Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Write-up of the Invest in ME conference via The Canary

Discussion in 'General ME/CFS News' started by Bob, Jun 9, 2016.

  1. Bob

    Bob

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    Last edited: Jun 9, 2016
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  2. Bob

    Bob

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    Conrad Bower:

    "Freelance Writer living in Manchester with a background in pharmacological research, covering both academic and industrial positions. I have a keen interest in life the universe and everything, and would like to share everything I learn on the subject with you."

    http://www.thecanary.co/author/conrad/

    Twitter:
    https://www.twitter.com/conradbower1



     
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  3. A.B.

    A.B. Senior Member

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    Good article. Shame about the clown in the comments.

    Well at least he succeeded in making me laugh.
     
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  4. Bob

    Bob

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  5. Bob

    Bob

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  6. worldbackwards

    worldbackwards A unique snowflake

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    I do worry that the radical left don't end up on the winning side too often...:)
     
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  7. Sasha

    Sasha Fine, thank you

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    I don't think this is accurate, is it?

    I thought the study was fully funded and was going to have 20 PWME? (Or 25?)
     
  8. Sasha

    Sasha Fine, thank you

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    I see Janet Dafoe corrected it:

    I didn't realise that this was just pilot data! Pretty amazing for pilot data.

    Thanks, @Rose49.
     
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  9. BurnA

    BurnA Senior Member

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    Can anybody guess the scientific reason for using 43 controls ?
     
  10. Invisible Woman

    Invisible Woman Senior Member

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    ..er...the answer to life and the universe plus 1? ;)
     
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  11. A.B.

    A.B. Senior Member

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    Get a good idea of what "healthy" means.
     
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  12. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    It was pilot data. See my correction. Can we get them to correct their article? Lots of reaction to this mistake.
     
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  13. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Correct. 20. Samples are already drawn. Testing and analysis in progress!
     
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  14. ryan31337

    ryan31337 Senior Member

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    I was seriously fading by the end of the day but weren't the controls just the staff from Metabolon? Or did I imagine this bit!
     
  15. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    You are correct.
     
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  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    To see how much variation there might be in a healthy population, and to establish normative values for a healthy population.
     
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  17. BurnA

    BurnA Senior Member

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    Yes - this was the quickest way to get controls so they used the 43 staff of Metabolon
     
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  18. Bob

    Bob

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    Hi Janet, I've sent a message to the editor, with an explanation and a link to your comment on the Canary. I'll let you know when I get a response.
     
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  19. Kina

    Kina Admin Support Staff

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    That is what Ron Davis said -- basically need lots of data from healthy people to show up the abnormalities in patients.
     
  20. Forbin

    Forbin Senior Member

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    I'm becoming more and more suspicious that there is a connection between at least a subset of ME and chronic ulcerative colitis, the microbiome, and autoimmunity.

    My mother was diagnosed with chronic ulcerative colitis in her early 30's. Just prior to that, she went through a period in which she said that she felt like she was "living in a constant 'fog.'"

    Twenty years later, about three years after the post-viral onset of ME, I was also diagnosed with chronic ulcerative colitis - only to have that diagnosis reversed about a month later at a large university hospital. The second doctor said it was non-specific inflammation and "friable" tissue. He implied it was a transitory condition, but did not seem to grasp that I'd already had it for a couple of years.

    Is it possible, I wonder, for a strong viral immune response to somehow wipe out bacteria in the gut and upset the balance of the microbiome?
     
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