Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Finally!! A Positive response from the Dept. Of Health

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by bullybeef, May 5, 2010.

  1. bullybeef

    bullybeef Senior Member

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    I posted the following elsewhere, and it maybe interesting reading here too:

    I received a short but positive response from the DOH this morning. I wrote to them quoting the WPI's letter to McClure, the recent blood bans in other countries imposed upon pwme, and this was their short response:

    So, finally, no dismissal, no contrary quotes, or negative studies. So what has changed behind the scenes? I have since emailed the panel to get their info.
     
  2. V99

    V99

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    Well done Bullybeef, good result.

    Frankly, I think it will be some time before we know the implications for the blood supply. That being the case, they need to stop messing about and bad blood donations. What's the point in putting people at risk.
     
  3. V99

    V99

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    Yes, the big question, what has changed?
     
  4. Jenny

    Jenny Senior Member

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    I don't think anything has necessarily changed - this is just a holding letter.

    Jenny
     
  5. V99

    V99

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    True, but soon they will be reassessing the issue. That's one step in the right direction.
     
  6. bullybeef

    bullybeef Senior Member

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    You are probably correct, Jenny. I have had many responses from the DOH regarding XMRV. I received the following email in February:

    Every reply I have received don't seem to be a template email, but the most recent one definitely isn't as dismissive as earlier emails I received.
     
  7. V99

    V99

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    The last one look like a classic politicians answer. This new one makes it look like they are relieved, even happy, to say something is going to happen.
     
  8. Cort

    Cort Phoenix Rising Founder

    I think this is good - its a different panel than we've heard of before.
     
  9. paddygirl

    paddygirl Senior Member

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    I just saw a letter form ESME on the WPI Facebook page. It congratulates Australia Canada and the UK for their blood bans. I'm confused, is this the old 'discourage unwell people' UK ban or a response to the XMRV threat?
     
  10. bullybeef

    bullybeef Senior Member

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    I have already emailed this new division within the DOH. Just thought I would test the water. In the email I wrote that preceded the positive response, I outlined everything that has been murky about recent studies, how the government currently defers ME patient from donating blood until the are 'fully recovered', and the communication between the WPI and McClure, showing a clear difference of opinion between what the WPI found in the Kuppeveld and Kerr's blood samples.

    I wanted to makes absolutely sure that the DOH didn't have any room to dismiss or counter claim. All we really wish to know is that they are taking XMRV seriously. And a statement of admission on XMRV will hopefully cause the floodgates to open.
     
  11. fred

    fred The game is afoot

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    It is the "old 'discourage unwell people' ban". I think ESME may be confusing Britain with New Zealand or may have misinterpreted the UK NHS Blood and Transfusion's latest statement about XMRV (posted in the thread below).

    http://www.forums.aboutmecfs.org/sh...ban-blood-donations-from-people-with-ME/page6
     

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