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An Indefatigable Debate Over Chronic Fatigue Syndrome Science Virology 2010 01 15

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shrewsbury, Jan 14, 2010.

  1. shrewsbury

    shrewsbury member

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    This just came out. I can't get the full text. Anyone?
     
  2. kim500

    kim500 Guest

    full text Science article

    (Full text - hope this isn't too much text for one post - apologies for long one)

    Science 15 January 2010:
    Vol. 327. no. 5963, pp. 254 - 255
    DOI: 10.1126/science.327.5963.254

    News of the Week
    Virology:

    An Indefatigable Debate Over Chronic Fatigue Syndrome
    Sam Kean

    Here we go again. The search for the cause of chronic fatigue syndrome, which just months ago seemed to be gaining traction, now seems likely to descend into the same confusion and acrimony that characterized it for years, as a supposed viral link to CFS published just last autumn might be unraveling.

    Many patients with CFSlong-term fatigue and other ailments that have no known biological causereport that their symptoms began after an acute viral infection, and scientists have tried many times, but never successfully, to pin CFS to viruses such as Epstein-Barr. Patients have faced skepticism for years over whether CFS is a "real" disease; a viral trigger could vindicate them and explain their nebulous symptoms.

    That's why a paper published online 8 October 2009 in Science (http://www.sciencemag.org/cgi/content/abstract/1179052) caused such a stir. A U.S. team reported finding DNA traces of a virus, XMRV, in the blood cells of two-thirds of 101 patients with CFS, compared with 4% of 218 healthy controls. Strangely, XMRV, a rodent retrovirus, had previously been implicated in an aggressive prostate cancer. No one knows how XMRV might contribute to either or both diseases, but the authors argued that the link made some sense: XMRV ravishes natural killer blood cells, which attack both tumors and cells infected by viruses.

    Other scientists thought the link dubious, criticizing the team, led by Vincent Lombardi and Judy Mikovits at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada, for not explaining enough about the demographics of their patients or the procedures to prevent contamination (Science, 9 October 2009, p. 215). Several virologists around the world practically sprinted to their labs to redo the experiments, and the discovery that a clinic associated with some people at Whittemore was selling, among other CFS services, a $650 diagnostic test for XMRV made the issue more pressing. A U.K. team already exploring the XMRVprostate cancer link won the race, submitting a paper to PLoS ONE challenging the claim on 1 December 2009. It was accepted for publication after 3 days of review.

    The British team, led by retrovirologist Myra McClure of Imperial College London, examined DNA from the blood of 186 CFS patients ranging in age from 19 to 70, with an average age of 40. Most were markedly unwell. McClure's team used a PCR machinewhich copies and amplifies scraps of DNAto search for two viral sequences, one from XMRV and the other from a closely related virus. They discovered nothing. At a press conference discussing the results, published online 6 January in PLoS ONE, McClure was blunt and confident: "If there was one copy of the virus in those samples, we would have detected it."

    This null result prompts the question of whatif anythingwas wrong with the original paper. The PLoS ONE authors seem to suggest that contamination was at fault, stating that they were careful to work in labs that had never handled XMRV and use PCR machines that analyze no mouse tissues. But McClure says her group merely wanted to make that explicit, not accuse anyone.

    The U.S. team followed the same procedures, retorts Lombardi, a biochemist. He also expressed bewilderment that the McClure group didn't search its CFS samples for the same DNA sequence as his team had, raising the possibility that they had different results because they searched for different things. The McClure team, however, looked for not only an XMRV sequence but also a sequence in a closely related virus, MLV. That MLV sequence, highly conserved among viruses of its class, would presumably have been found if XMRV was present, they said.

    One distinct possibility, says John Coffin, a microbiologist at Tufts University in Boston who studies retroviruses and wrote a separate analysis for Science when the original paper was published (http://www.sciencemag.org/cgi/content/short/1181349), is that both papers are right. He called the PLoS ONE paper too "preliminary" to settle the debate and said XMRV could show more genetic variety, and thus be harder to detect, than anyone assumed. It's also possible that distinct strains of XMRV appear in different parts of the world, as do the retroviruses HIV and HTLV (a leukemia virus). Intriguingly, although research teams in the United States have linked XMRV to prostate cancer, multiple teams in Germany and Ireland have failed to find a connection.

    Coffin says one more possibility, raised by many scientists, is that CFS is actually a suite of diseases that present the same symptoms and so might have many causes. Lombardi agrees. "It's nave to think that everyone with chronic fatigue has the same etiology. There's probably going to be a subset of people with CFS that have XMRV, and it will probably end up being classified as XMRV-related CFS."

    All of this leaves doctors and patients in a muddle. There's no doubt they're hungry for information. Out of curiosity, Lombardi did a Google search on "XMRV" the day before the Science paper hit and found about 22,500 hits. Three months later, there are 400,000.

    But some scientists, including Coffin and McClure, fear that the Viral Immune Pathology Diagnostics clinic (VIP Dx) took advantage of that hunger by offering the $650 diagnostic test for XMRV, 300 of which have been administered so far and which already has a 4 to 6 week backlog. "Leaving aside the issue of who's right and who's wrong," says Coffin, "the original paper did not establish the virus [caused CFS] and didn't establish it as a viable marker." So it's not clear what a patient or physician could do with a positive result. Steve Kaye, a colleague of McClure's at Imperial College London and a co-author of the PLoS ONE paper, noted with some alarm that the authors of the Science paper had speculated about treating XMRV with antiretroviral drugs, which can have harsh side effects.

    However, VIP Dx developed its XMRV test only after a different company began offering one; VIP Dx officials saw their test as a more expert alternative. What's more, Lombardian unpaid consultant for VIP Dx who helped set up and manage the testing programargues that the test is useful. Patients could in theory avoid infecting other people with XMRV and can have their diagnoses validated, if nothing else. His test results also bolster the science in the original paper; he says 36% of tests have detected XMRV, including a few from the United Kingdom. (Test proceeds roll back into research and development at Whittemore, which licenses the test to VIP Dx. VIP Dx has also received financial support from the Whittemore family in the past.)

    To resolve the dispute, both sides say they are willing to work with the other and possibly test each other's samples. In the meantime, more papers exploring the link are slated to appear in the next few months, and each side says it knows of work supporting its results. All that suggests that the field will continue to churn. As McClure told Science, "we take no pleasure in finding colleagues wrong or dashing the hopes of patients, but it's imperative the truth gets out."

    (end)
     
  3. Esther12

    Esther12 Senior Member

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    That was okay. The brief outline made me think the writer was a bit pissed with the WPI. Maybe they were, but the final article seemed fair to me. Wait and see.

    Thanks for the full taxt Kim.
     
  4. Dr. Yes

    Dr. Yes Shame on You

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    This is the same article that was published in "Science Now" on Jan. 6 (discussed in the Fight is On thread), but under a different title: "Chronic Fatigue Syndrome Attacked Again"... but the date here is the 15th (tomorrow??) and it appears to be in "Science" proper. Perhaps this is all that was meant by the 'new McClure article' reported about this morning in the 'Fight is On' thread?

    btw - I thought this was an awful piece of science journalism with obvious ignorance and/or bias displayed by Sam Kean, who has written some crappy stuff in the past as well. I posted on it when it came out... I didn't write a letter to the editor only because it didn't seem important enough, not being in the actual journal itself... But I can't believe they've seen fit to put it there after all!
     
  5. kim500

    kim500 Guest

    Well said, Dr. Yes. Are you planning to write a letter now?
     
  6. Dr. Yes

    Dr. Yes Shame on You

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    Yes, most likely, just because I have a quixotic notion that it shouldn't go unchallenged... But it's a bit late now that it's appearing in hard copy, eh? :Retro redface:

    First, though, I want to see if this is all they are going to publish; in the Reno Gazette where Mikovits sounded off they mentioned that an 'expanded' version of this article would appear on Friday; don't know what to make of that yet, or of the (UK-based) rumors this morning about a new article on McClure..

    Btw, Kim, where did you find the full text? All I could find online was a summary; for the full text you need to be a subscriber or pay for the article...
     
  7. Koan

    Koan Be the change.

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    I love the word: quixotic.

    Kim has vays
     
  8. rebecca1995

    rebecca1995 Apple, anyone?

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    These two paragraphs are expanded in the print version appearing tomorrow. Notably, they add a negative-ish quote from Coffin:

    The print version also mentions that the German and Irish studies failed to detect XMRV in prostate cancer. And that the PLoS study was accepted after 3 days of review. There might be a few other differences from the online version, too...not that it matters now. :-/

    What we need is a positive study or a new study from the WPI, or both!
     
  9. Advocate

    Advocate Senior Member

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    Dr. Yes, your original letter was great. I hope you will send it.
     
  10. Advocate

    Advocate Senior Member

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    I just saw this nice reply to an xmrv question on answers.yahoo.com. The site says it was written by Norton G., a medical professional.

     
  11. wornout

    wornout Guest

    I would like to know why they didn't mention that it was Cooperative Diagnostics that was the first lab to start selling this test to the public.

    CFSAC meeting the end of october 2009. John Coffin did make a statement about Cooperative Diagonstics selling this test online to the public although he does not use the labs name. It is about 2 min in on this link. I think the above article has taken his comment out of context.

    http://www.youtube.com/watch?v=oc8JLB0ufQk&feature=related
     
  12. parvofighter

    parvofighter Senior Member

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    Thanks for posting this Islandfinn!:victory:

    Here's a re-post of the contact info for Science magazine, for those of you with energy this weekend:

     
  13. Dr. Yes

    Dr. Yes Shame on You

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    Thanks for the email address, Parvo!

    Can I have your dog?
     
  14. oerganix

    oerganix Senior Member

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    Dr Yes, I agree this was an awful piece of "scientific journalism" with ignorance and bias. A couple of things stand out to me:

    "It was accepted for publication after 3 days of review."
    It has been reported elsewhere that they PAID to have it placed. If so, that should also be mentioned.

    "Many patients with CFS—long-term fatigue and other ailments that have no known biological cause—report that their symptoms began after an acute viral infection, and scientists have tried many times, but never successfully, to pin CFS to viruses such as Epstein-Barr. Patients have faced skepticism for years over whether CFS is a "real" disease; a viral trigger could vindicate them and explain their nebulous symptoms."

    Since these statements are patently false, I guess we can recognize Sam Kean's bias instantly.

    "But some scientists, including Coffin and McClure, fear that the Viral Immune Pathology Diagnostics clinic (VIP Dx) took advantage of that hunger by offering the $650 diagnostic test for XMRV, 300 of which have been administered so far and which already has a 4 to 6 week backlog. "Leaving aside the issue of who's right and who's wrong," says Coffin, "the original paper did not establish the virus [caused CFS] and didn't establish it as a viable marker." So it's not clear what a patient or physician could do with a positive result. Steve Kaye, a colleague of McClure's at Imperial College London and a co-author of the PLoS ONE paper, noted with some alarm that the authors of the Science paper had speculated about treating XMRV with antiretroviral drugs, which can have harsh side effects."

    Interesting tactic in that he grouped Coffin, who is highly respected in the field of virology, with McClure, who isn't, as if they were in agreement. Also misleading is the statement that Coffin "fears" that VIP Dx "took advantage" by offering their test. Coffin was referring to the CD test; the VIP Dx test was not yet offered when Coffin made his remark at the CFSAC meeting. This answers the question of why Kean did not refer to the CD test by name. Kean also fails to mention that Coffin also said that the WPI paper in Science was "as good as it gets for a first paper".

    McClure's colleague, Steve Kaye, noted "with some alarm" about some unverified "speculation" by the authors of the Science paper regarding treating XMRV with antiretroviral drugs, which can have harsh side effects." I have to ask, Mr Kaye, where is your "alarm" at the side effects, including death, that your clique advocates as treatment for the psychosomtic "illness beliefs" of ME, such as GET?
     
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, I thought it was a good article. I thought it fairly quoted both sides. And I really appreciate the understanding of why WPI started offering tests. It showed WPI had an understanding that patients would flock to get tests and WPI felt like they had better tests. If they didn't offer tests, then all of us desperate people would be giving their money to someone, so why not provide them with the best version of the tests available. I don't know if I agree that it was the right decision, but at least I understand their reasoning better, thanks to this article.

    And while biological abnormalities have been found in CFS patients, the cause is still unknown.

    Nebulous may have been the wrong word, though. The symptoms aren't vague to those who have them. A better word could have been chosen.

    And besides Mikovitz, do we have another source that the IC paid to have it in PLos? If there is another source, then yes, it would have been good to mention in this article, if they thought it important to mention the three days.

    But I am glad this is in Science. Because it is very respected. And it gives some explanations that shows the IC study is not the last word.

    Tina

    Tina
     
  16. The point is that Mclure Coffin Wessely et al did not follow the WPI protocol in any way shape or form .This is a complete departure from the scientific method which has allowed Science to make such progress by building on the work of earlier workers.Coffin asserts that the WPI study did not use a viable marker-what is his evidence for that-that is not science but a very subjective opinion! He is implying that the whitmore institute did not produce a viable marker for XMRV but is actually referring to cfs-they did not claim that!To say that the test used by imperial college would "presumably"? have found the XMRV virus if it existed is pure conjecture They had an opportunity to prove that by using a positive whole blood control-why did they use water and duck that question?
     
  17. V99

    V99 *****

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    Gerwyn, Coffin had nothing to do with the UK study, and when he says that the original paper did not establish the virus [caused CFS] and didn't establish it as a viable marker, he is telling the truth. He also said this when he was sat next to Dan Peterson at the CFSAC meeting. I don't think this bothers the WPI either, as they have said pretty much the same thing.

    Coffin also said, "It's as good a first paper as you will ever get."

    I think Coffin is someone we can trust. He will look at the science, and not from a political point of view.
     
  18. I wonder why they have-Why dont they point out the obvious differences in protocol and patient selection and the blatant departure from scientific protocol-I,ve written to the Editor pointing out a number of key issues-not least the wilful avoidance of a +ve whole blood control group which would have either validated their test or proved it to be useless-WHY???
     
  19. Esther12

    Esther12 Senior Member

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    It's not clear the differences in selection criteria can explain the differences between the two studies. The only way it could explain the total absence of XMRV in the patients studied would be if Wessel intentionally skewed the selection in a fraudulent manner. Without clear evidence this happened they will not even hint at that sort of accusation. If further replication studies show that the PCR tests used should have detected XMRV in a significant portion of CFS patients maybe then their will be a closer examination of selction criteria. I'd be amazed if this was the key difference.

    I think that only those with a really good understanding of scietific procedures should write to Science telling them that they're doing it wrong. It could well be that things we think are strange are actually quite normal.
     
  20. Kelly

    Kelly

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    As a journalist I would respectfully disagree. Mr. Kean did his job and he did it quite well given that like most journalists he is not up on all the myriad nuances of the issues surrounding CFS. Most patients don't even know half of the history or science - it is not reasonable to expect someone who writes many articles a week on a wide range of issues in health, science and medicine to be an in-depth expert on any or all of them. How much did you know about CFS prior to becoming ill if you are a patient? This was a short article not War and Peace.

    That you did not like what his sources said doesn't mean it was a bad piece, all it means it that you did not like what they said. Not the same thing at all. There was no apparent bias on Mr. Kean's part either on factual information or choice of sources. He did not express a personal opinion, everything came from attributed sources.

    Like science, journalism has specific protocols. It was Mr. Kean's job to provide information from at least three sources which he did. He cited John Coffin who has no horse in this race, but is a retrovirus expert; he cited Dr. McClure which was appropriate as she is a retrovirus expert and was part of the Erlwein et al XMRV study; he referenced Lombardi et al with a link AND a quote from Dr. Lombardi. He also quite correctly noted the financial link between XMRV testing and Dr. Lombardi. In science that is called a competing interest. (Regardless of the intent it looks bad) Could it be said that the Kings College group has a competing agenda? Yes they do. But, most journalists aren't aware that competing interests include ideology. That's far more difficult to prove and explain than "they will be making money off patients."

    That is Mr Kean's job and he did his job. He also provided balance by allowing experts on all sides of the issue to speak. Given that CFS is rarely in the news perhaps you could view it as a way for a much broader range of people from scientists to the public, and who have no horse in this race, to gain additional knowledge and interest.

    PS I can tell you firsthand that angry letters to the editor making baseless, inaccurate or unproven accusations rarely have the intended affect regardless of the issue they address. That is what circular files are used for. Such letters reflect far more on the person writing the letter and if you think about it, most people ignore or back up from angry people and even further if they think the person is psychologically unbalanced. They rarely stick around to find out whether the anger is justfied or the person sane. That's human nature. In the case of CFS, such diatribes may simply further convince people that people with CFS appear to be basically unhinged thus reinforcing a myth that is unfortunately alive and well.

    A suggestion to all patients who wish to be heard: Don't shoot yourself (and everyone else) in the foot. Be polite, be factual, and use citations if you are trying to prove a point.
     

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