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Media Coverage of Dr. Alters NIH paper, post stories here

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Aug 23, 2010.

  1. eric_s

    eric_s Senior Member

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    Lol, not a big surprise

    Here's how google translates it

    Nothing new, but it's good to see articles from many countries.
     
  2. Recovery Soon

    Recovery Soon Senior Member

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    Where's the Panic?

    I am utterly baffled that the cover of every newspaper is not splattered with "NATION'S BLOOD SUPPLY AT RISK"

    This is exactly the sensationalism that reporters live for. Just look at the attention the Egg problem is getting- It was on Larry King Live Last Night.

    A school Principal I know said he didn't think this would be a big press story.

    I replied that when school opens in 2 weeks that he should look inside every classroom he passes in the building and then guess which 2 students inside each one are infected with an HIV like Retrovirus.
     
  3. Sunshine

    Sunshine Senior Member

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    Military psychiatrist in denial of ME/CFS is science advisor to the UK media.

    Hi. Professor Simon Wessely is the UK science advisor to the press regarding CFS/ME, which is why there is a lack of articles on the Alter/Lo paper.

    He is the state authority on the illness, therefore him and his messengers will comment on the Alter/Lo paper in as negative way as possible, but it takes time.

    Guardian, Telegraph, Independent, Times, BBC, will all get the denialists articles very soon in which CBT will be mentioned and stories of 'recovery', and the way CFS patients are angry and abusive towards psychiatrists to play the sympathy vote.

    Thanfully this is all coming to and end, but it will still take more time. We await more XMRV/MLV positive study news in the forthcoming XMRV conference. ;)
     
  4. Wasbeer

    Wasbeer

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  5. BEG

    BEG Senior Member

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    Thanks! And yes it is.

    BEG
     
  6. Sunshine

    Sunshine Senior Member

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    I see you are in th USA, but if I may I will comment regarding the situation in the UK and then you can draw parallels with CDC and US federal sources for public education.

    In the UK, journalists cannot comment. Their 'source' (Professor Simon Wessely, psychiatrist) is silent for a reason, until the spin is written at the institute of psychiatry and filtered down. Journalists have a scientific source for 'CFS/ME', and the source has told them to wait. The backlash is about to be released, OR (new tactic) there will be total silence which will mean they have changed from public disinformation/deception on the true cause of ME, to the censorship of broadcasting scientific fact. Lets see which option they take.

    The UK NHS is investing millions of pounds to 'cure' 'CFS/ME' through psychological supportive methods/CBT/exercise, and are now interested in Lightning Therapy (self positive affirmation) in children. 'CFS/ME' is a biopsychosocial mental illness in the UK, yet genuine neuro immune disease patients are inside this groupa also. Telling the UK public they are part of a next version of a HIV/AIDS epidemic (this time causeing neuro inflammatory disease, not rapid death) is not on their agenda.

    Check the latest 'cutting edge' treatment in the UK for CFS/ME, the PACE & FINE trials, the results are/were due to be published until 2012.

    PACE TRIAL: CBT, Graded Exercise, Adaptive Pacing.
    FINE TRIAL: Pragmatic 'rehabilitation' delivered by nurses in patients' homes Vs supportive listening by a doctor

    * Note the CFS ME patients do not have CFS ME. They have 'Oxford Criteria' Chronic Fatigue which includes people recruited from psychiatric hospitals, and/or people who do not meet Fukuda CFS, or Canadian Consensus definition CFS. Anyone with idopathic chronic fatigue is then called a CFS/ME patients meaning at the very least these million pound studies will have some positive results.

    This is how the trial will 'prove' you can cure CFS ME or 'treat' it, with psychiatric therapy by chosing a cohort without the disease you claim to be studying. Outside of the UK, this is commonly called state corruption and lying. For a socialised medical health care system who need to supress XMRV infection in the general public, it's normal and ethical. There is no other way. How can the UK Department of Health/NHS be running a psychiatric recovery programme on one hand and tell the UK public their carry an dangerous infectious life long retroviral infection with no cure that causes ME/CFS?

    Best to keep lying, or (possibly new tactic) to say nothing and hope no one notices, commonly called a news black out. America is not as corrupt as it has no socialised medical system and so patients have some choice to go private (if they have money), but it is seeing the incredible power the UK Wessely School of psychiatry :(Wessely/White/Chalder/Sharpe/Pinching/Findley/Crawley/Hotopf/Deary/ etc) have had over the years and want that power too in America. CDC's Bill Reeves openly praises UK's Professor Peter White for example. A psychiatrist who is putting bed ridden people on exercise bikes to 'rehabilitate them' back into society.

    The CDC's advise on treating CFS now include views from UK psychiatrists who publically state ME CFS does not exist or contain people who are biologically ill and theorize that ME CFS are expressions of grief and/or 'life-style-choices' by lazy people who feed of the welfare system. Nearly all Americans without CFS are unaware that hate from UK 'CFS' experts is being imported from the UK into the USA, via the CDC.

    This discrimination is fully installed in the globes psyche regarding CFS, and may explain the lack of media coverage. People are rarely interested in hysterial attention seeking fake people....how we are viewed in general. These people are also journalists......
     
  7. SOC

    SOC Senior Member

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    I think there's no panic because NIH/FDA/HHS or some governmental group of that ilk is deliberately putting a low-key spin on the info. As emotionally satisfying as it would be for PWCs (me, anyway) to see a little alarm in the general populace ;) , we probably don't really want a world-wide panic.

    Things are happening. My guess is that the public is being fed the info slowly. I imagine we'll soon be barred from donating blood, for example. And the science is moving quickly. The researchers get it -- that's the most important thing for getting treatment. The path to recognition (by the general populace) as people with a serious illness is going to be a little more... leisurely. *sigh*
     
  8. SOC

    SOC Senior Member

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    You folks sure have a major "Who guards the the guards?" problem over there. We've had it here with Reeves/Strauss, but not to that degree.

    Hasn't it occurred to the medical authorities that relying on ONE person for your security (or information) leaves the whole system at risk from that one person's weaknesses? Bit of an all-the-eggs-in-one-basket thing going there.
     
  9. Min

    Min Senior Member

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    Yes, but his extremeviews holding sway saves the UK National Health Service an awful lot of money as they then don't have to test and treat a quarter of a million people for a retrovirus and other pathogens.
     
  10. BEG

    BEG Senior Member

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    Today's Wall Street Journal:

    By AMY DOCKSER MARCUS
    Researchers said they had identified a family of retroviruses in patients with chronic fatigue syndrome, opening up a potentially promising new avenue of treatment for a debilitating disease that afflicts as many as four million Americans and 17 million people world-wide.

    The finding will likely spur patients with the condition to seek treatment with drugs used to fight HIV, the virus that causes AIDS. Although HIV and the newly identified virus group are different, they are both retroviruses.

    The report, published Monday in the Proceedings of the National Academy of Sciences, was accompanied by a call for new clinical trials to test HIV drugs in patients with chronic fatigue syndrome.

    Doctors don't know what causes chronic fatigue syndrome, characterized by debilitating fatigue and chronic pain with symptoms that can wax and wane over time. Some patients say friends, co-workers and even family members don't believe they are really sick.

    Studies finding a viral connection with the disease would completely transform how the illness is treated and viewed. The findings also offer a potential path for treatment, possibly with drugs that are already FDA-approved for another condition.

    Based on other recent research linking the syndrome to a retrovirus called XMRV, some doctors are already prescribing drugs approved for HIV for fatigue patients. The syndrome has no effective treatments yet.

    HIV Drugs Also Inhibit Retrovirus Linked to Prostate CancerAccess thousands of business sources not available on the free web. Learn MoreThe group of viruses identified in fatigue patients, called murine leukemia virus-related viruses, or MLV, are known to cause cancer and neurological problems in mice, but whether they cause disease in humans isn't known. XMRV is among several different members of the MLV family, researchers said.

    In the new study, researchers said they found at least one of four different MLV-like viruses in 32 of 37, or 86.5%, of patients with chronic fatigue syndrome, compared with just three of 44, or 6.8%, of apparently healthy blood donors.

    Monday's paper is the latest in a series of reports about a possible link between CFS and a virus. Interest in viruses has been intense since an October report in the journal Science found XMRV in a majority of fatigue patients.

    Subsequent studies have focused on XMRV and found conflicting evidence. Indeed, the just-published study was held back from publication in June because it was at odds with a report from the Centers for Disease Control and Prevention, which found no evidence of XMRV in chronic-fatigue-syndrome patients.

    The current paper didn't find XMRV, either—one reason it isn't likely to resolve a brewing debate over the role XMRV may play in the syndrome.

    But researchers said the variants of MLV-like viruses closely related to XMRV that they found in fatigue patients was evidence of a link between the virus family and the syndrome.

    Andrew Mason, a University of Alberta professor, co-wrote the commentary in the journal calling for trials testing anti-retrovirals in CFS patients who are positive for one of the MLV-related viruses. "If the patients improve, after a certain point you stop debating whether it causes the disease and say, the treatment works and we're going to use it,'' said Dr. Mason.

    But until scientists develop further evidence establishing that the virus causes the syndrome, a large-scale clinical trial testing HIV drugs against the ailment isn't likely. Norbert Bischofberger, chief scientific officer at Gilead Sciences Inc., the leading maker of HIV drugs, said the company might consider a small pilot trial but would like to see stronger evidence that the viruses cause CFS before launching a large trial. Still, "I'm very open, and this would be a great opportunity,'' he said.

    A spokesman for Merck & Co., another major manufacturer of HIV drugs, said: "A clinical trial program would be possible to develop only after further substantial evidence of an association with CFS.''

    Some doctors and patients are already testing the idea, based in part on a University of Utah and Emory University study in cells. The compounds were tested singly and then in combinations of two at a time, and suggested that three anti-retroviral drugs appeared to inhibit infection by XMRV.

    Jamie Deckoff-Jones, 56 years old, a doctor and CFS patient in New Mexico, has been blogging about her experiences and those of her 20-year-old daughter. Both tested positive for XMRV and are taking a combination of three anti-retrovirals.

    Dr. Deckoff-Jones said a year ago she could only get up for short periods during the day. After five months on the drugs, she flew last week to Reno for an XMRV conference. Her daughter was able to go to a party and is enrolling in community college. "This is all very new, and there is no way to know if improvement will continue,'' Dr. Deckoff-Jones wrote in an email, "but we appear to be on an uphill course.''

    After the latest paper was held, the researchers took additional steps to demonstrate that the finding was related to a retrovirus and not lab contamination. Eight of the fatigue patients in the study who tested positive for an MLV-related virus using blood frozen 15 years ago were asked to come back to give fresh blood. Seven of the eight remained positive, and the virus had changed slightly over time, a characteristic of a retrovirus.

    Many questions remain on why different groups are coming up with different results. It is still unclear why the Centers for Disease Control didn't find XMRV or MLV-related viruses in its own study of fatigue patients. At a press briefing Monday, Steve Monroe, director of CDC's division of high-consequence pathogens and pathology, said that CDC was able to find MLV-related viruses in a small number of prostate cancer patients, data that isn't yet published.

    Anthony L. Komaroff of Harvard Medical School, an author of the latest study, said one explanation may be that the patients used in the new study were chosen because they were very sick. Patients in other studies "are a very different group of people than the ones that knock on my door,'' he said.

    Meantime, the finding that a small fraction of healthy blood donors may be harboring MLV-like virus raises new worries, researchers said. If confirmed and shown to reflect the presence of the virus in the broader population, it could mean that tens of millions of people in the U.S. and more world-wide are infected.

    The implications aren't clear. Research has also linked XMRV to prostate cancer. People diagnosed with chronic fatigue syndrome are already barred from donating blood in Canada, Australia and New Zealand out of fear a virus may be passed on through transfusions.

    AABB, a Bethesda, Md., organization whose members collect most blood donated in the U.S., advises that Americans with fatigue syndrome not donate blood until more data are available. A federally led working group is trying to determine how many blood donors may be infected.

    Write to Amy Dockser Marcus at amy.marcus@wsj.com

    Copyright 2009 Dow Jones & Company, Inc. All Rights Reserved

    This copy is for your personal, non-commercial use only. Distribution and use of this material are governed by our Subscriber Agreement and by copyright law. For non-personal use or to order multiple copies, please contact Dow Jones Reprints at 1-800-843-0008 or visit

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  11. Joanne60

    Joanne60

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    I spoke with several National paper editors all rather disinterested although The Daily Mail news editor was clearly unaware that they had already run this pathetic excuse for an article
    http://www.dailymail.co.uk/health/a...ed-mouse-related-virus.html?ito=feeds-newsxml
    I did leave a comment which hasn't been added yet but perhaps others would do the same.

    The Independent said they had done an article but it was pulled because there was more important news I said what more important than something that could impact on not just the millions of ME/CFS sufferers but those with Lyme disease and other neurological illnesses.

    I won't be wasting money on buying any more newspapers what a lot of rubbish they print.
     
  12. gu3vara

    gu3vara Senior Member

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    I wrote to a newspaper of Quebec to try to generate interest in this new study. We'll see what happens
     
  13. boomer

    boomer Senior Member

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  14. jayhawk

    jayhawk

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    I dont see any point in the future that any finding will get the majority or the average person to take anything named Chronic Fatigue Syndrome seriously. I dont blame people for taking the stance they take. When I was studying virology at the university I came across an article on CFS and I didnt have the slightest bit of interest and I have to admit without saying it what I thought in my head. It wasnt until CFS destroyed someone very close to me that I began to really see it as serious. I think its ridiculous that we continue to support its use. I have been advocating that the patients band together and say NO MORE. Everyone who has an ounce of compassion should agree to never to refer to the illness we know with those words again. There will never be an escape for the words chronic fatigue. Lets not kid ourselves.
     
  15. eric_s

    eric_s Senior Member

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  16. eric_s

    eric_s Senior Member

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    Run, Weasel, run :cool:
     
  17. eric_s

    eric_s Senior Member

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  18. Jemal

    Jemal Senior Member

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    I am confused... the article from Belgium is mentioning an entire new study. This is another Belgian article about it:
    http://knack.rnews.be/nl/actualitei...rmoeidheidssyndroom/article-1194803699656.htm

    The article mentions that researchers from the Vrije Universiteit Brussel (University in Brussels) together with RED Labs have found the new XMRV virus in the blood of patients from all over Europe. It's a study done by Professor De Meirleir. He is going to present his findings during the NIH workshop 7/8 september. In the article he's also quoted: "Treatment protocols are currently being developed, both in Belgium and abroad." He's also quoted as saying that the footprint that CFS leaves on the immunesystem can be compared to the footprint HIV leaves.
    (keep in mind I am not a professional translator, but the article is in Dutch and that's my native language, so the translation will not be far off)
     
  19. Rrrr

    Rrrr Senior Member

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    i can not find this article. can someone supply the link?

     
  20. Recovery Soon

    Recovery Soon Senior Member

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    I can't comment about the UK, but in the US, Journalists are definitely free to write about anything they want. There's no conspiracy here.

    I agree. Most people couldn't care less about CFS. But they definitely care about themselves. One out of 16 Americans walking the streets right now are quite possibly infected with an HIV like retrovirus linked to Prostate Cancer, and God knows what else.

    How is that not dominating Headlines?
     

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