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XMRV about to break UK Media

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Oct 7, 2010.

  1. VillageLife

    VillageLife Senior Member

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    http://www.meassociation.org.uk/?p=2304

    XMRV on the BBC: Friday, 8 October 2010
    by tonybritton on October 7, 2010

    The MEA has been working with the BBC in order to get some coverage of the XMRV story to coincide with the first anniversary of publication of the famous Science paper.

    BBC news items tomorrow (Friday, 8th October) will, we understand, be concentrating on the UK angle ie the decision by the Department of Health to extend the ban on people with ME/CFS from donating blood to those who have recovered from their illness. This ban will come into force on 1st November.

    So far it looks as though this story will be appearing on:

    BBC Radio 5 Live sometime before 6am

    BBC Radio Scotland: at around 6.35am

    BBC Radio 4 Today programme: at 6.50am

    BBC Radio 5 Live: at 8.30am

    And from 9am onwards various local BBC radio stations including:

    BBC Sheffield

    BBC West Midlands

    BBC Glasgow

    The XMRV blood donation ban story should also be appearing as the lead item on the BBC health website at around midnight tonight (Thursday)

    Please note that the MEA has not written the copy for the BBC website item and at the time of writing we have not been sent the embargoed text to comment on.

    Tony Britton
    Publicity Manager, The ME Association
    Tel: 01406 370293 Mob: 07880 502927

    PS Theres a link to our fairly long summary of the XMRV story so far up on our website at http://www.meassociation.org.uk/?p=2240

    And our correspondence with the Chief Medical Officer at the Department of Health about the blood ban is at http://www.meassociation.org.uk/?p=1611
  2. RivkaRivka

    RivkaRivka Senior Member

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    this is great. good work!
  3. Esther12

    Esther12 Senior Member

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    Always terrifying that it could be corrupted. Not online yet.
  4. Esther12

    Esther12 Senior Member

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    http://www.bbc.co.uk/news/health-11465723

    No mention of the Alter paper, just the Science papers and then the failed studies, but not too bad. It is absurd that they're arguing CFS patients are banned from donating blood, just after other countires have done so because of concerns about XMRV, but here in the UK the only motivation is concern for frail CFS patients.

    Good work ME association - thanks.
  5. LaurieM

    LaurieM

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    The BBC has now published the Blood Ban online:

    http://www.bbc.co.uk/news/health-11465723

    Thankfully the question of XMRV has been raised (although no mention of the Lo/Alter study etc).

    This hopefully contradicts the stupidity of saying the ban is in the interest of patient safety - an easy cop-out by the Health Authorities to ignore the Elephant in the Room called XMRV.
  6. LaurieM

    LaurieM

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    Esther - I must have been typing when you were posting.

    Although I am not a fan of the MEA (Myalgic Encephalopathy!. Saying that Australia, Canada and New Zealand took the UK's lead in Blood Bans (how did that happen?), and some other issues), but I admit they deserve some credit for getting the XMRV question into this article.
  7. Esther12

    Esther12 Senior Member

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    I hate it when that happens. It's worse when it's a really long post which is rendered pointless before you even get to post it.
  8. Mark

    Mark Acting CEO

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    Thankfully I just narrowly avoided making the same mistake! :) Yeah, it's really gutting when that happens.

    Anyway: full text just for the heck of it...

    ME patients face UK ban on donating blood


    Patients with ME will no longer be able to donate blood in the UK under new safety guidelines.

    Officials say the ban, starting on 1 November, is designed to protect the health of people with ME - also known as chronic fatigue syndrome.

    But the ME Association says the move is motivated by concerns that the illness may be caused by a virus similar to HIV that can be passed on via blood.

    Prior to the ban ME patients could give blood provided they were in remission.

    But the cyclical "relapsing-remitting" nature of this chronic condition means people can become ill again.

    NHS Blood and Transplant says the ban is "a precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood".

    They say the move brings ME blood donation policy into line with other relapsing conditions or neurological conditions of unknown or uncertain origin, such as multiple sclerosis and Parkinson's Disease.

    But the ME Association believes there is another reason for the ban - to protect blood recipients from a potentially blood-borne illness.

    Although they agree with the ban, they say the public should be made aware of all of the reasons for it.

    Experts do not know what causes ME.

    But US scientists recently linked the condition to a retrovirus - known as XMRV - after finding it in the blood of many patients.

    Viral infection

    The Whittemore Peterson Institute team found XMRV (xenotropic murine leukemia virus-related virus) in 67% of ME patients compared to under 4% of the general population.

    However since the 2009 discovery, published in the journal Science, other research teams, including experts in the UK, have failed to demonstrate such a link.

    A spokeswoman from NHS Blood and Transplant said: "Currently there is no epidemiological evidence of a link between XMRV and CFS in the UK."

    Although the evidence is patchy, the ME Association say it is enough to advise caution and recommend a ban on blood donations from ME patients.

    The American Association of Blood Banks put in place a similar blood ban in June of this year as an interim measure until the true risk of transfusion transmission of XMRV is known.

    The ME Association's medical advisor, Dr Charles Shepherd, said this was a well-judged approach.

    "In the current state of uncertainty about a possible viral link a ban is a perfectly sensible measure to take in case it is caused by a retrovirus."

    He said the UK ban should not leave a big gap in the blood donor pool.

    "Although people with ME often want to donate blood, they make up a small number of the many thousands of donations the NHS receives each year."

    Seven thousand units of blood a day are needed to meet the demand of NHS Blood and Transplant alone.

    The ME donor ban applies across all four of the UK's Blood Services.
  9. VillageLife

    VillageLife Senior Member

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    A good day! :)
  10. Mark

    Mark Acting CEO

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    Nowhere to comment on the BBC article of course, but there has to be a decent chance the story will be covered by other UK news sources that DO allow feedback, since this does represent the official announcement of the blood ban that we've known about for ages...which is a news story...

    I have to echo what others have said: Well Done and Thank You MEA !!!

    Whatever else anybody else may say about the MEA, and however much I may wish them to say more, they have worked on the blood ban and got this little story out there, which is more than we managed in relation to the UK news blackout on the Alter/Lo study, and their line in this story is robust and well-stated. In particular...

    Now I think that most people reading those two sentences will be rather more inclined to believe the MEA's view than the obviously bullshit line of the "officials", which then implies that the "officials" are being misleading and downplaying the story...which is a good thing for people to realise, and it will come as no shock to any sane person in the UK that "officials" are spinning the story. That's all great stuff IMO.

    Man oh man, and the discovery of a retrovirus in our blood is a pure coincidence I guess - what a load of utter crap! Who on earth is going to swallow that one? People who don't know about the retrovirus yet, I guess...

    Very, very good. Quite right.

    When the authorities treat the population like children, the population is right to regard them with the appropriate levels of disrespect. Is it any wonder we don't believe a word you say? "Democracy"? PAH!

    Now we get to just how pathetic and junior-school level the report is, however. Not exactly in-depth reporting, is it?

    And while "other research teams have failed to demonstrate such a link", there's still a blackout on the news that other research teams (Lo/Alter) have demonstrated such a link...and what about those reports from the XMRV workshop from still more teams that have confirmed the link?...too much detail to confuse the kiddies with at this stage perhaps?

    Make that "a liar from NHS Blood and Transplant". Surely they are aware of Dr Mikovits finding of XMRV in the blood of UK ME patients? Is the "epidemiological" inserted to cover backs by making this arguably true by saying Dr Mikovits' UK study isn't "epidemiological" evidence? Or just to sound clever? Either way: this is a lie.

    Hmm...so one day they might lift this "interim" measure if XMRV doesn't pan out? I think not...

    And will the readers be intelligent enough to wonder why the US ban is an "interim" measure related to XMRV, whereas the UK ban is a measure to protect patients' health? I wonder...

    I'd have liked to see the MEA go one step further and say something like this:

    "Blood donation by ME patients is, and always has been, a very bad idea anyway. Quite apart from the low blood volume observed in many patients, and the fact that patients are far too sick to be taking risks like this, when the cause of ME remains unknown, and the condition is so serious and lifelong, it just never made sense for patients to give blood.

    Would you want to receive blood from somebody with a severe illness of unknown cause? From somebody with lifelong neurological and immunological dysfunction that we don't understand? Does it worry you that these patients have been allowed to give blood for the last few decades?

    It's probably true that very few ME patients gave blood anyway, since most of them know they are sick and know they may very will have something serious in their blood. And many of them are permanently housebound or bedbound, or struggling to survive on their own without any support, so popping out to give blood isn't exactly at the top of the agenda.

    So this blood ban may make a marginal difference to ME patients who have been managing this, like everything else, for themselves all these years. But it's official at last, and it's long, long overdue."

    That's what I'd like to see them say. But I think we should all recognise that, sad though it is, compromised positions like those taken by the MEA are sometimes necessary in order to have any kind of political voice at all. So today it would be churlish, I think, to criticise them, because they have achieved something significant, and we should just thank them for it.

    Of course, the whole thing probably comes just a few hours before we learn how XMRV and PMRV work together, and probably only a matter of weeks or months before the truth is finally revealed anyway, which makes the whole thing a bit late in the day, and if so then the blood ban will look rather like a very belated ass-covering exercise...but we shall soon see...
  11. LaurieM

    LaurieM

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    Some good points Mark.

    One major difference it will make to ME patients is that we can now say to the doubters including our GPs that 'My illness is real because I cannot give blood' - unless the Weasel and his sheep can show how to pass a psychological illness via blood!
  12. Marco

    Marco Old blackguard

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    Near Cognac, France
  13. xrayspex

    xrayspex Senior Member

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    and if its a psychological problem they shouldnt reinforce those illness beliefs by saying pwc are too frail to give blood, they should be saying, yes you can, you can do it!
  14. Sasha

    Sasha Fine, thank you

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    That story allows comments - it needs the further successful studies pointing out. I am ill today and going back to bed now - can anyone respond?
  15. Kate_UK

    Kate_UK Senior Member

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    I am trying to write a comment about the Alter/Lo paper, something like,
    "The article says "other research teams, including experts in the UK, have failed to demonstrate such a link" but a paper was published in August by Harvey Alter........."

    and that's as far as I got, can anyone help me find the quote from Harvey Alter, I know he said something about his paper backing up the 2009 paper, but I need to get the quote accurate.
  16. Sasha

    Sasha Fine, thank you

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    How about here, which includes:

    • "The data in the Lombardi, et al. Science manuscript are extremely strong and likely true, despite the controversy," was one comment on the XMRV findings reported by Alter in Zagreb.

    • "Although blood transmission to humans has not been proved, it is probable.

    • "The association with CFS is very strong, but causality not proved.

    • "XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3% to 7%."

    • "We (FDA & NIH) have independently confirmed the Lombardi group findings."
  17. helsbells

    helsbells Senior Member

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    I usually do the red button news on the BBC and was really surprised to see it on the first page, even in the brief precis the sentence from the MA saying it is more likely motivated by the the link to a HIV type virus was in there. I know it is an awful thing to say but is that is the phrase which will make people sit up and take notice and I agree with Mark people in the UK will not straightforwardly believe the establishment regarding denials.
  18. Sean

    Sean Senior Member

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    What a bunch of crap. Suddenly they are so concerned about our welfare, about our problems with blood circulation and volume, etc...?

    Bollocks they are. They just don't want to admit the real reason for the ban.

    He he. :D
  19. Marco

    Marco Old blackguard

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    Near Cognac, France
  20. Kate_UK

    Kate_UK Senior Member

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    Thank you Sasha, but now the BBC comment box has disappeared!

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