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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. V99

    V99 *****

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    And if they claim there is a blanket ban. Well, there you have it. ME/CFS patients are not treated like every other patient.
  2. garcia

    garcia Aristocrat Extraordinaire

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    Exactly. Which must mean there is more to this ban than simply being a "chronic disease of unknown aetiology". What are they not telling us?
  3. V99

    V99 *****

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    Who is a good UK journalist to contact on this?
  4. VillageLife

    VillageLife Senior Member

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    this whole thing has shocked me, it feels like there saying something is very very wrong but at the same time there not prepared to give much away.
  5. Sunshine

    Sunshine Senior Member

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    V99, there are no journalists in the UK with access to the mainstream media due to the censorship of the media by science advisor to the media Simon Wessely himself.

    Public education on CFS/ME goes via Simon Wessely (and journalists linked to him) and nothing will be published that points towards XMRV being associated with CFS/ME as officially there is no XMRV found in CFS/ME people in the UK according to Wessely and the BBC, by chance due to his own study that could not detect XMRV in old blood samples in his psychiatic patients who feel tired.
    http://news.bbc.co.uk/1/hi/health/8441491.stm

    Obviously the media didn't print that, and the public presume McClure could detect XMRV in a known positive sample which she couldn't.

    There is hope though.

    Mindy Kitei is the goddess of 'breaking news' CFS journalism on the Internet and has been following the condition for years.
    www.cfscentral.com

    Mindy's writings linked here on aboutmecfs.org and facebook's pages from the WPI, are quite an effective source of getting information like this UK blood issue on donating out to the public when the media continues to marginalise those with ME.
  6. Min

    Min Senior Member

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    Both the Daly Mail and the Independent have, at different times, published articles about M.E. being a physical illness. As far as i know they were the only papers to publish the WPI's initial findings of XMRV (the Guardian just published the results of the UK none-replica study for which Wessely supplied his feeling-a-bit-tired patients.)
  7. ukxmrv

    ukxmrv Senior Member

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    V99, the Editor of the Independant (UK) may be a good place to start if you have the strength/energy to do something.
    John Mullin

    Also the Scotsman (because of the Barclay brothers link)?
  8. V99

    V99 *****

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    I will contact the Independent and Daily Mail. Thanks guys.

    It will up to us then to fill in the gaps.
  9. Mark

    Mark Acting CEO

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    Hey good point, yes, Scotsman is good.
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    ME Association letter to Sir Liam Donaldson, Chief Medical Officer, DoH

    Dr Charles Shepherd of the ME Association (MEA)


    MAY BE REPOSTED

    Letter to Sir Liam Donaldson, Chief Medical Officer, Department of Health


    Dear Sir Liam

    ME/CFS and blood donation

    You will recall that I wrote to you on 27 October 2009 following
    publication of the paper in Science which contained the results of a
    research study that had found evidence of XMRV infection in people with
    ME/CFS.

    In this letter I referred to The MEA website statement on XMRV, which
    called for the current UK ban on people with ME/CFS donating blood while
    being symptomatic to be extended to include anyone who had suffered from
    the illness in the past but now appeared to be in remission or had
    recovered. We felt this was necessary given the uncertainty over
    prevalence, transmission and possible pathogenicity
    of this infection.

    Dr David Harper (Director General of Health Improvement and Protection)
    replied on 9 November 2009 by stating that this correspondence had been
    brought to the attention of the Director of the UK Blood Services Joint
    Professional Advisory Committee and that the situation was to be reviewed
    by the Standing Advisory Committee on Transfusion Transmitted Infections
    (SACTTI), who would be producing a risk assessment for the UK Blood
    Services and the Health Protection Agency. Dr Harper also stated that
    The MEA concerns had been brought to the attention of the Advisory
    Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the
    National Expert Panel on New and Emerging Infections (NEPNEI).

    Relevant part of the 2009 MEA website statement >>

    BLOOD DONATION AND XMRV

    In relation to blood donation in the UK, current advice is that people with
    ME/CFS who have symptoms, or are receiving treatment, should not donate
    blood.

    It would seem sensible in the short term, until we know more about
    transmission and pathogenicity of XMRV, to consider extending this
    restriction to people who have recovered from ME/CFS. It seems strange that
    many overseas countries have not followed the UK lead on blood donation and
    ME/CFS.

    The MEA has written to Sir Liam Donaldson, Chief Medical Officer at the
    Department of Health, regarding the possibility of XMRV being transmitted
    via human blood products and the implications that this has for blood
    donation.

    The CFIDS Association of America has been issued with guidance from the
    National Cancer Institute regarding blood donation in the US. The guidance
    can be read on the CFIDS website.


    We now understand, through a letter that is circulating on the internet,
    that a decision to extend the ban has been made.

    Letter in circulation >>

    Dear Ms xxxx,

    Thank you for your email of 19 July to Andrew Lansley about the xenotropic
    murine leukemia virus-related virus (XMRV) and chronic fatigue syndrome/
    myalgic encephalomyelitis (CFS / ME). I have been asked to reply on his
    behalf.

    The issue of XMRV was not specifically raised during the meeting on 20 July
    with campaigners from Tainted Blood. The National Expert Panel on New and
    Emerging Infections (NEPNEI) undertook a thorough assessment of the
    scientific data in June 2010 and concluded that although XMRV can infect
    humans, there is currently no evidence that it causes disease in humans.
    NEPNEI's view is that development of a robust diagnostic tool to detect
    infection accurately is a priority for further investigation of this infection.
    Further work is required to investigate which human tissues are susceptible
    to infection, the epidemiology of infection and whether this infection is of any public
    health significance.

    Both NEPNEI and the Advisory Committee on the Safety of Blood, Tissues and
    Organs have considered the current evidence and have recommended that no
    public health action is required at this time. However, the situation will
    be monitored closely.

    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.

    I hope this reply is helpful.

    Yours sincerely,

    Mary Heaton
    Customer Service Centre
    Department of Health
    13 August 2010


    We would therefore appreciate some further clarification on this important
    point and the date when the UK Blood Services will be bringing this
    extension into effect.

    Could I also point out in relation to the opening sentence in the final
    paragraph of the above letter from Mary Heaton, that whilst it is true that
    the role for persisting infection in ME/CFS remains uncertain there is very
    sound evidence, as is referred to in your own (2002) report into ME/CFS, to
    show that a variety of infections, predominantly viral, can precipitate
    this illness.

    There is also evidence of reactivation of latent viral infection (eg EBV
    and HHV-6) in some of these patients.

    Finally, you may not be aware that a number of other countries have
    followed the UK lead in banning blood donations from people with ME/CFS.
    These countries include Australia, Canada and New Zealand. However, I find
    it surprising that no such precautionary action has been announced, at
    present, by those responsible for blood safety in America.

    Yours sincerely
    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
    Member: CMO Working Group on ME/CFS (2002)
    Member: MRC Expert Group on ME/CFS Research


    ME Association
    7 Apollo Office Court
    Radclive Road
    Gawcott
    Bucks MK18 4DF

    Website: http://www.meassociation.org.uk
  11. V99

    V99 *****

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    Thanks for posting this Suzy. Nice to see Shepherd ask the question.
  12. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    27 August 2010 - Here is the latest update from Dr Shepherd at the UK's ME Association.

    The UK Department of Health has now taken the decision to BAN blood donations from ALL ME/CFS patients who currently have, or HAVE EVER HAD, ME/CFS, regardless of whether they are now feeling well.

    The relevant update is a letter right at the end of this long exchange and is dated 27th August, so it is hopefully a direct result of not only the MEA's correspondence, but also the positive Alter/Lo FDA/NIH paper in PNAS this week.

    I've copied the relevant (last) letter to the MEA from the DOH here, but please see below for the full exchange.

    This is GREAT news and the first real indication of a serious change in the direction of UK Government policy.
    ..........


    UPDATE - REPLY RECEIVED 27 AUGUST 2010


    Dear Dr Shepherd

    ME/CFS and Blood Donation

    Thank you for your further letter to Professor Dame Sally Davies, Chief Medical Officer (CMO) for the Department of Health, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and blood donation. I am responding on her behalf.

    As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.

    The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).



    Yours sincerely


    Clara Swinson
    Director of Health Protection
    Department of Health

    Wellington House, 133-155 Waterloo Road, London SE1 8UG



    =======================

    MAY BE REPOSTED


    EXCHANGE OF CORRESPONDENCE BETWEEN THE ME ASSOCIATION AND THE CHIEF MEDICAL OFFICER: PROFESSOR DAME SALLY DAVIES


    Resulting in the introducion of a new blood donation policy re ME/CFS as from 1 November 2010



    August 16 2010


    Dear Dame Sally Davies

    ME/CFS and blood donation


    I wrote to Sir Liam Donaldson on 27 October 2009 following publication of the paper in Science which contained the results of a research study that had found evidence of XMRV infection in people with ME/CFS.

    In this letter I referred to The MEA website statement on XMRV, which called for the current UK ban on people with ME/CFS donating blood while being symptomatic to be extended to include anyone who had suffered from the illness in the past but now appeared to be in remission or had recovered. We felt this was necessary given the uncertainty over prevalence, transmission and possible pathogenicity of this infection.

    Dr David Harper (Director General of Health Improvement and Protection) replied on 9 November 2009 by stating that this correspondence had been brought to the attention of the Director of the UK Blood Services Joint Professional Advisory Committee and that the situation was to be reviewed by the Standing Advisory Committee on Transfusion Transmitted Infections (SACTTI), who would be producing a risk assessment for the UK Blood Services and the Health Protection Agency. Dr Harper also stated that The MEA concerns had been brought to the attention of the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the National Expert Panel on New and Emerging Infections (NEPNEI).

    Relevant part of the 2009 MEA website statement >>


    BLOOD DONATION AND XMRV
    In relation to blood donation in the UK, current advice is that people with ME/CFS who have symptoms, or are receiving treatment, should not donate blood. It would seem sensible in the short term, until we know more about transmission and pathogenicity of XMRV, to consider extending this restriction to people who have recovered from ME/CFS. It seems strange that many overseas countries have not followed the UK lead on blood donation and ME/CFS.

    The MEA has written to Sir Liam Donaldson, Chief Medical Officer at the Department of Health, regarding the possibility of XMRV being transmitted via human blood products and the implications that this has for blood donation.

    The CFIDS Association of America has been issued with guidance from the National Cancer Institute regarding blood donation in the US. The guidance can be read on the CFIDS website.


    We now understand, through a letter that is circulating on the internet, that a decision to extend the ban has been made.

    Letter in circulation >>

    Dear Ms xxxx,

    Thank you for your email of 19 July to Andrew Lansley about the xenotropic murine leukemia virus-related virus (XMRV) and chronic fatigue syndrome/ myalgic encephalomyelitis (CFS / ME). I have been asked to reply on his behalf.

    The issue of XMRV was not specifically raised during the meeting on 20 July with campaigners from Tainted Blood. The National Expert Panel on New and Emerging Infections (NEPNEI) undertook a thorough assessment of the scientific data in June 2010 and concluded that although XMRV can infect humans, there is currently no evidence that it causes disease in humans. NEPNEI's view is that development of a robust diagnostic tool to detect infection accurately is a priority for further investigation of this infection. Further work is required to investigate which human tissues are susceptible to infection, the epidemiology of infection and whether this infection is of any public health significance.

    Both NEPNEI and the Advisory Committee on the Safety of Blood, Tissues and Organs have considered the current evidence and have recommended that no public health action is required at this time. However, the situation will be monitored closely.

    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.

    I hope this reply is helpful.

    Yours sincerely,

    Mary Heaton
    Customer Service Centre
    Department of Health
    13 August 2010


    We would therefore appreciate some further clarification on this important point and the date when the UK Blood Services will be bringing this extension into effect.

    Could I also point out in relation to the opening sentence in the final paragraph of the above letter from Mary Heaton, that whilst it is true that the role for persisting infection in ME/CFS remains uncertain there is very sound evidence, as is referred to in Sir Liam Donaldson's report into ME/CFS, to show that a variety of infections, predominantly viral, can precipitate this illness. There is also evidence of reactivation of latent viral infection (eg EBV and HHV-6) in some of these patients.

    Finally, you may not be aware that a number of other countries have followed the UK lead in banning blood donations from people with ME/CFS. These countries include Australia, Canada and New Zealand.

    However, I find it surprising that no such precautionary action has been announced, at present, by those responsible for blood safety in America.


    Yours sincerely


    Dr Charles Shepherd

    Hon Medical Adviser, ME Association
    Member: CMO Working Group on ME/CFS (2002)
    Member: MRC Expert Group on ME/CFS Research

    ME Association
    7 Apollo Office Court
    Radclive Road
    Gawcott
    Bucks MK18 4DF

    Website: http://www.meassociation.org.uk

    ............................................................

    REPLY RECEIVED 27 AUGUST 2010


    Dear Dr Shepherd


    ME/CFS and Blood Donation


    Thank you for your further letter to Professor Dame Sally Davies, Chief Medical Officer (CMO) for the Department of Health, about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and blood donation. I am responding on her behalf.

    As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.

    The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

    Yours sincerely


    Clara Swinson
    Director of Health Protection
    Department of Health

    Wellington House, 133-155 Waterloo Road, London SE1 8UG


    ENDS
  13. helsbells

    helsbells Senior Member

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    Thanks so much for posting this important info
  14. Francelle

    Francelle Senior Member

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    I think this is excellent news! Could be the beginning of the end for the psych lobby - we all wish!
  15. George

    George waitin' fer rabbits

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    I'm sorry did I fall into a parallel universe?(big grins)
  16. Min

    Min Senior Member

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    Wow, how strange that a false illness belief can be passed in the blood!
  17. taniaaust1

    taniaaust1 Senior Member

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    what a ridiculous statement which was made there!! as if UK was leading the way on things related to CFS/ME hahaha at the stupidity of it.

    By seeming strange that many overseas countries havent followed the UK lead on blood donation, who on earth were they talking about??? third world countries??
    Canada, New Zealand and Australia.. all banned CFS/ME blood donations back last year!!! The only main country still taking CFS blood donations was America... i guess England was refering to America (while America seems to try to follow England when its comes to CFS/ME.

    Yes UK Dept of Health England.. Yes you think you lead the way.. LOL what a joke!!
  18. helsbells

    helsbells Senior Member

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    I know Min, I know, the power I manifest over my own blood cells must make me an NLP genius! :D
  19. Sasha

    Sasha Fine, thank you

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    Good news we're banned, finally.

    A pity that they didn't spell out the logic: which must be that they afraid that it is catching. Our govt making that explicit would really turn the tide, whether they are convinced that XMRV/MLVs are the infective agent or something else.

    A step in the right direction, though!
  20. Sunshine

    Sunshine Senior Member

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    Any predictions on when UK patients take out a joint legal action case against Wessely?

    Would like to see him in court asked to defend his statements on no viral link whilst simutanteously making sure no funding for virology studies is allowed at the MRC (Medical Research Council).. Now THAT's a problem!

    Collusion doesn't go down well in legal cases.

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