August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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An interesting day

Discussion in 'General ME/CFS Discussion' started by Butydoc, Mar 27, 2015.

  1. Butydoc

    Butydoc President

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    When I woke this am, I surfed the internet and decided to listen to Vincent Racaniello most recent installment of TWIV. Vincent Racaniello is a virology professor at Columbia University who has previously spoke about XRMV. During this episode, the group discussed the IOM report. It was interesting how the group perceived the name change and their confusion about the disease. They commented on the group of patients who were dissatisfied with the name change. I think it would be appropriate for those debating this issue to hear what scientist think about this controversy. Dr. Racaniello made a very interesting comment. He confessed to the group that his son has a debilitating illness which is poorly understood which prompted his wife to send him an article about the IOM report. She believes her son has CFS/ME/SEID. Here is the link to this episodeTWiV 329.

    I went to see my internist later today to have some blood work. When I saw him, he was very excited to speak to me about a book he just read. The title was "Plague". I haven't read this book yet. I was impressed how much he had learned about CFS/ME/SEID. Apparently the book was very sympathetic to Judy Mikovits.

    What was interesting to me was that two separate events in my life that were unrelated except for the fact that they were talking about CFS/ME/SEID. Hopefully this is not just a fluke but possibly a greater awareness concerning this disease. I can't wait until I can use a single name for this disease. It sure would make it easier to discuss and write about it with less work and confusion.

    Best,
    Gary
     
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  2. halcyon

    halcyon Senior Member

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    Probably because it was written by Judy Mikovits.
     
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  3. aquariusgirl

    aquariusgirl Senior Member

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    Racanciello has a son who may have CFS?
     
  4. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    @Butydoc, thanks for the heads up about TWiV. I have listened to it a few times in the past.

    I wonder if issues around ME and ME research are not reaching a turning point. Or is this just a cyclical thing? At some point things will turn around, but its hard to be sure at the time if current improvement in interest and knowledge by the public is such a turning point. We can hope so.
     
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  5. Esther12

    Esther12 Senior Member

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  6. Valentijn

    Valentijn Senior Member

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    I think it depends on whether or not ME patients and advocacy groups and researchers can constantly continue pushing things in the right direction ... or if we run out of steam or start running around in circles :rolleyes:
     
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  7. rosamary

    rosamary Senior Member

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    No offence to judy mikovits, but that made me laugh.
     
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  8. Iquitos

    Iquitos Senior Member

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    Actually it was written by Dr. Kent Heckenlively for the most part.
     
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  9. Iquitos

    Iquitos Senior Member

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    Once again, it takes knowing someone with the disease for some people to "get it."

    @alex3619 I'm beginning to think this might be a turning point. Last week I had my first appointment with a new PCP. She said she didn't treat MECFS but she didn't act like she didn't believe it existed. Then SHE suggested I try Valcyte and prescribed it for me! I wasn't even going to ask.

    And with Carol Head/CAA's endorsement of the IoM findings, I take that as a signal that the government is about to do a U-turn back to the right direction, since I believe the CAA is still a government front.
     
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