Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Vermont and New England people especially--read this

Discussion in 'Advocacy Projects' started by debored13, May 16, 2018.

  1. debored13

    debored13 Senior Member

    Messages:
    1,215
    Likes:
    993
    Vermont, school in Western MA
    I recently contacted my senator Bernie Sanders, regarding funding CFS research more in general, and Ron Davis' work in particular. Vermont is a small enough state that I think the senator really may respond to this if enough people contact him. I can post what I contacted him in particular. Hopefully we can get a dialogue going. After his presidential run, Bernie has a decently high profile, so maybe he could not just fight for this in the senate, but get more media attention for this illness.

    Hi, Senator Sanders.
    I am a constituent of yours and a long time supporter, who worked on your campaigns when younger. I was in undergraduate, almost all the way through, when I got Lyme working for a tree nursery. This triggered a number of gradual onset, severe health problems, even though the lyme infection was initially treated. I eventually had to drop out of undergraduate one semester away from graduating, because of my severe fatigue and immune issues. I was diagnosed with Chronic Fatigue Syndrome, which is most likely a severe metabolic issue triggered by any number of things--from a bacterial or viral infection to a severe injury.
    I have had great trouble getting adequate medical care for this condition. Even my specialist who has done research does not know exactly what to do. This is why I am extremely, extremely passionate about funding research for ME/CFS. I am writing to you to ask for help on behalf of all ME/CFS patients with increasing funding for research on the disease AND making sure the funding gets used as it should be. CFS is funded less proportionately per sufferer than almost any other major illness. It is extremely debilitating, often causing people to be completely bedridden and unable to work. While the CDC and NIH have recently realized it is an illness with physical etiology and that psychological treatments do not work, they are still far away from funding this illness adequately. Sufferers are committing suicide in large numbers.
    The NIH has started awarding grants to CFS researchers, which is a start, but the numbers are still too low. They also, for bewildering reasons, passed on awarding a grant to the Open Medicine Foundation, at Stanford, which is doing the finest quality research on CFS. I hope you'll look into the work that Ron Davis and Robert Naviaux are doing at the Open Medicine Foundation, and make up your own mind, and consider fighting for OMF to receive grant funding from the NIH. Not only could this work save millions of CFS sufferers, the implications of it could be applicable to many, many diseases, because of the work on developing sophisticated diagnostic technologies, and advancing the study of metabolism in general.
     
    Jackb23, Diwi9, Hubris and 4 others like this.
  2. debored13

    debored13 Senior Member

    Messages:
    1,215
    Likes:
    993
    Vermont, school in Western MA
  3. debored13

    debored13 Senior Member

    Messages:
    1,215
    Likes:
    993
    Vermont, school in Western MA
    maybe calling would be more effective?
     
  4. maybe some day

    maybe some day Senior Member

    Messages:
    497
    Likes:
    1,936
    San Francisco bay area
    Not likely. Leaving a paper trail is far better.
     

See more popular forum discussions.

Share This Page