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9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
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Patients to DHHS: Cancel the IOM Contract!

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 19, 2013.

  1. alex3619

    alex3619 Senior Member

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    [Satire] Yes, its right next door to Clown School.
  2. Ember

    Ember Senior Member

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    Professors Simon Wessely and Christopher Dandeker have suggested following the streetlight effect:

    We conclude that it is difficult to see how further direct research on Gulf veterans will provide much more in the way of relevant information concerning what happened in 1991. Likewise, after 20 years we don’t expect to learn much more about the direct causes of ill health. Much relevant information wasn’t collected, and is not going to be found now. However, researching other populations may shed some light, and animal studies will continue to provide controlled data in a way that human studies cannot.

    But does that mean that we should abandon research into Gulf veterans? Not at all. There is still a need to try and understand the causes of disability and disadvantage in Gulf veterans. We have suggested looking at Gulf War illness in a similar fashion to the way we think about illnesses such as CFS, irritable bowel syndrome and other unexplained syndromes, and to think more about why veterans are either staying ill or not getting better, putting to one side the vexed question of what started the problem in the first place (emphasis added).​
    Nielk and Sparrowhawk like this.
  3. Tally

    Tally Senior Member

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    I was doing fine as well and today after I clicked send I realized I have completely forgotten to sign it. Damn you brain fog
    beaker, Nielk and readyforlife like this.
  4. Sparrowhawk

    Sparrowhawk Senior Member

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    I send a copy to myself, and then copy that the next day, resend, repeat.
    beaker and Nielk like this.
  5. Firestormm

    Firestormm Senior Member

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    22 September 2013
    Note: Please be advised we have added clearer details on how to contact your Congressional representative to the above article with a link to the blog from Liz Willow.

    Fire :cool:
    Sasha and Nielk like this.
  6. Nielk

    Nielk

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    Yes - the Institute of Medicine renamed Gulf War Illness, Chronic Multisystem Illness (CMI). Can you imagine what they would do to us?
  7. Nielk

    Nielk

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    This is exactly the problem. It makes you think why are they so evasive, deceitful and underhanded? Why, when they have chartered an advisory committee such as CFSAC, are they not consulting with them as to how they are working for our benefit?

    Not only do they leave us patients, advocates, experts, clinicians in the dark but they go behind the backs of their own CFSAC members which they have chosen as advisers???

    The window for action is getting shorter and shorter each day. I am really begging for each and everyone to get involved in this action. I would also urge you to get family and friends involved. If they have been asking you what they can do to help you, this would be a great start.

    They are due to sign this agreement with IOM on September 30th. - only 9 days away!
    Valentijn, Snow Leopard and medfeb like this.
  8. Nielk

    Nielk

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    Thank you to everyone for taking part in this e-mail action.
    We have added a new link to simplify contacting you US representatives:




  9. medfeb

    medfeb Senior Member

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    Thanks for the link to the study Ember,
    Ember likes this.
  10. medfeb

    medfeb Senior Member

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    Please do contact your congressional leaders and HHS. Especially the congressional leaders since HHS has demonstrated that it is not listening to anyone.
  11. Chris

    Chris Senior Member

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    Hi--as a Canadian I know that this will affect me and those in the same boat up here too, and have sent my own letter to the list to be copied to. I have a couple of questions--one about the need to keep sending daily--is it clear that these letters will never be read ,and that the only thing that counts is sheer gross number received?

    And I wonder a bit too about the choice of the OIM; here in Canada, Health Canada sets the safety standard for RF and EMF emissions (much, much too high of course) and after 10 years has to review them. They gave the job to an institute called the Royal Society of Canada, of which I had never heard, with the claim that they had a "strong conflict of interest" policy. When investigated, it turned out that several of the committee members chosen by the RSC had actually appeared on the Health Canada website reassuring viewers that there was no danger, and no or virtually no research showing that there was. That of course is not true--and when quite a few of us kicked up a fuss, the man chosen to chair the committee (who was the most obviously conflicted) stepped down. But further investigation revealed that Health Canada in fact was intent on controlling the purportedly "independent" committee in every way, including providing the choice of research material to be looked at, holding the right to "approve" (and therefore disapprove) members chosen, etc.etc.
    In other words, the RSC was just a public front for Health Canada reviewing its own standards, and it seems pretty clear that behind that is a desire to keep the cell phone and "smart" meter companies happy.

    I just wonder if something like that is going on here...?
    Chris
    Bob likes this.
  12. Nielk

    Nielk

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    Hi Chris,

    You are right to think that this action by HHS will probably affect all ME patients around the world.

    I am just a patient and not an expert in politics. I have read about the history of the "politics" of this illness in the US and it seems that this is just an extension of more of the same. It seems to me that this action is aimed at keeping the formulation of this illness in the "control" of DHHS. They have made it clear from day one what their agenda is and they are forging ahead with speed.
  13. Nielk

    Nielk

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    Good idea Sparrowhawk -
  14. Nielk

    Nielk

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    Yes, very interesting that they mysteriously have the money to fund this, yet they don't have the funds for a regular "live' CFSAC meeting this November! They will have a truncated webinar.:confused:
    Roy S and beaker like this.
  15. Nielk

    Nielk

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    Yes. Give it a crappy name....sounds familiar? Washing doewn the definition?...sounds familiar.

    "those doing these things seem to be experts....the patient group still has to catch up."

    You have to realize that this is not a fair game. They are the ones who have the power. They have the money. They set the rules. What do we have? A group of very ill patients.:ill::ill::ill:
    beaker likes this.
  16. Ember

    Ember Senior Member

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    All these maneuvers were set in play two years ago in Ottawa when an international panel of experts had the dedication, the vision and the audacity to publish an ME definition free of any form of sponsorship. Their work is being deliberately ignored. With IACFS/ME and patient support, CFSAC chose an alternate route:
    Cort recently posted, “Honestly, if Lenny Jason gives his OK to anything I would just go with that.”
  17. Ember

    Ember Senior Member

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    Make that Chronic Multisymptom Illness (CMI), Nielk. Even worse.:(
    Nielk likes this.
  18. Tally

    Tally Senior Member

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    That's a good idea. I was just intent on changing the subject of the e-mail and it seems that drained all the concentration I had :p
  19. Valentijn

    Valentijn Activity Level: 3

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    I'm pretty sure both of those doors lead to the same place :D
    alex3619 and Bob like this.
  20. alex3619

    alex3619 Senior Member

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    If they go ahead, if they ignore the patient community and continue to bypass CFSAC, if this results in a definition which ignores the science, then we have every right to boycott this, to demand an investigation for deliberately producing a bogus outcome, and to insist that nobody uses this definition. Its a lose all round.
    Valentijn likes this.

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