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Imperial College XMRV Study - Media Response

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Jan 5, 2010.

  1. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
  2. CBS

    CBS Senior Member

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    Sometimes 'Crazy' is just plain crazy!

    You can get most of what ERV is about from below. Frankly, a bit unhinged for my tastes. Graduate students ought to be a bit more open minded. They can always start to calcify after their first publication.

    I'd point you to the blog on how four years worth of work on her dissertation was entirely misguided and a waste of time but that wouldn't be very nice of me. She discusses how she made a number of assumptions that in retrospect were unwarranted (Gee, why doesn't that surprise anyone?) and that in retrospect she should have been able to see that the results of her dissertation were the opposite of her initial hypothesis. My guess is that there is a very good chance she gets the same results on her XMRV hypothesis.

    The first and third comments are ERV. The remainder are selected responses to ERV.

  3. kim500

    kim500 Guest

    Please go to new article just posted on The Economist website. Comments page, WPI has posted its press release and patients have added excellent comments. Horribly, though, one poster has posted this: "mcji5os1 wrote: Jan 7th 2010 8:20 GMT First, US scientists should try to wash their hands and redo the study. Second, there is a sound way to overcome CFS: The Phil Parker Lightning Process. http://www.lightningprocess.com/"
    There's a bit of a mini fight already starting on this comments page to hoard Recommendations (and Most Recommended status). The Lightening Process mob has already made multiple recommendations of their post, putting it at the top. Please go to the comments page and Recommend the posts from WPI and patients. We must drown out the LP fraud and make our presence felt on every forum.
    http://www.economist.com/node/15211401/comments
    http://www.economist.com/sciencetechnology/displayStory.cfm?story_id=15211401
  4. anne_likes_red

    anne_likes_red Senior Member

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    NZ Media reaction to UK study...

    Silence.

    So far not a bean.

    The WPI study/press release on the other hand was on our national television news on 9th Oct, plus stories appeared in most regional papers within 24 hours. Will see what the weekend papers bring and report back. Maybe we just give preference to good news? :confused: Or preference to good science? :rolleyes:

    Shane, I stumbled into that ERV site this morning *shudder*. Decided it wasn't going to get my day off to a bright start so backed out quickly. Don't think I'll be adding it to my favourites!
  5. cdc criterea

    The point is that the patients were diagnosed according to the Oxford criterea(Sharpe et al).The group of psychiatrists uses nothing else.these patients can fit the CDC criterea if;
    a. depressed patients are not excluded-The oxford critera does not exclude these patients
    and
    b the issue of the effect of mental and cognitive effort on worsening symptoms is ignored -which it was

    I,m a boring scientist well used to evaluating clinical studies and looking for" Rats" at least i was until i lost ALL cognitive functions
    I hope that this may help-i dont think we should merely report their findings as if this was a respectable study-not least because the authors had to pay to get it published!
  6. _Kim_

    _Kim_ Guest

    PharmaLive report

    CFIDS Association of America Expresses Concerns About UK XMRV Replication Study

    Additional and More Rigorous Research Needed CHARLOTTE, N.C.--(BUSINESS WIRE)--Jan 7, 2010 - The CFIDS Association of America issued the following statement in response to a study published in today's edition of PLoS One that failed to detect the XMRV virus in banked samples drawn from 186 CFS patients in the United Kingdom. A study published Oct. 8, 2009 in Science reported that 68 of 101 CFS patients from clinics in the U.S. tested positive for XMRV.

    The CFIDS Association of America reviewed the study published in today's edition of PLoS One. We are concerned about many elements of this study including differences between the patients selected by the two groups, different processes used to collect and test the blood samples, and the rapid nature of the new publication, as evidenced by the three days that separated the dates of submission and acceptance, stated K. Kimberly McCleary, president and CEO of the CFIDS Association of America. We urge the media and the research and patient communities to view these findings in the context of evolving understanding and to insist upon more rigorous and standardized replication studies before drawing conclusions about the role of XMRV in the pathophysiology of CFS.

    CFIDS Association scientific director Suzanne D. Vernon, PhD, made the following assessment: The new report from the U.K. should not be considered a valid attempt to replicate the findings described by Lombardi, et al., in the Science article. This paper heavily underscores the need for expedient, yet robust, XMRV-focused research to build upon the results reported this past fall, studies like the one being conducted by the Department of Health and Human Services Blood XMRV Scientific Research Working Group. Vernon holds her doctorate in virology from the University of Wisconsin and had 17 years experience in public health research on infectious diseases before joining the Association's staff in 2007 to lead its research program. She added, Without a standardized method of detecting XMRV, millions of dollars might be wasted on independent attempts to determine the prevalence of XMRV in different populations.

    Every person whose life has been impacted by CFS wants urgently to identify the cause of and a cure for this devastating condition that affects millions of people worldwide. While time is of the essence, we must insist upon rigorously conducted and reviewed science that provides absolute validation, definitive answers and unbridled hope, said McCleary.

    About The CFIDS Association of America

    The CFIDS Association of America is the nation's largest charitable organization dedicated to making CFS widely understood, diagnosable, curable and preventable. It is the greatest source of funding for CFS research outside the federal government. To view Dr. Vernon's detailed analysis of the U.K. study, please visit http://www.cfids.org/cfidslink/2010/010603.asp.

    Citations:

    Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519
    Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.


    Contact: The CFIDS Association of America
    Sara Collins, 704-364-0016, ext. 120
  7. Dreambirdie

    Dreambirdie work in progress

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  8. fresh_eyes

    fresh_eyes happy to be here

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  9. Dreambirdie

    Dreambirdie work in progress

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    Oh yeah, that's for sure. Things are getting more interesting, as the plot builds.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    News Media Reaction

    I am wondering if maybe those with some history in covering CFS are avoiding covering it now. When WPI results came out, we got some coverage from the national newspapers and National Public Radio. But I didn't see anything on CBS, NBC or ABC nightly news. I know H1Ni was receiving a lot of attention at the time, still.... I would think there would be some coverage. (I know Dr. Donnica appeared on GMA.)

    I am wondering if the news veterans are avoiding covering CFS because it is so complicated they know whatever they report will get a bunch of people upset. I wonder if this has happened in the past, and so they just say, "Let's just see how this plays out. Last thing we want to do is try to cover this and end up with egg on our face and either doctors mad at us or a whole bunch of patients." Some of them may remember the conflicting studies of the 1980s on CFS.

    In this case, we may be hurting ourselves by sending scathing letters for any slight mistake a news media makes or perceived unfairness. I am thinking of Dr. Oz just mentioning stretching for CFS and boy did it hit the fan on the CFS discussion boards. Meanwhile, both Dr. Batemen and Klimas, both considered knowledgeable specialists in CFS care, say stretching is good in most cases of CFS, as long as it is in small doses. I wonder if this may be why Oprah hasn't covered it. It's just such treacherous waters to cover CFS.

    Or, could it be that the correspondents who cover medical matters for these networks are doctors, and they follow the CDC theories? So they are waiting, based on their own bias from what the mainstream belief from the 80s is, their preconceived beliefs lead them to not put much credibility in one study?

    What do you think?

    Tina
  11. _Kim_

    _Kim_ Guest

    News from Reno

    Reno researchers dispute British challenge to virus discovery

    BY LENITA POWERS lpowers@rgj.com January 13, 2010


    Reno scientists who found a link between a retrovirus and people with Chronic Fatigue Syndrome are scoffing at a challenge from British researchers who claim the discovery was false.

    Researchers at the nonprofit Whittemore-Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno made headlines worldwide last October when they reported discovering a new infectious human retrovirus, XMRV, in the blood of 68 of 101 people with Chronic Fatigue Syndrome.

    In a story scheduled to appear Friday in the print edition of Science magazine, Myra McClure, a professor of retrovirology at Imperial College London, said her team of researchers examined DNA from the blood of 186 people with Chronic Fatigue Syndrome for XMRV and a closely related virus, but found neither.

    "If there was one copy of the virus in those samples, we would have detected it," McClure said.
    But McClure and her team did not duplicate the scientific techniques used by the Whittemore-Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic, Judy Mikovits, a lead researcher at the institute, said Tuesday.

    "You can't claim to replicate a study if you don't do a single thing that we did in our study," she said. "They skewed their experimental design in order to not find XMRV in the blood."
    The Whittemore-Peterson Institute issued a statement saying the British study was published after only three days of review as opposed to the institute study that underwent six months of vigorous peer review plus confirmation by three independent laboratories before it was published in Science magazine.

    The statement also cited different techniques used in the British study that make its conclusions meaningless, including the use of a molecular plasmid control in water instead of a positive blood sample.

    "They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.

    She said the Whittemore-Peterson Institute has been flooded with calls from patients with Chronic Fatigue Syndrome discouraged by the conclusions made by McClure and her team.
    "They want to know if we are going to give up because a few people are attacking us, but no, we are not going to give up," Mikovits said. "We are still trying to develop drugs to treat Chronic Fatigue Syndrome. That was our goal, and nothing has changed."

    The Whittemore-Peterson Institute continues to form new collaborations with researchers who are trying to replicate its study, said Annette Whittemore, president and founder of the institute.
    "Our goal has always been to translate our research into diagnostics and therapeutics for patients," she said. "We think XMRV is, at the very least, a biomarker for a subset of patients with Chronic Fatigue Syndrome."
  12. Knackered

    Knackered Guest

    Can someone tell me why insurance companies would want to do that?
  13. Min

    Min Senior Member

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    Because they would have to pay out tp policy holders for tests and treatment if it could be proven that M.E. is a physical illness.

    http://www.sophiaandme.org.uk/collusion.html

    Prof of Psychiatry Simon Wessely works for the insurance firm UNUM

    Prof of Psychiatry Peter White works for the insurance firm Swiss Re.

    Prof of Psychiatry Michael Sharpe and Psychologist Trudie Chalder have done consultancy work for insurance companies.
  14. Knackered

    Knackered Guest


    We'd get it on the NHS anyway? How many people with Canadian criteria CFS can afford health insurance?

    I don't understand.
  15. Alice Band

    Alice Band PWME - ME by Ramsay

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    Hi Knackered,

    The insurance policies affected include :

    • Those taken out by people to cover their salaries if they became ill (Income protection),
    • Personal Injury( by people who developed CFS or ME after an accident or their CFS or ME became worse after an accident)
    • Mortgage and Payment Protection Insurance
    The insurance companies argue that CFS and ME are both psychological illnesses and therefore not covered under the policy OR they argue that CFS and ME are both short term non-serious condition cured by CBT and GET.

    Many doctors with anti-ME beliefs work for Insurance Companies as it is a good source of income for them. They either work as advsiors, set up companies offering "rehabilitation", they offer testing and write Expert Witness reports for the court to say that PWME are psychologically not physically ill. They will also say on oath (in these reports) that the prognosis is good for the patient due to the availability of GET and CBT.

    So the end result is that the PWME is denied a payout from their insurance company or similar.

    How do I know this - well it almost happened to me. A battle lasting 6 years with dirty tricks and harassment from them every step of the way.
  16. Knackered

    Knackered Guest

    So all this anti-CFS rhetoric most probably boils down to insurance companies being worried about their profits? Is that basically it? I wondered why Wessely behaved the way he did.
  17. starryeyes

    starryeyes Senior Member

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    This is also happening worse in the UK because they have different social network systems in place than we do in the U.S.A. They have a completely different Healthcare system than us for instance.

    But here in the U.S.A. I was first sent around to several doctors and shrinks by my LTD and treated the same as UKers are. It took me a year to get my diagnosis changed with my insurance company from Depression to FMS, they never have acknowledged my CFS and I'm a textbook Canadian Definition Case.
  18. Min

    Min Senior Member

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    A number of the Wessely school of thought also work or have worked for the DWP.

    The parliamentary Gibson report into M.E. stated:

    "At present ME/CFS (sic) is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. We recognise that if ME/CFS (sic) remains defined as psychosocial, then it would be in the financial interests of both the DWP and the medical insurance companies. "

    "There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is blatant conflict of interest here. The Group finds this to be an area for serious concern and recommends a full investigation by the appropriate standards body".

    (of course this investigation was never done, none of the report's recommendations were ever implemented)

    http://myalgicencephalomyelitis.dk/KeypointsGibsonReportMW.htm
  19. Summer

    Summer Senior Member

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    Reno Researchers Dispute British Study

    Reno researchers dispute British challenge to virus discovery

  20. _Kim_

    _Kim_ Guest

    Offaly Express

    Virus link to CFS 'in doubt'

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