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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. Esther12

    Esther12 Senior Member

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    I sounds like they're trying to downplay the change. Anorexia is a relapsing condition - are former anorexics banned from giving blood? (serious question that sounds silly - I really have no idea, and it seems like such a silly q I'm not able to find anything on the internet).
     
  2. Sasha

    Sasha Fine, thank you

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    Hi Esther - that's an interesting point. I don't know about anorexics - I'd be surprised - but so is depression a relapsing condition and I've never heard of people who've ever had clinical depression aren't banned.
     
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Love it Min!!!

    Good grief, I've had more laughs on this forum in recent weeks - despite the high tension of waiting for PNAS paper and wall of silence UK media response - than in the past 14 years I've had this illness.

    My particular favourite was the 'I'm too sexy for this thread' comment, but I can't remember who posted it now.

    Also, you Americans have great exclamations - eg. 'Dang'! (?George). We don't have this in the UK and its kinda endearing!

    Thanks everyone. Whatever else comes out of all this I shall take away treasured memories and laughs.
     
  4. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Yes George you did, you really did! I think we all did. Its a strange kind of miracle when the Universe delivers what you always wanted ...
     
  5. Marco

    Marco Old blackguard

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    What about the complete illogicality (is that a word?) of this statement.


    What possible harm can donating a pint of blood do to anyone, regardless of whether or not they have a relapsing condition?

    (actually I was a twice a year enthusiatic blood donor before ME and fainted the first time I tried it after onset - but that's another issue perhaps specific to ME).

    Secondly, ME has been a relapsing illness for at least 50? years. Why the sudden rush to 'bring it into line'.

    Doublespeak 'par excellence'.
     
  6. George

    George waitin' fer rabbits

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    I can't believe I'm seeing the words neurological and ME/CFS in the same sentence. Dag nabbit the old Weseal I mean Dr. Wessly must be packing for a long vacation in Bermuda. (hopefully in the Triangle that is, big grins) Me, I figure after seeing that sentence I better sign up for aviation lessons. I hear that pigs are a great mode of transportation.
     
  7. jackie

    jackie Senior Member

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    dag nabbit is right!
     
  8. serenity

    serenity Senior Member

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    this seems like very big news yes?
    i wish America would follow...
     
  9. Quilp

    Quilp Senior Member

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    Thank goodness at last !

    I can't help thinking that this should have happened after the Science paper. Indeed many of us were stating just that. I am not by nature a cynic, but I have to say that I am not the same person I was.
    I can't escape this inexorable feeling that the reason for not applying this ban immediately following the Science paper was political. It would have given this illness the legitimacy it has never had. They will turn to the Alter paper as being precipitive, but even before the Science paper there were over 4000 papers detailing biological fundamentals.
    This is in itself a big story, but I wonder if the media will reflect this ? No coverage whatsoever and one has to question why. But for many like myself any silence will be defeaning.
    I am looking forward to reading what Wessely has to say. I hope he keeps on defending the indefensible, because this will only serve to further his marginalisation. He no longer holds the upper hand, and this, in my opinion, is the beginning of the end for him. Science is passing him by like a taxi driver that refuses his fare. Of course others must follow, the food chain extends upwards and higher than many would believe.

    Kind regards, Mark

    Just a quick segway. If I ever wanted to subdue an enemy, M.E would be my weapon of choice.

    Kind regards, Mark
     
  10. George

    George waitin' fer rabbits

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    I think Wessely et al will be taking a vacation with all the ill gotten gains from those insurance companies. (grins) If they're smart they will all move to Switzerland where they can not be extradited.
     
  11. Sherby

    Sherby Sherby

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    1st of November. I wonder whats going on behind the scenes until then.
    Its great news but the doubtful side of me would rather see an official
    announcement from The Dept of Health on one of there own websites.
    Still not heard from Slymon Weasel or Peter Will Have to Fight.
    I presume that is good news.
     
  12. Rrrr

    Rrrr Senior Member

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    well, the UK is lagging far behind the US in media coverage of the NIH/FDA/Harv paper, but is WAY AHEAD of the US on this front. the US is only "discouraging" blood donations from people with current ME/CFS.

    congratulations all UK ME/CFS folks! this is indeed a big day.
     
  13. Tom

    Tom windows exterminator

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    Why November 1 st ?

    Polititans on holiday.
    Need to educate staff and update website etc.
    Contact all potential M.E/CFS donors to advise them not to go for their own good ???

    May Not , Should Not , Nevers

    You should not give blood if:

    You've already given blood in the last 12 weeks (normally, you must wait 16 weeks).

    You have a chesty cough, sore throat or active cold sore.

    You're currently taking antibiotics or you have just finished a course within the last seven days or have had any infection in that last two weeks.

    You've had hepatitis or jaundice in the last 12 months.

    You've had a tattoo, semi-permanent make up or any cosmetic treatments that involves skin piercing in the last 6 months.

    You have had acupuncture in the last 4 months, unless this was done within the NHS or by a qualified Healthcare Professional registered with a statutory body.

    A member of your family (parent, brother, sister or child) has suffered with CJD (Creutzfeld-Jakob Disease). To view the position statement on CJD click here.

    You've ever received human pituitary extract (which was used in some growth hormone or fertility treatments before 1985).

    You have received blood or think you may have received blood during the course of any medical treatment or procedure anywhere in the world since 1st January 1980.

    You may not be able to give blood if:

    You've had a serious illness or major surgery in the past or are currently on medication. Please discuss this with the clinical staff. The reason you're taking medicines may prevent you from donating.

    You've had complicated dental work. Simple fillings are OK after 24 hours, as are simple extractions after 7 days.

    You've been in contact with an infectious disease or have been given certain immunisations in the last four weeks.

    You're presently on a hospital waiting list or undergoing medical tests.

    You do not weigh over 50kgs (7st 12).

    If you are unsure please call our 24 hour donor helpline on 0300 123 23 23.

    Pregnancy

    You should not give blood if you are pregnant or you are a woman who has had a baby in the last 9 months.

    Travel abroad

    Please wait 6 months after returning from a malarial area before giving blood. Please also tell us if you have visited Central/South America at any time. (Those who've had Malaria, or an undiagnosed illness associated with travel, may not however be able to give blood.)

    If you are unsure please call our 24 hour donor helpline on 0300 123 23 23.

    West Nile virus

    Have you been to or plan to go to CANADA or the UNITED STATES this Summer? If yes, please click here, as it might affect you giving blood.

    The special problem of HIV and Hepatitis viruses

    * Every single blood donation is tested for HIV (the virus that causes AIDS) and hepatitis B and C.
    * Infected blood isn't used in transfusions but our test may not always detect the early stages of viral infection.
    * The chance of infected blood getting past our screening tests is very small, but we rely on your help and co-operation.
    * People who carry these viruses may feel healthy for many years.

    You should never give blood if:

    You have ever had syphilis, HTVL (Human T - lymphotorpic virus), hepatitis B or C or think you may have hepatitis now

    You're a man who's had sex with another man, even safe sex using a condom. For more information click here.

    You've ever worked as a prostitute.

    You've ever injected yourself with drugs - even once.

    You should not give blood for 12 months after sex with:

    A man who has had sex with another man (if you're a female).

    A prostitute.

    Anyone who has ever injected themselves with drugs.

    Anyone with haemophilia or a related blood clotting disorder who has received clotting factor concentrates.

    Anyone of any race who has been sexually active in parts of the world where AIDS/HIV is very common. This includes countries in Africa.

    Please do not give blood if you even think that you need a test for HIV or hepatitis, or if you had sex in the past year with someone you think may be HIV or hepatitis positive.

    Never give blood to get an HIV test. If you're worried, please ring the National AIDS/HIV helpline on 0800 567 123.

    Donors can get further information about these and other issues by contacting the special national blood donor helpline on 0300 123 23 23 (local call rates), open 24 hours a day. Information is provided on who can and cannot give blood, how to become a blood donor and where to donate.

    Tom
     
  14. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Good grief, there are an awful lot of exclusions aren't there.

    The one that surprised me the most though was, that you may NOT give blood if:

    'You have received blood or think you may have received blood during the course of any medical treatment or procedure anywhere in the world since 1st January 1980'.

    Crikey, why not? If they had specified 'Anywhere in the world other than the UK' for eg, it might have been less surprising as the UK authorities can only guarantee the safety of their own supply, (as would the Americans for eg if it was their blood supply - this is not meant to be a xenphobic commment.)

    Is it likely that blood donations become more and more incompatible the more people they've 'travelled through' (DNA etc coming into contact with other DNA etc) - greater risk of antibodies and extreme reactions? - Not v scientifically worded I know, but does anyone know why this might be? I might write and ask them.

    This one stipulation alone would potentially exclude a lot of donors.
     
  15. LaurieM

    LaurieM

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    Great news indeed - but still not a mention of this in the UK press :worried:

    So I have added a comment to the article about STDs that was used to pass the message about the Alter/Lo et al paper. At least it will now show up in search engines with the Guardians name attached :rolleyes:

    http://www.guardian.co.uk/news/datablog/2010/aug/25/stds-england-region-gender-ethnicity-statistics
     
  16. xanadu

    xanadu

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    The UK 'deferral' was put in place in 1989 when a viral cause was still suspected, and has never been lifted. Is that true of any other country? In fact the 20-year deferral has often been raised by pwME as evidence that the Blood Service and DoH suspected a transmissible infection. pwME were however allowed to donate when they considered themselves recovered. That option is now being removed.
     
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Original Letter (copy) from DoH to MEA re UK ME/CFS blood donations Ban from Nov 2010

    Hi Cort or any Moderators,

    Dr Shepherd has kindly forwarded a copy of the original letter sent to him & the ME Association by the UK's DoH - outlining the NEW regulations to ban blood donations from all UK ME/CFS patients, past and present, from November 2010.

    He suggested we repost here as it may be of help to US advocacy organisations for introducing a similiar legislation in America (eg if we resend to CFIDS also).

    However, not being technically literate, I can't unfortunately get the attachment to repost here. Could someone PM me with a private email address and I can forward it on to you please?

    Hopefully the DoH here in the UK will issue their own Press Release or Statement about this once it comes into effect here in November this year.
     
  18. twopenneth

    twopenneth

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    Why a lifetime ban, surely several courses of GET, CBT and LP can cure and rehabilitate CFS/ME sufferers and rid everyone with the XMRV family of retroviruses. Not!
     
  19. Dainty

    Dainty Senior Member

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    Sounds good, pictureofhealth. Hope that gets posted soon!

    As for this:

    I suspect it's because of potential delayed and/or long-term potential adverse effects after a transfusion, and/or the concept that the more different kinds of blood you transfuse the higher the risk of adverse effects for the recipient. Some studies also indicate that transfusions have immunomodulatory effects (fun word!) making a person more prone to infections and cancer, so that might play into it as well, i.e. with each transfusion the immune system gets a little more out of wack, and you don't want to pass that on to someone else...

    I'm just guessing here; I'm no expert. But the research I have done into blood types was enough to convince me that if I ever needed major surgery where I might require a transfusion then having them save my own blood for it would be well worth the extra cost, since there are so many sub-types and such that it's the healthiest option by far--you get the closest match that's the least likely to cause an adverse reaction.

    But I digress. This thread is great news.....I threw back my head and laughed. Then I sighed. We're making progress, but since things like this should have been done years ago it's a tired victory.
     
  20. twopenneth

    twopenneth

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    Is this what you want?

    http://www.facebook.com/group.php?g...=mf#!/topic.php?uid=112160662164471&topic=119
     

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