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To the #MillionsMissing...by Scott Ludlam (The Guardian - Australia)

Discussion in 'General ME/CFS News' started by MsUnderstood, May 12, 2018.

  1. MsUnderstood

    MsUnderstood Senior Member (Voting Rights)

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    Perhaps this article demonstrates the value of @dave30th 's recent awareness-raising trip in Australia.

    To the #MillionsMissing with ME/CFS, something remarkable is happening

    https://www.theguardian.com/comment...-with-mecfs-something-remarkable-is-happening

    "Even the name worked against you. Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) combines the incomprehensible with the banal. Myalgic what? And fatigue … doesn’t sound so bad, as medical conditions go, right?

    Between 94,000 and 242,000 Australians suffer from the condition . . . There’s a hint right there that something is deeply amiss – we don’t even know to within the nearest hundred thousand people how many are affected. Two things are clear, though: one, it’s a lot of people. And two, they’ve had enough of being treated as though they don’t exist.

    . . . the formation of an expert advisory committee within the NHMRC in late 2017, after a focused lobbying effort. The committee brings a mix of clinical and patient expertise to the task of directing funds towards the most prospective areas of biomedical research and developing nationwide guidance for doctors struggling to provide accurate diagnosis and appropriate treatment. It may, at last, lay to rest the notion that people are imagining their symptoms or that a few push-ups might help."

    The comments also make an interesting read, especially the conversation started by charleyb23 who stated "I think there are far more pressing chronic medical conditions that need funding than this."
     
    Dolphin, MarcNotMark, Sean and 22 others like this.
  2. jeckylberry

    jeckylberry Established Member (Voting Rights)

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    I saw this too, and found it pleasantly satisfying to see such a thing in print. I couldn't help thinking the same; that David Tuller, in coming from a journalist, as opposed to medical background, influences other self respecting reporters to follow suit.
     
    Louie41, Tia, Nellie and 4 others like this.
  3. petrichor

    petrichor Senior Member (Voting Rights)

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    Sometimes it's best not to pay too much attention to comments like that.

    The article is really good though.
     
    Louie41, Tia, Milo and 1 other person like this.
  4. Trish

    Trish Moderator Staff Member

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    I think it's an excellent article. The writer is a former Green Party politician in Australia. He seems to really get it about what has gone wrong with ME/CFS politics, research and treatment and is very supportive of #MillionsMissing.
    Slight concern that he only seems aware of the possibly dubious claims of the Griffith Uni research team as far as biomedical research in Australia is concerned, not the Melbourne team.
    I see this is in the Australian edition of the Guardian. Does anyone know whether it is also available in the UK edition on line?

    Edited to add the bit about research
     
    Last edited: May 12, 2018
    Dolphin, Sean, lafarfelue and 12 others like this.
  5. Hutan

    Hutan Moderator Staff Member

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    The author, Scott Ludlam, was until recently an Australian politician who stuck his neck out for people with ME. As his article states, he's been working for people with ME since at least 2015. A problem with dual citizenship (which isn't allowed for politicians under Australian rules) forced him to resign, which was a blow for us.
     
    Dolphin, Louie41, Milo and 11 others like this.
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    It's not listed anywhere on their front-page.
     
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