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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Does XMRV cause ME?

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

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Also, what type of organisation publishes material authored only in the name of "Gerwyn"?

    Is the entire world expected to know who Gerwyn is - like Madonna or Beckham?

    http://www.imeassoc.com/Gerwyn_s_Comments.html

    Surely if Gerwyn's material is worthy of publication on the IMEA website he should be prepared to have a full name put to it?
     
  2. SOC

    SOC Senior Member

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    That's all well and good when people are not presenting themselves as authorities. I, and I expect most of us, don't have sufficient background in retrovirology or even virology to judge every statement of scientific fact solely on its merits. I have to consider both the content and the source here, as I do in the rest of life.

    I think there is a lot of wisdom on these forums and some excellent critical thinking which benefits us all. However, when someone casts him/herself as an authority on a scientific subject, they should be an authority. They should state opinion as opinion, not fact, as should we all.

    What are "the individuals themselves" in the forum context if not the words they say, the actions they take and the "facts" they present?

    I, for one, never suggested judging people "solely by their qualifications". How they speak, how they act, and the accuracy of the information I do fully understand impacts how I evaluate the information people provide when I don't fully understand it.

    So no, I don't let any old surgeon operate on me -- I check up on them. I don't assume they are excellent surgeons just because they have a piece of paper. However, I also don't ever schedule surgery with a nurse. Qualifications do matter -- they just aren't everything.

    This is not a black/white, yes/no situation. I don't advocate throwing out the baby with the bathwater. Even those whose veracity I doubt based on my personal knowledge of a small topic have some useful and interesting things to say.

    That said, when people insist on presenting themselves as knowledgeable authorities on abstruse subjects, I expect evidence of that authority before I take their statements as fact.
     
  3. Bob

    Bob

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    Hi sickofcfs,
    I wasn't having a dig at you, so I hope it didn't come across like that...
    I was just making a general comment, based on this thread.

    Fair enough point... I guess we do have to look at the whole picture... But I'm not sure if someone's qualifications tell us anything much about them, or the accuracy of their insight into a subject, except in certain specific cases.

    Agreed. I don't think it's helpful when people state that their qualifications make them an authority on a subject.

    I just meant that discussions or statements about people's qualifications can be unhelpful, in my opinion, whether they come from the person with the qualifications, or from anyone else.

    I agree with many of the points you've made.
    But I don't think that someone's qualifications, or authority, means that we should take their statements as fact (Although I don't think that's what you mean anyway.) In relation to ME research, I think that qualifications are pretty irrelevant.
    Like you say, XMRV research is not a black/white situation, so there might just not be any actual definite answers to certain questions yet, however much some people want to make us believe that there are.
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Apologies, insearchof but I've hitherto missed your query.

    Off the top of my head, I can't recall whether I've seen Dr Shepherd commenting publicly in support of the Towers/Wellcome paper (Dr Shepherd has only very recently been posting on the MEA's Facebook site and on the News pages of the MEA's main website, but he also comments on the UK Yahoo Group, LocalME, which is a non public group for reps of regional and "local" UK ME and CFS support groups and selected others, but I am no longer a selected other on that list, so can't say), but the MEA did give a platform to this statement by Prof Pinching. (It was later clarified that Prof Pinching had issued this on behalf of the Sussex group for which he is Medical Adviser and had not been approached by the MEA for a position statement.)


    http://www.meassociation.org.uk/?p=3581

    XMRV update: comment from Professor Tony Pinching

    [posted 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.

    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
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    So is Gethin Price, Director of IMEA (not the British comedian), prepared to be transparent?

    Who will be representing IMEA if they secure a meeting with Dr Unger of the CDC. Perhaps Ana will clarify for us? Though I note that having initiated the thread, Ana now seems to have withdrawn from participation.
     
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    This point should probably be raised in the other Ana initiated thread (the one for the latest notice from IMEA):

    ETA: I have raised the following here in this thread:

    http://forums.aboutmecfs.org/showth...E.-Association&p=166554&viewfull=1#post166554


    One of the "Goals" within the Mission Statement that IMEA circulated earlier this month is:

    * Until science provides us with a better name, we recommend the use of the name "Myalgic Encephalomyelitis" (M.E.) for this illness and elimination of the term "Chronic Fatigue Syndrome" (CFS)


    But in its announcement that IMEA is hoping to secure a meeting with Dr Unger (CDC), one of the suggested topics that might be raised is:

    * Does the CDC believe that it is right to reclassify CFS in ICD-10CM? And if no, what are they doing to actively stop the reclassification?


    For a start, it needs to be understood that is not the case that CFS is being "reclassifed" within ICD-10-CM.

    It is the case that for ICD-10-CM (the US specific "Clinical Modification" of ICD-10 that the WHO has authorized US agencies to adapt for US only use), Chronic fatigue syndrome is proposed to be retained in the R codes (which will be Chapter 18 in ICD-10-CM, under R53 Malaise and fatigue > R53.82 Chronic fatigue syndrome NOS;

    whereas it is being proposed that for ICD-10-CM, the US will be adopt for the first time, the coding of PVFS and (B)ME in Chapter 6 Diseases of the nervous system, at G93.3, in line with the international version of WHO's ICD-10.

    So the retention of CFS in the Symptoms and signs and ill-defined R codes chapter for ICD-10-CM is a legacy from ICD-9-CM, which itself, was a US specific "Clinical Modification" of the long since retired WHO's international ICD-9.


    Secondly, there appears to be a disparity between the call for

    "...elimination of the term "Chronic Fatigue Syndrome"

    and

    * Does the CDC believe that it is right to reclassify CFS in ICD-10CM? And if no, what are they doing to actively stop the reclassification?


    What is IMEA's position on the long standing proposals for coding PVFS, ME and CFS for ICD-10-CM?

    For I do not see how, on the one hand, IMEA could support the inclusion of CFS at G93.3, along with PVFS and ME (as it is in the Canadian ICD-10-CA and in proposals for international ICD-11) yet at the same time call for the elimination of the term "CFS".

    Am I missing something? Or is IMEA pitching itself at both the "split CFS from ME and to hell with the collateral damage" camp and the "until the science has it sorted, it's safer for patients with a CFS Dx or who may still be given a Dx of CFS in the future, despite the new and unfamiliar ME coding, if CFS is coded along with PVFS and ME at G93.3, and not left to rot in the dustbin that is the R codes" camp?

    Suzy
     
  7. Ecoclimber

    Ecoclimber Senior Member

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    Where did you obtain this information on Gerwyn? The only statement that I saw was his posting that he only has a graduate degree in psychology before he became sick. He refuses to identify himself, goes by various aliases and other assumed identities. Can you verify your information concerning Gerwyn. Otherwise, it would be just hearsay or conjecture at this point. Otherwise, the only evidence to date, is that he is a layperson with no scientific background. So it would be appreciated if you could verify your information and if not you should make adjustments to your post concerning Gerwyn's background.

    Thanks you,
    Eco
     
  8. Grape Funk

    Grape Funk Senior Member

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    With all due respect Eco, you have conveyed some serious thoughts, not facts, upon blogs, forums and other internet sources in abundance throughout the ME/CFS empire. It seems you have a quarrel with a mans opinion rather than the scientifically proven facts. It is every human beings right to have an opinion, including yours. With this being stated, nobody needs defamation of person's name when we all have subjective views on a certain criteria. Many others are incognito, as you choose to be. Many forum members and organizations throughout the community of ME/CFS have given blows to the head of many anti XMRV research. This is fact. But in essence, their right. I have, and many others on this specific forum have seen you take shots at many scientists, and people here, rather than the data itself. I do believe we all should stick to the valid points and scientific evidence, rather than pointing the finger at persons background or ridiculing beliefs.

    Here is evidence of what i mean in the first sentence: directly from a quote of yours off another blog

    http://pipeline.corante.com/archives/2011/01/11/xmrv_its_ugly_but_thats_science.php

    62. Eco on January 21, 2011 3:23 PM writes...
    "I am astounding and quite impressed on ERV's analysis of the situation. She always brings such incredible insight and assessment to the issue of XMRV. I am sure the University of Oklahoma faculty staff is proud to have her as one of their graduate students.

    With that being said, I wish our esteem colleague ERV or Abbie 0f Erv Scientific Blog post would invest herself into the FDA Blood Products Advisory Committee so as to save humanity and taxpayers dollars from being wasted for investigating a non existent virus at worse or a contaminate at best. Please ERV with your eminent knowledge on qPCR techniques that you stated in one of your blogs that even an graduate student should know the basic techniques of using.

    Please inform and teach the following doctors on the basic techniques of qPCR assays and contamination as apparently they lack the fundamental knowledge, education and skill set behind the science on this technique.
    Dr. Coffin, Dr. Alter, Maureen Hanson,Dr. Celso Bianco, Dr. Hollinger, Dr. Judy Mikovits, Dr. Jonathan Stoye, Dr.Francois Villinger, Dr.Shyh-Ching Lo, Dr. Racel Bagni, Dr. Epstein, Dr. Nelson, Dr. Klimas, Dr. Demetriades, Dr. Gylnn, Dr. Monroe, Dr. Bianco, Dr. Katz, Dr. Kleiman, as well as such organizations as the NIH, FDA, CDC, NCI, The American Red Cross, & ABBA.

    As well as outside the organization. Dr. Singh, Dr. Dusty Miller, Dr.Vincent Racaniello, Dr. Jolicoeur, Dr. Houghton, Dr. Lorne Tyrrell, Dr. Eleanor Stein, Dr. Silverman, Dr. Klien, Dr. Ruscetti, etc.

    If you could point them to one of your published peer review articles on the subject, I am sure they will be most indebted to you explanation why they are wasting our taxpayer's money on the subject. Please, Abbie, set them straight on this issue as we need to fund more worthwhile research projects.
    "
     
  9. Hope123

    Hope123 Senior Member

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    Bob, I would not have questioned Gerwyn's qualifications in the beginning of this thread except he has questioned others vehemently and chased down their credentials as well as attacking people personally. I think most people are aware that everything put on the net should be questioned, especially when the source is unclear, but he set himself up for questioning. That is partly why, I believe, he was booted off this forum -- I have no actual hand in that nor did I recommend the boot but I can understand why it happened.

    I have a degree in biology from years back (and other degrees on top of that) but the stuff we're talking about is complex. It's fine for people to discuss the topic and question the researchers but other people have not put themselves forth as an authority (even Cort notes occasionally in his stuff that he is not a trained researcher in the area he's writing about) nor attacked researchers, other forum members, etc. personally and consistently. I have stayed out of the XMRV talks most of the time because that is not my area and I also recognize that reading about a topic never replaces actual experience working on something, which tempers what you read in books.

    Years ago, I was part of a bioengineering group where there was a mix of PhDs, MDs, engineers (the head was an engineer), and techs. People in the group respected each others' knowledge; the engineers wouldn't pretend to be biologists and the biologists wouldn't pretend to be engineers although the engineers probably knew more about biology than the average engineer and vice versa.
     
  10. Hope123

    Hope123 Senior Member

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    I think this needs to be repeated. Why dredge up people's quotes from other forums and post it here when the quote is not particularly productive except to attack someone? Re-posting informative or helpful stuff from other forums I understand.

    [See post 48 above me for another example.]
     
  11. Grape Funk

    Grape Funk Senior Member

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    Actually, my post had no intention to "attack someone". It was indeed to show there are most definitely two side of the coin on (almost) all perspectives in life.
     
  12. SOC

    SOC Senior Member

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    Fair enough, Bob. We're good. :)
     
  13. Ecoclimber

    Ecoclimber Senior Member

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    You don't have a dog in this fight Grape Funk so stay out of it.

    When somebody makes a statement about the creditionals of someone, I would like clarification by that person not you Grape Funk. This does not involve you so stay out of it! It is certainly infamously known how the other forums as well as this one which constantly harrassed not only me but Dr. Miller for our qualifications and would not communicate with us unless we provide evidence of who we are, while at the same time refused to give out any information concerning their identity when communicating with Dr. Miller even though they critique and criticise every researcher out there other than the WPI and make scientific analysis on the research of others without one scintilla of evidence as to whether they are qualified to make such an analysis.

    Furthermore, my statement about ERV was tongue and check or put it in another way sarcastic, I was not praising ERV, who is just a graduate student, but criticizing her lack of experience to properly analyze research by such esteem scientists with years of experience in scientific research by making a statement that these researchers were incapable of conducting a simple QPCR test. So don't take my statement out of context and also don't reply to messages that are not directed at you. So keep out of this Grape Funk, it doesn't concern you!
    Eco
     
  14. SOC

    SOC Senior Member

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    My comments were in reference to the statements I quoted. I apologize if it was confusing. My point was that Gerwyn's self-reported experience is remarkably convenient for someone who wants to claim authority in the variety of discussions we have here. I neither claim (nor believe) that Gerwyn has all the experience he seems to have reported.
     
  15. Kina

    Kina Moderation Team Lead

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    How about Gethin Price is Gerwyn Morris.

    Proof may be here.

    The previous was written by Gerwyn Morris -- http://blogg.aftonbladet.se/sjukhaveri/2011/03/cohen-2011

    The next is written by Gethin Price -- http://news.sciencemag.org/sciencenow/2011/03/fresh-doubts-about-connection-be.html?ref=hp

    Identical except that a member of the me/cfs forum edited the first one for him because he is notoriously bad at writing, punctuation, and grammar.
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Thank you kjm.

    Supposing the IMEA's "Gethin Price" were Gerwyn Morris.

    We do not know whether Gerwyn posts under his own name, anyway.

    We do not know whether the name "Gethin Price" is a real name.

    I would expect transparency from anyone who promotes themselves as a "Director" of an "International ME Association" that is claiming a mandate to represent patients' interests at meetings.


    So let's give IMEA the benefit of the doubt and assume, until told otherwise, that Gethin Price is a real person.

    The website of IMEA has a page devoted to quotes from "Gerwyn" - not "Gerwyn Morris" but "Gerwyn".

    But it does not clarify whether "Gerwyn" is the pen name under which IMEA "Director" "Gethin Price" publishes.

    So if someone takes issue with the content or accuracy of "Gerwyn's" material that is up on the IMEA site (or subsequently republished elsewhere) with whom does one take this up?

    With "Gerwyn Morris" or with "Gerwyn" or with "Gethin Price"?

    There are no contact details for the "Directors" of IMEA on the website or the notices, other than Patricia Carter.

    As I've already set out, the only names on the site are those of the "CEO", Carter and quotes attributed to "Gerwyn".

    You see how complicated things get once you become involved in a patient organisation?


    This is beginning to look like a ragtag set up

    It is evident that this "organisation" does not have a good understanding, for example, of the history and status of CDC/HHS/NCHS proposals for the US specific ICD-10-CM.

    There may be a conflict of position if IMEA is calling for the "eradication" of the term CFS but attempts to discuss with CDC the issue of moving CFS from the R code chapter (Symptoms and signs, and ill-defined conditions) to the Chapter 6 G codes, where ICD-10-CM proposes to code PVFS and (B)ME.

    [Current proposals for the US "Clinical Modification" of ICD-10, which will be known as "ICD-10-CM", are to retain CFS in the R codes and code for "Chronic fatigue syndrome NOS" in Chapter 18 "Symptoms and signs" under R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified > Chronic fatigue syndrome NOS but to classify PVFS and (B)ME in Chapter 6 Diseases of the nervous system, under G93 Disorders of brain > G93.3 with the specific Exclusion of "chronic fatigue syndrome NOS (R53.82)". This would place ICD-10-CM out of line with the existing Canadian "Clinical Modification", ICD-10-CA, where all three terms are classified in Chapter 6 at G93.3, and with proposals for international ICD-11, where all three terms are proposed to be classified within Chapter 6.]


    One questions whether this "organisation" of scattered across the globe "Directors" can be considered competent to represent the interests of patients.


    I note from Co-Cure, today, further concerns about this "organisation":

    From: "Pat Sonnett"
    To: <CO-CURE@LISTSERV.NODAK.EDU>
    Sent: Tuesday, March 22, 2011 2:55 PM
    Subject: [CO-CURE] ACT: Write to the IMEA


    The International ME Association (IMEA) is in the process of scheduling
    a meeting with Dr. Elizabeth Unger at the CDC and is soliciting patient
    input regarding questions to be answered during the meeting. One of the
    questions posted on the site at

    www.imeassoc.com/IMEA_to_meet_with_CDC.html includes the sentence

    "Patients do not want the CAA biobank samples used in studies.

    Regardless of how one feels about the CAA, its BioBank is composed of
    ME/CFS patient samples from Dr. Lucinda Bateman, Dr. Stephen Gluckman,
    Dr. Nancy Klimas and Dr. Charles Lapp, highly respected pioneers in the
    ME/CFS field. These patient samples could provide valuable information
    for research and to specifically ask that they not be used would be a
    disservice to the ME/CFS community. We all want to get well and
    excluding these samples would only serve to impede our progress.

    Please write to the IMEA at info@imeassoc.com and ask that the statement

    "Patients do not want the CAA biobank samples used in studies." be
    removed from the questions/statements to Dr. Unger and the CDC.

    Pat Sonnett

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

    Suzy
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I am advised that there are now bios published on

    http://www.imeassoc.com/Page_2.html

    There is no bio for "Gethin Price".


    I note that the "CEO" states that:

    "The other pressing issue is the USA's diagnostic manual, ICD-10CM. Though there is disagreement about the relationship of CFS and ME, the proposed reclassification of CFS to "R53.82 Chronic Fatigue, unspecified" cannot be allowed to happen. This change would also have ramifications for the WHO's ICD-11, and the world wide population with this disease."

    I have already set out that for the forthcoming US "Clinical Modification", CFS is not being "reclassified" it is being proposed to retain it in the R codes as a legacy from ICD-9-CM.


    I should also like to know what evidence Ms Gunn has for her statement

    "...This change would also have ramifications for the WHO's ICD-11 and the world wide population with this disease..."


    ICD-10-CM is being developed from ICD-10 by US agencies. These agencies are authorised by WHO Geneva to develop an adaptation of ICD-10 for specific US usage called a "Clinical Modification" of ICD. Canada and Germany, and a few other countries, are also authorised by the WHO to adapt "Clinical Modifications" of ICD.

    ICD-11 is being developed independently of ICD-10-CM by an international Revision Steering Group that is accountable to WHO, Geneva.

    Proposals for ICD-11 are that all three terms are classified within Chapter 6 Diseases of the nervous system, where CFS is proposed as an ICD Title entity with a Definition and other descriptive "Content Model" parameters and with (B)ME specified as an Inclusion term to Chronc fatigue syndrome[1].

    So I shall ask her on what evidence she bases her website statement.


    [1] PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform: http://wp.me/pKrrB-KK

    Suzy
     
  18. Ecoclimber

    Ecoclimber Senior Member

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  19. Dreambirdie

    Dreambirdie work in progress

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    OMG! What a drama! I hate to say it, but this is EXACTLY the kind of thing that will help perpetuate the image of CFS patients as psych cases.

    It would be funny, if it wasn't so horribly pathetic... :(:(:(
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    A bio has now been added to the IMEA site for "Gethin Price":

    Gethin Price

    Gethin Price suffers from M.E. Although he has been educated as a chemist, he is not able to work in his field due to the illness. He is grateful to his family and friends for their patience and understanding of the limitations caused by his illness. He is not happy with the lack of treatment for M.E. patients in the United Kingdom and getting better treatment is one of his goals in working with IMEA.
     

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