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Blood Supply News?

Discussion in 'XMRV Testing, Treatment and Transmission' started by CBS, Jan 11, 2010.

  1. CBS

    CBS Senior Member

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    I'm starting this to try and sort out some of the discussion on the "Fight is on..." thread (I've been mostly lurking for a few days - ought to be on the 'Burnout Bench' - not SW's couch - in the lounge).

    I have not heard anything on the blood supply question except a breif mention in the 11/19/09 minutes of the 'Advisory Committee on Blood Safety and Availability' - HHS.

    Just to put this in perspective, there are 391 pages of minutes for that meeting. XMRV gets a mention at the beginning and then on to other business.

    I was talking with my GP last week. In November he had a healthy skepticism about the XMRV association. At this last visit we talked very briefly about transmission and the blood supply. I suggested that I did not expect to hear a word on the blood supply until the HHS could assure the public that "the blood supply was safe" and that there was "nothing to worry about."

    If the XMRV association holds up:

    1) Develop reliable test
    2) Put reliable test in place and screen all new blood
    3) Test all existing supplies
    4) Announce to public that there is nothing to worry about and that the supply is safe.
    5) Adopt policy that anyone with 'XMRV-related CFS' be excluded from donating blood or tissue

    My GP's response - "Don't be too surprised."

    It's not that the possibility of XMRV isn't accelerating the pace of research (I suspect that it is THE primary government motivation). We're just not going to hear anything on that side of things until we can all be reassured that 'we have nothing to worry about.' I can even imagine that there will be (is?) some tension between releasing results of positive XMRV studies and the HHS being ready to make those 'assurances.'
  2. shrewsbury

    shrewsbury member

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    Thanks for giving the blood supply its own thread Shane.

    Here's this
    and this from the CAA as well CFIDSLink Dec09: Guidance for Persons with CFS for Safe Blood Donation
  3. George

    George Guest

    I concur. I expect this may be the heart of the embargo's on Dr. Mikovits first two talks. She may be limited in what she can talk about on the 22nd as well. HHS is most likely trying to get all the ducks lined up before they shoot this information to the public. I don't know how well that will work.

    Anyone reading the medical papers will see that this is a blood born as well as sexualy transmitted virus. Lombardi's slip of the tongue regarding people wanting to be tested and being tested in order to keep from infecting others shows the gap between what the scientist "know" and take for granted and what the public has been "fed".

    Sooner or later both the public and those of us who have XMRV are going to have to deal with realities. No matter how long they wait it just puts off the period of time that we will all have to muddle through somehow. I don't expect it to be pleasant.
  4. flybro

    flybro Senior Member

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    pluto
    How many people are aware of this little gem

    FACT: Any individual who has lived or worked in the UK since 1980 is no longer able to donate their blood in any other country in the world. The whole of the UK population is considered at risk of passing vCJD onwards through donated blood.

    I'm British and had absoloutley no idea about this until, the WPI facaebook discussions. No major media outlet seems to be keeping the British imformed of this.
  5. CBS

    CBS Senior Member

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    My wife is excluded as she did a semester and then some in London. No offense but maybe the problem is the newspapers?
  6. flybro

    flybro Senior Member

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    pluto
    No offence taken Shane,

    My patriotism and national pride has been taken a pasting for over twenty years now.

    Our investigative journalists and main stream media obviously have no balls.

    Shame they would need them to tell the truth.

    Cowards in a country full of bullies, just what we need.
  7. CBS

    CBS Senior Member

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    I've always found it so hard to tel them apart.

    As for the U.S., I know it's no big secret that we have our share.
  8. kim500

    kim500 Guest

    Just saw this posted at:

    http://cfsknowledgecenter.ning.com/forum/topics/a-breakthrough-made-in?xg_source=activity

    "This press release was posted on an ME list this morning.
    Source: Daily Yomiuri Online, Japan
    Researchers have discovered a protein in blood which can be used to diagnose The Chronic Fatigue Syndrome. According to their findings it is possible to be diagnosed earlier than the six month marker.
    The research team was led by Hiroshi Kiyama, professor of anatomy at Osaka City University.
    I don't know where it goes from this study.
    The study was done first on rats, and then on a relatively small group of people.(57 pp)
    It involved an extraordinarily high amounts of protein called alpha-MSH."
  9. CBS

    CBS Senior Member

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    CFS? alpha-MSH and fatigue

    Hi Kim,

    Thanks for the heads up. I don't see anything pubmed yet. I did find a recent study done by Dr. Kiyama. It looks like the article I was able to find looked at stress. I did not see anything yet specifically about CFS or diagnostic criteria. This would be interesting to keep an eye on. Here's the pubmed abstract on the alpha-MSH article from March, 2009:

    I just Googled this and it looks like it has also been posted on ProHealth: http://www.prohealth.com/library/showarticle.cfm?libid=15084.

    From ProHealth:
    Not XMRV but could prove useful. Maybe a good post for its own thread?
  10. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    I think there's already a thread.

    ETA I read it this morning - but can't find it now ??
  11. CBS

    CBS Senior Member

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  12. kim500

    kim500 Guest

  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I am wondering about the blood studies also.

    I thought Holmberg said there would be some statement within a couple of weeks of the CFSAC meeting, even if it was announcing a plan of action. Surely one of you guys knows what's up with that.

    I suspect they don't want to announce until they have testing in place for all the current blood. Because if they don't, then all current blood is bad. It's a case of positive for XMRV until proven otherwise. But this will not solve the problem of having to admit that many people may have been infected in the last 25 years through blood.

    If XMRV is in the blood, and it is shown to cause CFS, or cancer for that matter, or any illness for that matter, then there is no winning for the blood folks. Announce it and they lose, hold off and they lose (along with new people being infected losing).

    I wonder if there are a lot of meetings happening now with men with their heads in their hands, worrying about what to do.

    Tina
  14. Didn't someone official at the CFSAC meeting say it would be at least 6 months?
    I forget who. Looking back I think the problem is they cannot decide if/when to ban
    blood for CFS, until the WPI/VipDX test is finalised and agreed upon to be the 'finished'
    product to detect XMRV. If and only then, would the WPI technology be used to screen
    the blood - to determine how much there is out there in the community.

    I'm guessing off the top of my head it could be June/July 2010 before we hear some
    news.

    If is is proven infectious and blood stores need to be protected, that's another 'game changer' for sure.
    And another CFSAC meeting will take place of epic proportions. Which is always a good thing.
  15. Martlet

    Martlet Senior Member

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    My husband discovered this when we moved over here. He had donated all his life, but it seems the Americans are worried about that roast beef and Yorkshire pudding. :D

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