1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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NYT letter to editor re: David Tuller article

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by SpecialK82, Mar 14, 2011.

  1. Sean

    Sean Senior Member

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    Good point.

    But they also have to deliver on the employment front. They have to justify the economics of this approach to disability. If they are not translating those (minor) subjective 'improvements' into substantial numbers of patients substantially increasing (and sustaining) their genuine paid work hours (ie being less dependent on welfare), then they and their model will not hold favour with the medical, political and economic establishment forever.
  2. Ember

    Ember Senior Member

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    In the "Protocol for the PACE trial," I found the answer to my earlier question about the "two other definitions of the illness" that were used. On visit 2, participants were assessed according to (among other things) the CDC criteria for CFS (2003) and the London criteria for ME (1994).

    These references are cited:

    Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER: The International Chronic Fatigue Syndrome Study Group Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution.
    BMC Health Services Research 2003., 3(25).

    The London criteria, quoted in The National Task Force. Report on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS) and Myalgic Encephalomyelitis (ME) Bristol, Westcare; 1994.
  3. Angela Kennedy

    Angela Kennedy *****

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    Essex, UK
    But- as I explained in previous posts, it's really not as simple as that.
  4. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    Much to my surprise, I received a personal thank you email from David Tuller after I emailed to thank him for the article. My email (as recommended here) was short and sweet and I thanked him for the article, the reply to White, and for his intelligence and integrity.

    Pretty classy to email back to me I thought.

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