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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

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. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Hey!!! I'm a cat! How rude. :tongue:
  2. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    102
    London, UK
    Fascinating. We need to explore this more fully. Firstly I actually feel better when giving blood (e.g. for tests), so the first reason doesn't apply to me or many others with ME/CFS. So we are left with the second reason - causes not fully understood, precautionary measure to protect blood supply. So is the UK government saying that ME/CFS could be caused by an infection? Are they really saying that? If so how does their proposed treatment of CBT/GET square with this?

    There seems to be a major contradiction here which needs to be exposed.
  3. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Julius, ay,yi,yi!!! a million apologies! Catnip and a can of sardines for you! (I have three cats, myself....no excuses...they like cockroaches and geckos...would you like one of those?)
  4. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Mmmm......I'll take a large order, to go, please.
  5. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    It appears that there was some suspicion of a blood borne virus being the cause of ME in 1991. The minutes of a meeting of the UK Advisory Committee of the Virological Safety of Blood has the following:

    "31 Dr Pickles said that it had been suggested that the Department should introduce routine testing of blood donations for ME to prevent transmission of the infection(s) responsible for this disorder. It was feasible that infection may be transmitted to transfusion recipients, a small proportion of whom might develop chronic symptoms, themselves.

    "32 It was agreed that the evidence available did not support the introduction of a test. The Committee, however, would continue to watch any developments with interest."

    More information is available on ME agenda.
    http://meagenda.wordpress.com/2010/02/13/donations-and-transfusions-safety-of-the-uk-blood-supply/
  6. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Thanks, V99. I have submitted this question.

    The Canadian Blood Service has just announced that, as a precautionary measure against potential contamination from XMRV (the newly discovered human retrovirus), it is prohibiting the donation of blood by people who have/had ME (or CFS) (one of the diseases with which XMRV is associated - another being prostate cancer). The UK Government's current position is that people with ME can donate blood when they are 'fully recovered'. Given that (a) there is no scientific evidence that people do 'fully recover' from ME and (b) that a retrovirus (akin to HIV) can not be eradicated from the host's DNA, should this country not follow Canada's cautionary lead and ban people with ME from donating blood - without exception? How would each of the parties handle this emerging health issue if they were in power? Given that this pathogen could have the same impact (both from a health and an economic perspective) as HIV, Hep C and vCJD, should it not receive cross-party, bi-partisan attention?
  7. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I agree. Blood Services deals with a number of threats to the blood supply and they balance that with the very real need to encourage people to donate and the ongoing anxiety of people who are dependent on blood products for their survival. It's not always an easy thing to do but it's what they do and, for now, I think they're doing it well.

    There is a 30 question form people fill out which covers a number of issues: potential HIV exposure, CJVD, Hepatitis C, various drugs and medications along with other problematic issues. It's possible they will simply begin to screen for ME/CFS at that level. Our agenda aside, that may well be the most appropriate way for them to deal with this. The media interest in XMRV will do the rest and the reaction of CBS becomes evidence of seriousness. I think this is a responsible way for CBS to respond to what is still a potential link only.

    I don't want to become a thorn in the side of people who are behaving responsibly and in a timely fashion. After all, we can use all the allies we can muster. There are plenty who are not behaving responsibly and I would like to put my thorny energy there. ;)
  8. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    This is a beautifully worded question!
  9. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    I agree. There seems to be an intentional twisting of the facts on this point. He writes:

    In the paper, researchers found that many of the 101 study subjects who suffered from the condition also had been infected with the retrovirus.Meanwhile, virtually none of the studys healthy subjects showed any trace of it in their bloodstream.

    How many equals "virtually none"? Is that 3.7% or something less. Let's say it's one person which is esentially 1%. That doesn't seem insignificant but I expect the ideas is not to scare people.

    Sorry, I think that time is past. I for one want public outcry at this point. No more sweeping this under the rug. We need the help of the general public. Lives may be at stake and the only report is a benign-sounding news report. Huh.

    They've taken a good step but with no education to reach Drs. and undiagnosed patients (and other things mentioned in this thread) there is much left to do to truly protect the blood supply.
  10. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Who needs scientific evidence when you have 'wessely-ific evidence'?
  11. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
  12. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
  13. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hey Otis,

    I think they are showing precaution. Even though the link is not yet welded in place they are treating XMRV with the same seriousness they treat HIV, Hep.C, CJD, Malaria and other horrible, often oncogenic, sometimes swiftly deadly or horribly disabling entities.

    This is a very big step for an as yet unproven connection. More than this would be hysteria. This is just right!
  14. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Agreed. And thanks for your previous compliment. I hope the BBC likes the question as much.
  15. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
  16. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Let me take a step back and say that this is a great first step and I understand that given the current lack of a proven connection between ME/CFS and the presance of XMRV it's especially remarkable.

    But for me the balance between not creating a panic (and god forbid it's a false alarm blamed on CFS) and sending an accurate message which would likely cause some public concern isn't black and white. And it's not all about CFS, prostate cancer is a valid concern as well. I admit to playing devil's advocate, mostly because as I read the article it was crafted to downplay concern and did not to convey what we know about XMRV if the Science article is the measuring stick. I did a poor job of making this point. I don't want a panic but if some public concern pushes testing/screening forward more quickly then I think everybody benefits.

    And finally I tried to make the point that if people were being asked to not donate that those people need an accurate diagnosis, and that means getting people and Drs. better able to translate symptoms to a diagnosis. That bit has nothing to do with XMRV other than keeping the undiagnosed from donating blood.
  17. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hey Otis,

    I agree with you - testing and screening really can't come fast enough for everyone. And, more people with this virus is not a good thing to contemplate!!!

    It's more about who takes the message forward, in what way, and when, that we are discussing. The Canadian Blood Services reaction to the XMRV threat is right on the money as far as I can tell. A reasonable and considered response cannot be dismissed as being alarmist. This is a reasonable and considered response.

    I think it's a hugely important step in recognizing XMRV as the threat we all believe it to be. Blood Services work together internationally producing and distributing blood products. It must, of necessity, be a very rational process. XMRV being recognized, and calmly discussed in relation to ME/CFS, in this context is huge!

    HUGE!
  18. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
  19. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    The European Society for ME (ESME) is asking whether there should be a pan-Europe ban on people with ME donating blood.

    http://www.facebook.com/?ref=home#!/pages/ESME-European-Society-for-ME/326113349124?ref=ts

    You can join the debate there, if you wish - and perhaps write to your EU representative about the matter.

    In the UK, Caroline Lucas, MEP for the Green Party, is very pro cleaning up the blood supply carolinelucas@greenmeps.org.uk

    Also in the UK, you can find your local MEP here http://www.europarl.org.uk/
  20. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Stuart,

    Darn! You beat me to this.!

See more popular forum discussions.

Share This Page