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XMRV Virus leads Canadian blood service to ban CFS donors

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Kati, Apr 6, 2010.

  1. Kati

    Kati Patient in training

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    I's been sent already unfortunately, but I see what you mean, I mean I don't believe that they held a press conference themselves, and I feel they want to tell this info very quietly so nobody notices.

    I would like them to make a public announcement, and send advisories to all the physicians in Canada with infor in Cdn Consensus.,


    and make sure the right information goes out there. - too brain dead to think anymore... Let me know if there is more you'd like to ask me and I may edit and send it somewhere else, Thanks, Kati
  2. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs


    Thank you again Kati

    Canadian Blood Supply Services ---NetCAD -- research facility at UBC that studies transfusion medicine

    604-221-5515 researchdonations@blood.ca


    glen
  3. ukme

    ukme Senior Member

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    What Koan said
  4. bullybeef

    bullybeef Senior Member

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    I have just sent the following email to a person I know at the UK Blood Society:

    If we can all send similar emails to our own countries blood supply organisations, I am sure this would move mountains.
  5. Noreen Martin

    Noreen Martin

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    This is a step in the right direction. Maybe the US will take this seriously and follow Canada's lead. They can no longer ignore this problem of chronic fatigue.
  6. Gerwyn

    Gerwyn Guest

    chronic fatigue of course is only one symptom associated with ME and formany not the main source of disability
  7. fred

    fred The game is afoot

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    Would UK people please consider writing to their local MP to ask if the UK Government is going to follow the Canadians' lead?

    You can find your local MP here.

    http://www.theyworkforyou.com/

    And the main party shadow health ministers are as follows.

    Andrew Lansley, Conservative lansleya@parliament.uk

    Norman Lamb, LibDem normanlamb@hotmail.com (he also has a Facebook page)

    Several LibDems (including Norman Lamb, Paul Rowan, Annette Brooke) have raised the issue of protecting the blood supply from ME / XMRV on various occasions during the last six months - as has David Drew, Labour MP for Stroud.

    Despite concerns being raised by these MPs (and The MEA and IiME), the UK Government maintains that pwME can donate blood when they are recovered.

    Please consider sending the link at the beginning of this thread plus the simple question of 'when will the UK government follow the Canadians' precautionary measure?' to as many MPs as you can.

    It is election time - they want your votes. We want our lives back.

    Thank you.
  8. Esther12

    Esther12 Senior Member

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    I thought the UK has already said that people with CFS should not donate blood? - A policy that long pre-dates XMRV.

    Please check on this before writing to anyone.
  9. Gerwyn

    Gerwyn Guest

    will do i will write later
  10. fred

    fred The game is afoot

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    Neither the UK Government nor the Chief Medical Officer has stated definitively that people with ME can never give blood.

    From The MEA (my emphasis).

    http://www.meassociation.org.uk/ind...e-and-blood-donation&catid=30:news&Itemid=161

    The Health Secretary has been asked to give reasons why people with ME may not donate blood. The request came in a written question from David Drew, Labour MP for Stroud, who has asked a stream of other questions about ME in the past few weeks (type 'Drew' into the search box to see some of the others).

    In a written answer provided on 10 March, Ann Keen (the parliamentary under-secretary of state for health) replied:

    "People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered. "

    The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients."
  11. V99

    V99 *****

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    UK
    The BBC are taking questions for the Prime Ministerial Debate.

    If enough of us ask questions about ME, perhaps we will get one through.

    http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm


    I asked, if they considered it to be a neurological disease, then when would they be treating it like one i.e. biomedical research and treatments, not psychological therapies like CBT & GET, which have repeatedly been shown to be of little benefit or dangerous.

    I'm sure others can compose this better than I.
  12. Esther12

    Esther12 Senior Member

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    Ta. I thought that the situation was the same in Canada, but have just seen they've banned anyone who has had CFS in the past too.
  13. oerganix

    oerganix Senior Member

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    I immediately contacted them about their "factual errors": calling it chronic fatigue instead of CFS. I told them this is ME by another name, etc. etc. Then I told them that 3.7% of "healthy normals" also were found to have XMRV, so their statement that "virtually none" other than those with "chronic fatigue" have it, is also in error. Their robot wrote back that if they find an error, they will correct it. We'll see... If no correction soon, I suggest others write them and bring it up again.

    The country that gave us the Canadian Definition should not be making this error, eh?
  14. Kati

    Kati Patient in training

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    Julius I wanted to express myself a bit better than what I did last night. While I felt it was a great thing that they decided to restrict their donors, I felt they did this very quietly and didn't even write anything on their website. My point of view is that if you are taking a stance, go all the way and explicitly explain what you are doing, make it clear!

    Being a RN, I know their communications has to reach all doctors, and I would like to see it being done right.

    I know my e-mail is not all honey!!! In one way, I am giving them a chance to express themselves to the media before papers publish whatever info comes their way.
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    It has been found in blood of people in UK. So letter that says it isn't would also have error.

    Tina
  16. julius

    julius Watchoo lookin' at?

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    Those of you in the UK, maybe a letter to the editor of the health page of BBC news would be interested in this story. ME was pretty hot recently, and a story of the Canadian gov't banning donors would probably get printed.
  17. oerganix

    oerganix Senior Member

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    Julius, or anyone, would you be willing to email this newspaper and remind them that it should read "chronic fatigue SYNDROME". I did earlier and they changed it in one place and left "chronic fatigue" in 7 more references to the "ailment". They also didn't change their error stating that Mikovits found no XMRV in controls, when in fact, they found it in 3.7% of controls, which is very pertinent to blood donation.

    The story has a blue box, top center, where you can click "report typo or correction". If this story is going to be forwarded around the world, I'd like it to be accurate.
  18. julius

    julius Watchoo lookin' at?

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    Canada
    Ok, taken care of.
  19. oerganix

    oerganix Senior Member

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    Good doggie. Thanks a bunch!
  20. julius

    julius Watchoo lookin' at?

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    I always wonder about how much fanfare is really good. My first thoughts always go to the 'boy who cried wolf' story, or even 'henny penny (the sky is falling)'.

    Given that most people are already cynical about us and our disease, maybe too much noise will just annoy them further. Also, if things in XMRV research take a turn for the worse, we may be chased right out of the village.

    I feel like this move by the gov't is a really positive one, and we should let it seep in to the public psyche naturally.

    I realize I could be totally wrong here though, so any thoughts or comments are welcome.

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