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NEW! - UK DEPT. OF HEALTH to BAN ALL ME/CFS BLOOD DONATIONS from NOV 2010 (from MEA)!

Discussion in 'General ME/CFS News' started by Otis, Aug 13, 2010.

  1. Otis

    Otis Señor Mumbler

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    UK Blood Services Set to Ban ME/CFS Sufferers from Donating on a Lifetime Basis

    According to Dancing with the Sandman (click here for the entire blog post) Mary Heaton of the Department of Health said:

    "In the absence of any infectious cause of CFS, people with this relapsing syndrome are currently excluded from donating blood while they feel unwell, in order to protect their own health. The UK Blood Services will shortly be amending its criteria to exclude such people from blood donation on a lifetime basis, bringing them in line with the practice of not accepting donations from people with other relapsing conditions. Whilst the purpose of this is to protect the donor's health from any possible harmful effects from donating blood, it will also minimise the likelihood that donations from people who have ever suffered from CFS could enter the blood supply."

    A full letter from Ms. Heaton from the Department of Health in the blog post. She deftly dodged the question of XMRV. Ole.
  2. urbantravels

    urbantravels disjecta membra

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    OK, is anyone feeling researchy enough to check the veracity of the statement that people with "other relapsing conditions" are currently excluded from giving blood on a lifetime basis in the UK, and if so, exactly what conditions are included in that ban?
  3. Otis

    Otis Señor Mumbler

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    Great question.

    I hope someone can research and report back. I'm going to lie down. Been sitting up too long. Quite a few interesting tidbits crossing my radar today. :In bed:
  4. Sasha

    Sasha Fine, thank you

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    Interesting question! It occurred to me to look at MS and I found the following on the (UK) Multiple Sclerosis Trust's website (here) (my bolding):

    People who have been diagnosed with MS cannot give blood. This is a blanket ban that applies to 'chronic conditions of unknown aetiology' and includes a range of other conditions such as rheumatoid arthritis.

    People with MS can be considered as organ donors.

    The reasoning behind this is based on the fact that the cause of MS is currently unknown. Until there is evidence to prove otherwise, it is considered sensible to avoid donations from people with MS when there may be something in the blood that is a contributing factor to developing the condition.

    As an organ transplant requires the consent of the recipient, they can be informed of any potential risks before they make their decision. The availability of organs is also limited and so any potential risks are weighed against the the consequences of not proceeding with the operation.

    In comparison, donated blood is relatively plentiful. It is also not possible to identify a donor at the point when the blood is being used, so any potential risks have to be screened out at the point of donation.​

    I thought MS would be interesting because it's a relapsing/remitting condition in which a viral aetiology is also suspected. And yet they're banned and we're not, even when a huge proportion of ME cases are clearly of acute viral onset. Insane.
  5. urbantravels

    urbantravels disjecta membra

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    Very interesting.

    If there was previously NO "lifetime ban" on ME/CFS patients giving blood, that means it didn't even count as a "chronic condition of unknown aetiology" (that's etiology in US English)?? Why ever not?

    Ah, because they *knew* its etiology in the UK. "Psychosocial." That would be no hindrance to giving blood as long as you "felt" ok. Right?

    Perhaps it is now "considered sensible to avoid donations from people with" ME/CFS because there may be "something in the blood" after all??
  6. Sasha

    Sasha Fine, thank you

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    I think that must be the thinking - I can't otherwise account for their position.

    Yup, aetiology = etiology (potayto, potahto...). We've got a lot of spare A's laying about! :Retro smile:
  7. Otis

    Otis Señor Mumbler

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    Aye! :Retro smile:
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I am curious to know why they have changed their mind, especially in the wake of all the negative European papers. Did something specific trigger this? Where is the overwhelming evidence that XMRV is contagious, from a scientific point of view, I mean?
  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Villagelife, sorry you had to go through all that. I am thankful I was not forced into CBT or its like here.
  10. gu3vara

    gu3vara Senior Member

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    I've been forced into a 3 months CBT and gym exercice program 3 times a week while I could barely stand on my feet and knew I simply couldn't do it.

    It's been 3 months of pure hell and I never felt worse in my life....all I did during that time was to go there, do the exercices and return to my house in horrible pain and thanked god that I had a day and half before the next appointement. I would cry to my gf saying that they were about to kill me if it kept going.

    I'm not even in the UK, I'm in Canada and was force to do that otherwise I would have lost my disability insurance, how great is that!

    The so-called experts there told me there were scientific studies supporting their program for CFS. After 3 months of a constant decline in my physical performance, insurers decided to stop the program. It took me a good 3 months for the massive inflammation (brain inflammation was really bad) it caused me to settle down a bit.

    Horrors stories are everywhere, that was mine...

    Graded exercise therapy is total bullshit for CFS and CBT is nothing more than a tool to try to cope with it.
  11. paddygirl

    paddygirl Senior Member

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    Gu3vara, I'd sue for that. It's repulsive what they did to you, and it made you so much worse.

    There is a thread on legal action somewhere, class action as opposed to going it alone.

    Take care

    Paddy
  12. Mark

    Mark Acting CEO

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    Aw, that's so sweet of her, I'm so glad Ms Heaton made it clear that this sudden change of heart is for our own good because we're not up to giving blood anyway.That's a rational ground for a lifetime ban on giving blood if ever I heard one. I think it's probably just coincidence that this policy change is happening at the same time as an infectious exogenous retrovirus is confirmed in us and in the blood supply. I'm sure they'd have told us if it had anything to do with that...

    Plus, being health authorities, the idea that they would deliberately lie to us or mislead us about such an important matter is for the sort of gullible people who believe all this new-fangled evidence about people eventually dying as a result of the so-called "Camelford Water-Poisoning Coverup" (this mean-spirited later evidence having arisen from a series of investigations undertaken at great stress to the victims despite thoughtful warnings in the press from their psychologists), rather than believing Prof Wessely's far more imaginative and comforting earlier work "The Legend of Camelford".

    No, these health authorities are more likely just what they claim to be: innocents who haven't a clue what ME/CFS is; this timing is all just another weird coincidence accompanied by bizarre quotes - life's absolutely bloody full of 'em eh, it doesn't mean anything, stoopid!

    And anyway, I'm sure all those select few Clever and Important people, who know what's really going on, but are bound and gagged, hard and fast, by their righteous code of Good And Responsible Scientific Practice, not to tell anyone anything (apart from, sometimes, other scientists of course, and other people who can keep secrets, I guess regulatory types sometimes) - I guess those chaps will tell us all what the big secret is, and what the f**k all this has been about for the last 3 months, when they decide it's time...meanwhile we should all let them get on with their secret plans for our protection...and of course stop calling them a conspiracy - nobody likes being called that...especially when they haven't got a clue what's going on...
  13. Mark

    Mark Acting CEO

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    And yes Gu3vara, VillageLife, everyone who is in your position, the time to launch the equivalent of a class-action is definitely after this second study, the confirmation study, is published - that's the starting gun...countdown (in weeks) believed likely to stand at either 3, 2, or 1...(not for the first time, of course...)...it might be nice to announce or publicly launch a group for such action on the back of the PNAS news stories...
  14. Marco

    Marco Old blackguard

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    What a very responsible statement.

    Graded exercise therapy is one thing, but a 20 minute donor session with a friendly nurse followed by a nice cup of tea and a bikkie could really send you into a permanent tailspin.

    I'm so grateful the health authorities are looking after our best interests.
  15. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Misinformation for the masses

    So, this lifetime ban is for our own good then is it Ms. Heaton ?

    This doesn't look like a very logical evolution of your previous position - advising ME/CFS patients not to donate when they are feeling unwell.

    Why didn't you simply extend this advice to apply for life (for our own good you understand) ? But that would leave the door open for a potentially infectious retrovirus to continue to infect the nation's blood supply wouldn't it ? :eek:

    No, I don't buy this at all, but the wider public will probably swallow it hook, line and sinker ......... for the time being anyway.

    And when the Alter /Lo paper finally comes out, you will be able claim that you have already implemented a ban on blood donation - well good for you. I'm very impressed by the speed and efficiency of your actions :victory:

    TGOP :Retro mad:
  16. garcia

    garcia Aristocrat Extraordinaire

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    The question everyone is asking is WHY NOW????

    Why are they suddenly taking ME/CFS so seriouly?? I think we all know the answer. Begins with X, ends in V, with an MR in between.
  17. Wonko

    Wonko Senior Member

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    i thought we were just whinny mad people - how could giving blood ever possibly be bad for our health? regadless of any delusinlonal feelings of slight unwellness

    does this mean I'm not mad any more?
  18. VillageLife

    VillageLife Senior Member

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    Now the UK are taking STRONG action and about to BAN us for life from donating blood, are we now aloud to ask for some treatments for our illness ? Some proper help & support!
    Or are they going to say.....sorry we about to ban you from donating blood for life....but sorry we still cant help you.
  19. V99

    V99 *****

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    Just read this. I am absolutely seething right now.

    If we can find where it says in official documents the following, that would be helpful:
    because the disease is chronic and it is supposedly of unknown aetiology. The Government has also repeatedly stated that they accepted the WHO classification of the disease. They don't stand a chance.
  20. garcia

    garcia Aristocrat Extraordinaire

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    Diabetes is a chronic disease of unknown aetiology. Yet many of them are now allowed to give blood it seems:

    http://news.bbc.co.uk/1/hi/health/7637374.stm

    So there is no "blanket ban".

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