1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

The Independent newspaper - Study that 'solves' chronic fatigue blocked

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Jul 8, 2010.

  1. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    Article today about the XMRV FDA/NIH blocked papers. XMRV makes UK press!

    http://www.independent.co.uk/news/s...chronic-fatigue-syndrome-blocked-2022195.html

    A study that supports the controversial link between chronic fatigue syndrome and a new type of virus has been blocked from being published in a leading scientific journal even though it had been accepted for publication by its editors. The study, by virologists working for the US Government's Food and Drug Administration (FDA), is believed to support earlier findings published last October claiming that patients with the syndrome, also known as ME, are likely to be infected with a virus called XMRV, which some scientists believe may trigger the condition.
    However, American government officials have persuaded the journal, the Proceedings of the National Academy of Sciences, to hold off from publishing the scientific paper because it contradicted a second study by other government scientists at the Centres for Disease Control and Prevention (CDC), which like the FDA is also an arm of the US Department of Health and Human Services.
    The CDC study did not find evidence for the presence of XMRV in patients with chronic fatigue syndrome, which led officials to postpone the paper's publication until the two government groups could clarify the discrepancy. However, the CDC paper has been published online by the journal Retrovirology after intervention by senior virologists concerned about it being held up.
    Patients' groups fear there has been a conspiracy to suppress data in support of the idea that chronic fatigue syndrome is caused by a viral infection. However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV.
    Chronic fatigue syndrome affects about three in every 1,000 people – some 250,000 Britons – and results in severe physical and mental exhaustion. For many years it went unrecognised as a genuine medical condition and many doctors today would say that it has a psychological as well as a physical basis, but few believe it is caused solely by a viral infection.
    However, last October the journal Science published dramatic findings suggesting that XMRV – murine leukaemia virus-related virus – could be infecting the vast majority of chronic fatigue patients. The work was carried out by a team led by Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada, who said that the discovery of a viral cause of the condition could revolutionise the treatment of ME.
    Nevertheless, several attempts to replicate the findings by Dr Mikovits failed to establish a link between XMRV and the condition. Two groups in Britain and one in the Netherlands published studies showing no links to the virus, and three other groups, two in the US and one in Europe, have reported negative findings at conferences.
    But in May, at a blood safety meeting in the Croatian capital of Zagreb, a respected virologist, Harvey Alter of the US National Institutes of Health Clinical Centre, gave a talk where he told the audience that he and his colleagues have independently confirmed the Mikovits' study, which is "extremely strong and likely [to be] true".
    It is this study, led by Shyh-Ching Lo of the FDA laboratory in Bethesda, near Washington DC, that was submitted to and initially accepted by the Proceedings of the National Academy of Sciences. However, when officials from the Department of Health and Human Services heard about it they took fright that it would contradict the only other American study into XMRV and the syndrome that was ready for publication, according to sources.
    William Switzer of the CDC failed to find any evidence for the presence of XMRV in 51 patients with chronic fatigue syndrome and a similar number of healthy people. "These data do not support an association of XMRV with [chronic fatigue syndrome]," the researchers concluded in their paper published in the journal Retrovirology.
    Dr Mikovits said that the study was flawed because it failed to use patients that had been formally diagnosed with chronic fatigue syndrome and it failed to use "positive controls" in the form of blood from people who were known to be diagnosed with XMRV infection.
    "We've now got more than 1,000 individual patients from around the world in whom we've detected and isolated the virus ... no, I haven't changed my mind on this," Dr Mikovits said.
    XMRV was originally found in men suffering from prostate cancer and it was this discovery that led Dr Mikovits and her collaborators at the US National Institutes of Health to test blood samples stored from patients with chronic fatigue syndrome.
    Shelly Burgess of Proceedings of the National Academy of Sciences said: "The FDA/NIH paper has not yet been accepted for publication. The paper is currently undergoing a rigorous scientific review process."
    The FDA declined to comment.
    ME: the facts

    * Chronic fatigue syndrome, or ME as it is often called, affects about 250,000 people in Britain and is estimated to have blighted the lives of some 17 million people worldwide.
    * It was originally known by the derogatory term "yuppie flu" and was dismissed by many medical authorities as not a genuine condition with a physical basis.
    * The condition seems to affect more people in their 40s and 50s although it can affect children and adolescents. More women than men report having the symptoms which can range from relatively mild tiredness to severe physical and mental exhaustion.
    * Common symptoms can include impairment of short-term memory, sore throat, tender lymph nodes, muscle and joint pain, headaches and unrefreshing sleep. The main symptom however is chronic fatigue lasting for four months or more.
    * Treatment can include cognitive behavioural therapy, a psychological approach to treat people with the severest symptoms. Physical treatment can include graded excercise therapy, where patients are encourage to gradually do more to combat their feelings of exhaustion.
    * There is no strong evidence that the condition is infectious, although close relatives of a sufferer are at higher risk, possibly because of a genetic predisposition.
  2. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV.

    I find this line from the article up setting. I seriously doubt anything Dr Alter produces could be seriously flawed.
  3. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    Ive just plastered this all over facebook

    However, scientists who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV........

    WHAT ? :confused: ITS THE BLOODY CDC STUDY THATS FLAWED JESUS TALK ABOUT PROPAGANDA
  4. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
    When are we going to get our Chance, our lucky break, it's time now surely!
  5. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    Nice catch villagelife

    I can smell a weasel

    Why o Why do they not write up the real full facts about the other studies in more detail.
    I noticed that you can add comments. I'm to thick to reply with all the relevant facts.
    I'm sure theres someone here that can reply with the full facts, say a time-line of whats been going on.
    Any takers?
  6. pollycbr125

    pollycbr125 Senior Member

    Messages:
    353
    Likes:
    180
    yorkshire
    To be honest it is what i expected from the British press look how they covered up CJD mad cow disease and still are . Not impressed at all . Though you can see why theyve done it they are obviously worried that folk are picking up on XMRV with all of us spreading the word on social networking sites . This is obviously an attempt to allay any public panic . They obviously think we are stupid , this has just really wound me up the wrong way I will not be silenced and will make sure I keep spreading the word .


    :Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad::Retro mad:
  7. Cookie Monster

    Cookie Monster

    Messages:
    76
    Likes:
    0
    Agreed Villagelife - this paragraph has the Weasal stench.:Retro mad:

    This journo is just another slime-ball - writing the usual old b*llocks - he should be made to reveal that source not use the general word "scientists" which is so non-descript anyway. If it were a biomedical scientist saying something thats different - the vagueness means its almost certain to be the psychologists at Kings.
  8. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Hang on guys. The cat is out of the bag with XMRV and the CDC won't get away with destroying THIS Retrovirus research and findings again. Way too many people are aware of it and it won't go away because Weasel and pathetic Reeves are trying to make it go away. Hold on and keep spreading the word to the media.
  9. Lynn

    Lynn Senior Member

    Messages:
    301
    Likes:
    51
    If you change this quote just alittle bit, it might make more sense..."However, scientists FROM THE CDC, (my addition) who have seen the FDA study have told The Independent that it is seriously flawed and should not be published in its present form because it cannot support its assertion of a link between chronic fatigue syndrome and XMRV.

    Lynn
  10. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
  11. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    Any ideas on how to make Steve Connor give up his source? Torture by blood transfusion from a person ill with old wine in new bottles?
  12. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    However, the CDC paper has been published online by the journal Retrovirology after intervention by senior virologists concerned about it being held up.


    This is war.
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,438
    I don't think it's fair to attack Steve Connor. His earlier bits seemed fair. The Independant was probably the paper which did the most coverage of the initial Science paper. Wasn't it the only story on their front page?

    I'd desperatly like to know the source for this quote though.
  14. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    No one attacked Steve Connor. I just pointed out that he has historically gotten quotes from Wessely. The "Torture by blood transfusion" part was a joke.
  15. Sean

    Sean Senior Member

    Messages:
    1,214
    Likes:
    1,961
    And a good one too - I laughed. :Retro smile:
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,438
    You're right. I thought you'd been more condemning than you had been, and then I thought your second post was from someone else who was joining in.
  17. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    If the Alter paper is so flawed, they NEED to print the original with the "revised" version so scientists can see where Alter messed up. ;)
  18. biophile

    biophile Places I'd rather be.

    Messages:
    1,386
    Likes:
    4,553
    Will the CDC be responsible for perpetuating XMRV denialism?

    What I can gather from different news sources, the CDC has been the main driving force behind all these recent events. First they convinced the DHHS to have both papers suspended, then pushed their own paper through anyway, and are now casting doubt on the NIH/FDA paper.

    The negative statement in The Independent is probably a CDC scientist or associate, failing that, Wessely or associate. Today I am going to watch the movie, "And The Band Played On" (1993).

    I still possess a little more cautious optimism than cynical pessimism: if the CDC is playing dirty politics, science should win out eventually, sooner rather than later, and the CDC will be stained. I also expect XMRV denialism to continue for a number of years even if the NIH/FDA study holds firm and further studies demonstrate causal influence.
  19. Levi

    Levi Senior Member

    Messages:
    188
    Likes:
    27
    The Independent

    Is a pretty good newspaper. What if they are right and the Alter study is seriously flawed? They are more than hinting here that the embargoed paper will never see publication, and that higher ups in the DHHS/ NIH will spike the paper. I guess we are never going to know much about the FDA research. Looks now like any CFS/XMRV link is a complete long shot, and government funding will dry up for any further studies of CFS and XMRV.

    At least those prostate cancer research folks will probably get some funding to research XMRV, and maybe come up with a good diagnostic test for it. Even so, XMRV is now a human retrovirus without a disease, and it will probably stay that way for some time. The British Psych lobby is probably doing nip-ups right now . . .
  20. boomer

    boomer Senior Member

    Messages:
    143
    Likes:
    6
    And the longer the CDC drag their heals the longer the period of time that people fester against their actions. It is in their interest to act asap to get the paper out. Take their lumps up front. Take dynamic action now and get it out. They could reallocate funding from the psychology dept to cfs. Maybe these minutes and days are nothing to them but to the cfs population, they mean a lot. The sooner the information is shared with the world the sooner scientists can research.

See more popular forum discussions.

Share This Page