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UK Media coverage of NIH/FDA paper

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, Aug 24, 2010.

  1. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Matlock, Derbyshire, Uk
    Please excuse the UK's arrogance

    I Emailed The Guardian newspaper this morning, asking them to do a follow up to the story they ran on Jan 6th, after the Imperial College study came out. Hpefully the delay in reporting is due to them compiling an "in-depth" response rather than a regurgitation of superficial Press Association material.

    As a UK resident, I continue to be both ashamed and embarrased by the apparent arrogance which we display (as a nation, not individually) towards the groundbreaking work that is going on in the U.S.
    I'm ashamed because as a country, we are in my opinion, "sponging" off the work of others (and not making a properly funded contribution to help the research effort) and embarrased because some of our UK based researchers compound that failing by criticising and undermining the likes of the WPI.

    I can only say that I am personally sorry.

    TGOP :Retro redface:
  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Just did it. Well done Sasha:Sign Good Job:
  3. VillageLife

    VillageLife Senior Member

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    Ok,

    the BBC reported professor wessleys negative paper
    http://news.bbc.co.uk/1/hi/health/8441491.stm back in January.

    But the BBC have not reported a new positive study by the FDA/NIH!

    The BBC is one of the best news organizations in the world. I just cannot believe this.
  4. Sasha

    Sasha Fine, thank you

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    Thanks, Rusty! There are some good comments on there generally - I just scanned the most recent and the best rated and liked what I saw - not ranty, just well argued, good, calm, concise points. And it comes across that PWC want to protect others by protecting the blood supply.

    We're looking good!
  5. Sasha

    Sasha Fine, thank you

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    Thanks for the bumps, guys! I'm maintaining my position. I think people will be finding this Daily Mail article long after today and it will be good if they look at those comments and find the info about why the story is so important.

    I really hope the Mail follows up on this story.
  6. Min

    Min Senior Member

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    Maybe they are looking for another anonymous doctor to repeatedly denigrate both us and the research findings now that Dr Crippen has retired? The Guardian is the last UK newspaper we can expect fair coverage from.
  7. Trooper

    Trooper Senior Member

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    I am glad to hear the comments made it onto the Daily Mail site. I am still boggled that this hasnt been picked up anywhere else.

    Anyway, thanks Villagelife, your last post spurred me into contacting the BBC and very very politely asking WTF is going on as well as explaining how this story beats the last story they ran on CFS/ME.

    Thanks everyone else too for writing and commenting : )
  8. Kate_UK

    Kate_UK Senior Member

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  9. Esther12

    Esther12 Senior Member

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    By most standards I'm rather to the left, but I still have to recognise that the abuse met out to CFS patients in the UK is a lefty, paternalistic sort. If it is shown that XMRV (or related) causes CFS, and all the psychological stuff was just nonsense, it will be the Daily Mail that's on our side and the Guardian that is making excuses for those who screwed us over.
  10. ukxmrv

    ukxmrv Senior Member

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    The Guardian doesn't only "make excuses for", it only celebrates and collaborates with those who denigrate us.

    We may get a glimpse of fairness occasionally but we do know that when ever they print a moderately supportive article on ME, then a longer, more damaging one is also in the pipeline.
  11. Sasha

    Sasha Fine, thank you

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    Ugh! Well, at least they covered it but it's rather a poor article. They describe CFS as involving "cramps, listlessness and lethargy". And focus heavily on McClure's scepticism of the Alter findings.

    I can't get upset at this kind of stuff any longer. I convinced now that history will be on our side and that it will be on it very quickly.

    Perhaps we'll see some better stuff from more UK media later.
  12. VillageLife

    VillageLife Senior Member

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    I'm sure Dr Harvey Alter.... chief of infectious disease NIH, felt he did everything that was necessary!
  13. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    ME Association (UK) Summary & Statement on the Alter/Lo paper

    The UK's ME Association summary and statement on the Alter/Lo paper is now up on a separate thread under the Media, Interviews, Blogs, Talks, Events etc section.

    It is quite detailed and I have posted it in full on their behalf as they are unable to post on their UK website at the moment (tech guy is on holiday). So there is no other direct link to the statement elsewhere on the web just yet.
  14. ukxmrv

    ukxmrv Senior Member

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    If she wants "reassurance" she can bleeding well do it herself.

    Oh dear, I keep forgetting she doesn't have a test that works on CFS!
  15. OverTheHills

    OverTheHills

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    Sasha I can only admire your equanimity.
    I cannot post a comment on this articles infuriating, insulting and plain wrong description of 'chronic fatigue syndrome' - you need to be a subscriber to comment. Perhaps someone on these boards has a New Scientist subscription P l e a s e!

    OTH (discombobulated)
  16. V99

    V99 *****

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    Others have pointed this out elsewhere, but that is what the WPI did. Oh Myra you are funny :rolleyes:
  17. Sasha

    Sasha Fine, thank you

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    Not sure if it's equanimity or a defence mechanism, OTH!

    But I am increasingly at the point where I can't see a plausible alternative to XMRV/MLVs being "it" for CFS. One can't find evidence of an association by error or due to contamination unless there are particular kinds of design flaws in studies that certainly weren't present in the Alter study, such as failure to blind properly. And the magnitude of the association - 87% of cases vs 7% of controls - is both huge and essentially a replication of that found in the Science study.

    It really does seem like it's only a matter of time before the whole balance of the thing tips well beyond the point where people can get away with stupid comments and I think that's going to be on the scale of weeks. I think the info from the upcoming XMRV conference might be the tipping point.
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sarcasm, I love it!
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Letter to the Editor - New Scientist

    I just emailed the following letter the the New Scientist magazine for potential publication.

    I am not a subscriber and I don't know if my letter is too long, but I emailed it anyway.

    I mentioned the Kings College team (-ve study) specifically, as that will be the one that they are most likely to know about (unfortunately).

    ..............................

    Dear Sir,

    Many thanks for covering the important story of an apparent link between retroviral infection and M.E./ Chronic Fatigue Syndrome. (Andy Coghlan, NewScientist Online, ‘Virus Link with Chronic Fatigue Syndrome Resurfaces’, 25/08/10).

    This devastating illness of neuro immune pathology can leave sufferers profoundly exhausted, paralysed and bed ridden for years, requiring, in many cases, tube feeding and full nursing support. An estimated of a million patients are in the UK alone, although the figure may turn out to be considerably higher once further biomedical research gets underway.

    XMRV and related microorganisms (Mouse Leukaemia Virus Related Viruses) are proving notoriously difficult to find in the blood (as a King’s College team discovered earlier this year), but post mortems from recent animal model studies in the US demonstrate that these viruses migrate to the organs quite quickly.

    I was encouraged to read that a number of researchers from the UK will be attending the world’s first XMRV Conference in the US this September, where an extraordinary constellation of the world’s top retrovirologists will assemble to discuss these exciting new discoveries and make decisions upon subsequent pathways for research.

    Positive findings already made from additional studies (including the UK & elsewhere in Europe) will be assessed, as will the vital subject of how to maintain the safety of the blood supply for future generations (a huge priority given the 7% positive rate in healthy controls from the FDA/NIH Lo et al paper).

    Dr Harvey Alter, a co-author of this latest positive US study, also discovered the Hepatitis C virus. Given his long track record and unassailable scientific credentials, I consider this new and stunning discovery to be highly credible.

    Yours sincerely,
  20. filfla4

    filfla4 Senior Member

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    Well done!!! Excellent!!!

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