Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Disease of the Month: Myalgic encephalomyelitis

Discussion in 'General ME/CFS News' started by Kyla, Oct 16, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://m.covermagazine.co.uk/cover/feature/2430206/disease-of-the-month-myalgic-encephalomyelitis-me?utm_medium=email&utm_term&utm_content=Disease of the Month: Myalgic encephalomyelitis (ME)&utm_campaign=CV.Weekly_RL.EU.A.U&utm_source=CV.DCM.Editors_Updates

    Well this is definitely a mixed bag.
    It was doing pretty well until it got to the treatment section.
    No mention of rituximab, ampligen, antivirals, etc. But I think you can all guess what is suggested.

    Also ironic that they have suggested pacing and rest earlier in the article...but then go on to suggest the opposite (CBT and GET). So I get the impression this article is just ill-informed as opposed to malicious or motivated by a BPS agenda.

    Excerpt:
     
    Last edited: Oct 16, 2015
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  2. Sean

    Sean Senior Member

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    File link is borked.
     
  3. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Hmmm...it works when I click on it.
     
  4. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Oh...actually I thought you meant the hyperlink. I didn't attach any files, so that is probably why it doesn't work. Not sure why that is showing up. :)
    Random ghost file has been deleted.
     
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  5. Sean

    Sean Senior Member

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    Yes, sorry. File link at bottom, not main link at top. :thumbsup:
     
  6. Sean

    Sean Senior Member

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    The article is okay. Certainly could have been a lot worse. It is an audience that is critical to get onside.

    Apart using the word "felt", that is a welcome statement. My very limited anecdotal knowledge on this says that the best long term outcomes are for those who had the opportunity to do this.
     
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  7. Forbin

    Forbin Senior Member

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    This was Dr. Melvin Ramsay's view at least as far back as 1986.
    Probably like a lot of other people back then, I got the exact opposite advice from doctors who thought that I must be suffering from deconditioning (apparently a mysterious form of deconditioning that disables fit people overnight). They recommended vigorous exercise - which I did - and I got worse. I can't prove that it was the exercise that made me worse, but it sure didn't make me better.
     
    Last edited: Oct 17, 2015
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  8. duncan

    duncan Senior Member

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    "...ME, CFS...is a condition that causes extreme physical and mental tiredness that seriously interferes with a person's daily life."

    "During the 1990's, the term Chronic Fatigue Syndrome came into vogue."

    Extreme tiredness? Isn't there something annoyingly oxymoronic in that? "Seriously" ?

    CFS came into vogue? Like a chic blouse? Courtesy of our marvelous friends at the CDC Fashion Boutique?

    " a condition that causes...physical and mental tiredness that seriously interferes with a person's daily life..." My cousin Bobbie-Sue had a "condition". We don't like to talk about it, but (voice drops to an almost inaudible whisper) she had to go out of state to get it "taken care of".

    And the "best prognosis" thing? If there is a prognosis scale, I don't think there should be a variable for "best". To keep it simple and honest, there should be five or ten degrees of Screwed.

    Fifty Shades Of Grey, meet Ten Degrees Of Screwed.
     
    Last edited: Oct 17, 2015
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  9. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    You made me laugh.....also like Ten Degrees of SUCK IT:aghhh::bang-head::grumpy:
     
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