1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Patients to DHHS: Cancel the IOM Contract!

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

  1. beaker

    beaker CFS/ME 1986

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    Didn't anyone take DeParle's place ? If not, shouldn't we ask for someone to do so ?
    Crud. Advocacy on top of advocacy.
  2. Snow Leopard

    Snow Leopard Senior Member

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  3. beaker

    beaker CFS/ME 1986

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    I shudder to think of how much they are spending on this project. I would much have them just use the CCC or ICC and put the money toward research. Bureaucrats.
    WillowJ and Nielk like this.
  4. Sasha

    Sasha Fine, thank you

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    Just sent today's email - remember it's a daily action, folks!

    New post from Jennie on this:

    http://www.occupycfs.com/2013/09/20/pedal-to-the-metal/
    Nielk likes this.
  5. Bob

    Bob

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    Re the Dept of Veteran Affairs website (see the above link), it states:
    In the last paragraph, if we replace 'Gulf War Syndrome' with 'CFS/ME', then perhaps that indicates what we could expect from a similar consultation for CFS/ME. For example:
    A panel of non-experts will consider the vast amount of psychological research literature, and may well conclude that there is no agreement about the nature of CFS/ME; that there is a wide range of symptoms; and 'functional' (i.e. cognitive-behavioural) issues may play a role in perpetuating the illness for at least a subset of patients.
    Nielk, SOC, beaker and 3 others like this.
  6. readyforlife

    readyforlife Senior Member

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    Just sent my emails out. This illness is just mind blowing, the last few days I sent out these emails with out any problems. Today it took me forever, my brain couldn't focus and my fingers were useless.
  7. energyoverload

    energyoverload Senior Member

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    I've just sent the email out too. Will do everyday! :)
    Nielk, beaker and Sasha like this.
  8. Firestormm

    Firestormm Guest

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    Shame you can't automate the sending really....
    beaker and Sasha like this.
  9. medfeb

    medfeb Senior Member

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    Hmmm indeed. The focus on grouping everything together as medically unexplained illness is too reminiscent of the approach HHS is taking. In a response to the May 2013 advocate request to adopt the CCC, Dr. Unger stated
    "CDC will continue to engage CFSAC, public health partners, and patient advocates in the development of control and prevention strategies to reduce the morbidity associated with CFS and to improve the quality of life of persons with CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis."


    Agree - especially if they focus on a literature review as in the CMI definition initiative.

    Keep writing those letters. And if you are U.S. residents, please consider sending an email to your senators and congressional representative. Simple directions and a sample letter can be found here on Liz WIllow's blog and also here
    Roy S, Nielk, SOC and 1 other person like this.
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    Does the Wessely School conduct formal classes in how to do this sort of thing?
    jimells likes this.
  11. Firestormm

    Firestormm Guest

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    What was the DSM ruling on this sort of thing out of interest i.e. MUS? Might that be the reason behind this 'push'?
  12. Esther12

    Esther12 Senior Member

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    Doesn't look great.
  13. taniaaust1

    taniaaust1 Senior Member

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    "the Dept of Veteran Affairs website (see the above link), it states:



    A prominent condition affecting Gulf War Veterans is a cluster of medically unexplained chronic symptoms that can include fatigue, headaches, joint pain, indigestion, insomnia, dizziness, respiratory disorders, and memory problems.

    VA refers to these illnesses as "chronic multisymptom illness" and "undiagnosed illnesses." We prefer not to use the term “Gulf War Syndrome” when referring to medically unexplained symptoms reported by Gulf War Veterans. Why? Because symptoms vary widely."

    That makes me wonder if they want to get the "Gulf War Syndrome" name out of the picture as it envokes too much public sympathy. So give it a crappy name and help to try to make the illness vanish some by also washing down the definition.

    Wonder if they have lessons on "how to make an illness disappear" cause those doing these things seem to be experts at what they do and unfortunately the patient group still has to catch up with the sly tactics that is played with us by those high up.
    Valentijn, Sasha and Bob like this.
  14. Ember

    Ember Senior Member

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    This CDC definition for Chronic Multisymptom Illness, with significant CFS overlap, was developed in 1998 to classify cases of Gulf War Illness:
    Nielk, Bob and Valentijn like this.
  15. medfeb

    medfeb Senior Member

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    Thanks for that link, Ember. Was this 1998 definition ever published in the literature?
  16. Ember

    Ember Senior Member

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    "Chronic Multisymptom Illness Affecting Air Force Veterans of the Gulf War" by Fukuda et al.:
    Bob likes this.
  17. Denise

    Denise Senior Member

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    :)
    Thank you Ember.
    Ember likes this.
  18. Sparrowhawk

    Sparrowhawk Senior Member

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    This part, "The condition was not associated with specific GW exposures and also affected nondeployed personnel." is troubling and intriguing. Did nondeployed personnel get the same immunizations? What other common factor could there be? I admit that until I read that sentence I had assumed it was all from exposure to depleted uranium dust, and only confined to deployed personnel.
  19. readyforlife

    readyforlife Senior Member

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    Just finished sending my Saturday emails out. Everyone needs to keep sending out emails.
    beaker, medfeb, Nielk and 1 other person like this.
  20. Sasha

    Sasha Fine, thank you

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    Just sent today's email.

    Keep sending them in, folks!
    beaker and Nielk like this.

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