of them.

    Yes, a large number of papers have been published but your figure (5,000) is a gross exaggeration when it comes to original and robust biomedical research in reputable peer review journals.

    You are clearly unaware of the research section I prepare for ME/CFS/PVFS - An Exploration of the Key Clinical Issues . This MEA booklet is fully revised each year (current issue = January 2011) and provides referenced information to about 250 of the most important research papers, including those on XMRV.

    More info here: http://www.meassociation.org.uk/?p=4038
    March 11 at 1:32pm


    Charles Shepherd
    And if you want to look at all the recent research paper abstracts from 2004 onwards, this is the summary that the MRC Expert Group prepared for the ME/CFS Research Workshop we organised in November 2009:

    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509

    Warning: it is 351 pages long.
    March 11 at 1:43pm


    Charles Shepherd
    John

    Firstly, I am not a Patron of the MEA.

    I am a trustee and honorary (ie unpaid) medical adviser.

    The two lectures I attended were the ones you refer to, where I very briefly met Dr M over lunch. And yes - I will be attending the conference again in May. If Dr M is available I will certainly have a word with her because I believe in talking to a whole spectrum of medical and scientific opinion on all aspects of this illness.

    I hope this answers your Jeremy Paxman style questions.
    March 11 at 8:51pm

    Dr Shepherd then pulled out of this thread.


    One of the comments from others participating in this thread was this, but you will have to go to:

    http://www.facebook.com/permalink.php?story_fbid=192110800828755&id=68630803256

    to see all the 125 comments that remain:


    Flex Madeupsurname
    Dr Shepherd you stated earlier that you talk to many virologists scientists and retro virologists. Please can you inform us when you consulted with Harvey Alter, Lo, Ila Singh, Kenny De Meirlier and Judy Mikovits. They have a wealth of scientific evidence under their belts on the subject of XMRV and MLVs. They also consider the two viruses to be one and the same in the sense that they are a new HGRV found in 70 -80% of persons with ME using Fukada and CCC.

    They do not rely on or publish "gut "feelings" when dealing in scientific matters.

    You claim you spoke to Judy Briefly over lunch. I feel this is somewhat a misrepresentation as the event you are talking about was the Invest in ME conference last year. The whole conference, some 400 attendees where on lunch, and you where asked by a well known advocate to come and meet Judy Mikovits. It was not of your own accord.

    Your immediate response was, and I quote, "I am eating my pudding". I know this because I was standing right there.

    Are the scientists you talk of who allow you to summarise your gut feelings for us Johnathon Stoye and Myra Mclure and others whom have published negative papers?

    If they are not or they are not the only ones could you tell us which scientists it was who lead you to have such gut instincts.
    March 13 at 10:45pm
     
  6. garcia

    garcia Aristocrat Extraordinaire

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    Those of us on this side of the pond with more extensive dealings with CS unfortunately know different. CS has done some good things from time to time, but he is woefully inadequate as any kind of advocate as the above summary posted by Suzy Chapman shows.

    To him eating his pudding was more important than meeting the discoverer of possibly the greatest scientific breakthrough in ME/CFS to date.

    We deserve so much better.
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Apologies for not posting the entire MEA Facebook Wall thread, but it is long. Additionally, Dr Ellen Goudsmit (who has now stood down as a temporary adviser to the MEA on psychological matters in relation to the PACE Trial results), specifically requests that her comments and posts on Facebook Walls are not republished elsewhere.

    The MEA's Facebook site is a public site and should be visible to those without Facebook membership:

    Fresh Doubts About Connection Between Mouse Virus and Human Disease - ScienceNOW:

    http://www.facebook.com/permalink.php?story_fbid=192110800828755&id=68630803256
     
  8. insearchof

    insearchof Senior Member

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    Hi Suzy

    ThanK you for going to so much trouble. Flexmadeupsurnames comment was interesting and tempted me to made a remark about guts, pudding and comments, but I shall be good :)

    I have to say that 125 comment thread, the integrity of which has been compromised because of post removals, is beyond my current capacity to follow just at the moment.

    It appears to me though, that you have posted all Sheperds comments up until the point that he withdrew from the thread.

    If that is so, I cannot see any subsequent qualification to his initial statement, which would make it clear that no scientific research on XMRV as the cause of CFS has taken place. Am I correct here.?

    What is also odd about his logic is, that whilst he states a personal view based on a gut feeling ( that XMRV will not be found to be the cause of CFS) and that the jury is not out on the matter, (the matter is not settled)he still manages to conclude that antiretrovirals are not the answer! How can he reach a conclusion or answer on a matter he acknowledges is not settled? As stated previously.....premature. Or on a lighter note, is this wanting to have one's pudding and eat it too? (Sorry, couldn't resist that that very bad pun :) )

    He is certainly correct about the jury though....it's too early to send the jury out on that matter and I would go as far as stating, that the jury cannot and will never be sent out, now or at any time in the near forseeable future ...to deliberate on a non existent state of affairs (XMRV as the cause of CFS or a mere passenger virus) because that issue is not, and has never been, put up for scientific consideration.

    What is disturbing to me, is that in the context of all things said and acknowledged by him in that thread, he appears to be hoping for the impossible ( a determination on a non existent state of affairs) by the end of this year, so he can move on to, what appear to be other priorities. In other words, create a fiction (ie: that XMRV as the cause of CFS has been thoroughly examined ) and move away from this area as quickly as possible.

    If he is an objective man and has the best interests of patients at heart, why be so hopeful to see a speedy conclusion on any level ( which given the current science in this area is unrealistic) ? Why not be content with the natural progression of science in this area? Why engage in pre empting out comes and negative speculation?

    Has he come out in support of and or endorsed, the Towers /Welcome Trust study?
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    You're welcome, insearchof, and yes, I have posted all the comments made by Dr Shepherd in that thread (though not the comments to which he was replying, for which one must refer to the thread, itself.)

    Yes, you have all his comments above, before he withdrew from the thread. He has commented briefly and recently in one or two other threads on the MEA Facebook Wall in response to other postings of recent XMRV related news articles and papers, but no qualification as far as I can see.

    Quite.


    I've just checked the MEA's main website to see whether Dr Shepherd has issued a more recent update to the series of MEA updates and position statements on XMRV research, but cannot see a more recent one than that published in October 2010. I'll stand corrected, if a more recent statement to the one below has been issued on behalf of the MEA:

    http://www.meassociation.org.uk/?p=2240

    First anniversary of the Science XMRV paper: the ME Association sums up the position so far

    by tonybritton on October 7, 2010

    This MEA summary is intended to be a factual and balanced account of the current situation. It follows the story of retroviral infection (ie XMRV and MLVs) in ME/CFS over the past year and tries to answer all the common questions that are being raised...
     
  10. insearchof

    insearchof Senior Member

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    Thank you again Suzy.

    it seems you posted at the same time as I posted an edit.

    Do you ( or anyone else here) know whether he has come out in direct support of the Towers / Welcome Trust position/ paper?
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I hope both "Ana" the initiator of this thread and Gerwyn whom "Ana" quotes, will be correcting this misassumption about Dr Shepherd's status.

    Dr Shepherd is registered with the GMC as

    "Status: Registered with licence to practice.

    This doctor is not on the Specialist Register
    This doctor is not on the GP Register"


    So he should not be referred to as "a GP", "a former GP" or "a part-time GP" but as a doctor in private practice.
     
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I do hope that "Ana" is not "Wildaisy".

    Patricia Carter is a "Director" of the recently launched International ME Association (IMEA) [not to be confused with the long established UK patient organisation, the ME Association].

    "Ana" has also posted a notice circulated today announcing "IMEA to meet with CDC":

    http://forums.aboutmecfs.org/showthread.php?10723-IMEA-to-meet-with-CDC&highlight=IMEA meet CDC

    I am not at all comfortable with office holders, trustees/trustee/directors or staff of patient organisations posting on forums without transparency.

    If the UK "CEO" and the international "Directors" of IMEA are going to be posting on Phoenix Rising or on any other platforms then I hope that all of them will be doing so openly and transparently.

    Sorry to take the thread off topic, but the expectation of transparency in patient and advocacy organisations when interacting on forums or disseminating notices and statements is an important issue.

    Suzy
     
  13. Dreambirdie

    Dreambirdie work in progress

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    Me neither. Thanks for bringing attention to this.
     
  14. SOC

    SOC Senior Member

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    Gerwyn has accumulated an interesting combination of academic/professional experiences:
    almost doctorate in psychology,
    almost chartered psychologist status,
    law degree,
    degree in medical or biological sciences,
    an (apparently)extensive experience as a lab tech in a retrovirology lab

    This is certainly a most admirably designed experience for knowledgeably discussing the flaws of ME/CFS research.

    I've worked as a lab tech, trained lab techs, and supervised lab techs as a primary investigator, so I am well acquainted with the value of a good lab tech. I am also aware of their limitations.

    There is a certain type of lab tech, and fortunately they are few, that believe that because they know something of the research, they know everything. They are the living, breathing example of, "A little knowledge is a dangerous thing." They tend to be pompous, opinionated, and egotistical. They often speak with an obnoxious superiority on topics well beyond their knowledge base. Tellingly, they rarely stay in the same position very long.

    A lab tech to a senior researcher is like a nurse to a surgeon. We all know the value of a good nurse. Medicine would not function without the amazing work of millions of intelligent, dedicated nurses. But that does not mean that the nurses' knowledge, understanding, and skill set allow them to speak or act as a surgeon.

    Lab techs and nurses typically have 2-4 years of education in the field, while senior researchers and surgeons typically have 6-10 years of education in the field. That extra education does provide a much deeper understanding of the field, and more extensive experience in the subtleties of research itself.

    As for the "alleged" misunderstandings -- such misunderstandings are common lab techs, but good lab techs understand that they don't have an extensive background in the underlying science. I'll take the word of the senior researcher over those of the lab tech on issues of "underlying science" any time.
     
  15. Cloud

    Cloud Guest

    Thanks Garcia. Your right, I know very little about the man. And of course I understand the problem with one of our docs voicing a public opinion like that. And, I fully understand the purpose and need for rebuttal, critique of qualifications, and exposing propaganda. But, my response was not really about the appropriateness of CS's statement, or his qualifications, or anyone else's qualifications. It was questioning the motivation behind the initiation of this topic because much more prominent figures than CS have said the same thing (they don't believe xmrv to be it), without causing such a response in this community.
     
  16. Bob

    Bob

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    Personally, I think that conversations, about what qualifications or experience an individual has, are distracting and unhelpful.
    I judge somebody's words on their accuracy and insight, not on the qualifications that person happens to have.
    I judge evidence based on the strength of that evidence.
    I think we need to judge people's words, based on what they offer to our community, on a case by case basis.
    And I don't think we should be judging individuals, but we should be judging and analysing facts, research, the words that people say, and the actions that people take, not the individuals themselves. (Although, I do make exceptions to this when it is important to analyse somebody's motivations, i.e. Wessely and Reeves.)
    If we are going to judge people solely by their qualifications, then my old doctor would have been right, and I would still have just an "upper respiratory tract infection", and I would still be just "catastrophising", and I wouldn't have ME.

    Just my opinion.

    (I'm not directing this towards any individual - I think it applies across the board.)
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    If you go to the website of IMEA

    http://www.imeassoc.com/

    it is difficult to find any information about those who have created this new international advocacy organisation, which is already announcing that it is in the process of setting up a meeting with Dr Unger of the CDC and calling for topics for potential discussion.

    One week the idea of a new organisation was being floated on ME-CFS Forum, the next, this new org is announced. Understandably, some folk assumed that the org had been created as the public mouthpiece of ME-CFS Forum.

    But that is apparently not the case.

    It is the case that Patricia Carter is an admin for ME-CFS Forum, which is hosted by the pseudonymous Since - the forum owner previously known as CFS Since 1998. But the org was set up independently of ME-CFS Forum and without prior discussion, it appears, with the members of ME-CFS Forum, to whom it came as something of a surprise.


    I've been involved in ME activism and advocacy since mid 2002 and have UK and international contacts. But apart from Patricia Carter, who has publicly posted about her background before she became ill, none of the others are known to me, at all, including the UK CEO.

    The website gives no information, no bios, no profiles etc of any of those involved. In fact, apart from a message from the CEO and Carter's name on the website (and a page of material from Gerwyn) the names of the other Directors are not even given - though they were given in the announcement that was circulated earlier this month:

    CEO: Louise Gunn, United Kingdom

    DIRECTORS:

    Keith Baker, United States

    Patricia Carter, United States

    Robyn Erland, United States

    I. J. Pedersen, Norway

    Gethin Price, United Kingdom




    Any group of people can register a domain name, set up a website, call themselves CEOs, Directors or whatever of an organisation.

    There is nothing on the website that states whether the group intends to register as a US 501c charity org or with the UK Charity Commission (although with an income under a certain level there is no requirement in the UK to register with the Charity Commission and submit year end accounts). In the UK, charity trustees are also directors of the organisation and have legal responsibilities for how they conduct their affairs.

    There is no information about whether the Directors are Directors in the company law sense of company directors or are just giving themselves the titles of Directors and CEO.

    There is no information about how the committee is constituted and no copy of any governing document in accordance with which the org operates. There is nothing about how any donations will be handled or by whom.

    None of the above should be seen as an attack on IMEA or its objectives - these are purely statements of fact.

    If any group of people comes together, gives itself a name, creates a website, circulates a mission statement and claims a mandate to represent others at meetings then I expect to be able to establish the above from the website.

    And if I am engaging with any organisation reps or staff on forums or in the comment sections of media articles or on whatever platform then I want to know with whom I am dealing and what their responsibilities are within that org and to whom their are accountable.

    So if Ana is Patricia Carter or any other member of this organisation, then I would hope that this would be disclosed in future.

    Suzy
     
  18. Kina

    Kina Moderation Team Lead

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    Keith Baker is Bakercape -- member of mecfs forum, Robyn Erland is the user Robyn on the mecfs forum, and I believe I. J. Pedersen is hatshepsut of the mecfs forum -- hmmm.

    Wildaisy is Ana -- Wildaisy just posted the exact same post as Ana did here on ProHealth

    http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1410675

    I doubt the IMEA will get very far if they launch attacks on people like they do on the forum.
     
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Indeed, Bob, which is why I hope that Gerwyn is going to correct himself re Dr Shepherd's status as a medical professional, and that Ana will also add a correction to her reposting of Gerwyn's quote.

    Suzy
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    And Gethin Price, United Kingdom, anybody?
     

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