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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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The Lens - new CFS radio segments

Discussion in 'General ME/CFS News' started by JohnnyD, Apr 15, 2013.

  1. JohnnyD

    JohnnyD Senior Member

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    The Lens
    Chronic Fatigue Syndrome

    http://www.davidmsinger.com/

    4 - 3.5 minute radio segments worth listening to .
    =======================

    Posted on April 14, 2013 by admin
    Today starts The Lens, a blog that will attempt to examine issues that remain out of the public eye and far away from public action. This first post is a series that’s slated to run on KDKA-AM in Pittsburgh the week of April 21st.

    ____________________________________________________________

    It’s about a disease often referred to as Chronic Fatigue Syndrome. The medical community knows it as Myalgic encephalomyelitis (you can hear the pronunciation in the segments below) and jointly known as ME/CFS for short.

    The benign and innocent name was coined in the 1980s by the Centers for Disease Control and Prevention after an inability to pinpoint any certain cause or symptom set for the condition.

    There’s no treatment or cure. Patients are often prisoners of their own minds and bodies, as those with severe cases can hardly move and having a simple conversation can leave a person exhausted.

    The tide may be turning for patients, or at least that is the hope, as a first-ever stakeholders’ meeting organized by the Food and Drug Administration (which recently rejected the only drug in a decades-long clinical trial for ME/CFS sufferers) is being held April 25th and 26th in Bethesda, Maryland. With patients bound to their beds and trapped in their homes, hardly anyone knows of the condition and researchers and drug companies are either reluctant to act, or are following dead leads that presume the condition is mentally related.

    The condition is real, ignored, and for most, terminal.

    The following is formatted for radio. Listen to a segment, then click back. Each is approximately 3 and a half minutes.

    ME:CFS1 Day 1: What is Chronic Fatigue Syndrome?

    ME-CFS2 Day 2: Why is this so controversial?

    ME-CFS3 Day 3: Why is the FDA not acting?

    ME:CFS 4 Day 4: Is there hope for patients?

    For more information, visit:

    http://www.mecfs.org.au/what-is-meorcfs
    http://phoenixrising.me
    http://nopostergirl.com

    Cited in this report: Robert Miller. Jocelyn Waite. Rivka Solomon. Jennifer Spotilla. Greg Mitchell. Dr. Bruce Rabin. Dr. Judy Mikovits.

    Background: Dr. Nancy Klimas, Dr. John Chia. Anonymous (2 patients who wished to remain anonymous could not be recorded, but provided background as to symptoms and their doctors’ belief as to origin or cause: one believed her immune system to be fighting a hidden virus; the other believed her body to be actively fighting or overreacting to a past illness, such as pneumonia or epstein barr virus.); and, Dr. Paul Cheney, Dr. Daniel Peterson.)
     
    Ember, Sean, Little Bluestem and 2 others like this.
  2. SpecialK82

    SpecialK82 Senior Member

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    USA
  3. JohnnyD

    JohnnyD Senior Member

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    It looks like the site is down -- he might have gotten too much traffic for his hosting account. I'd wait awhile and try again. Thanks!
     
  4. Shell

    Shell Senior Member

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    England
    Thanks for posting this. Very good.
     
  5. SpecialK82

    SpecialK82 Senior Member

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    Yep, it's working now - great press coverage for us!
     
  6. LaurelW

    LaurelW Senior Member

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    Utah
    It doesn't seem that the allegations in the first segment that ME is caused by child abuse were refuted. This concerns me. Otherwise great segments!
     
  7. akrasia

    akrasia Senior Member

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    I wouldn't worry about this doctor's embrace of the child abuse theory because he hangs himself when asked about treatment. He waves away any address of the suffering caused by m.e., saying in effect that people already sick should be written off: his concern is with protecting children. On my false calculus/inanity scale that gets about an 8 out of a possible score of 10. I suspect it sounds that way to the producer of the program and will be heard in that spirit by the general audience.

    The answer to the child abuse canard is in the surprisingly extended portion of the 2nd program given to Judy Mikovits, who passionately defends a retrovirus hypothesis, though not of course XMRV, and while at it charges the government with a coverup of an epidemic.

    My question is why did he give so much time to Mikovits when he could have gotten sound bites from any one of his background m.e doctors, who included Cheney, Peterson, Chia, and Klimas. I don't mean this as a criticism, but I would love to know the backstory for this decision. And whatever the fate of the retroviral hypothesis, pointing out that it was and is in the government's interest to sequester this in psychosocial limbo is heady, rad stuff to hear on a mainstream radio station.
     

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