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Dr. Mark Guthridge talks about ME/CFS on ABC (Australian Broadcasting Corporation) radio

Discussion in 'General ME/CFS News' started by ahimsa, Jan 7, 2020.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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  2. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I've managed to listen to part of this and it sounds pretty good.

    FYI, no transcript available yet (that I can find) but it may be that one will be provided later.
     
  3. Trish

    Trish Moderator Staff Member

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    I've just listened. It was really really good.

    It's great to have a scientist/patient talking knowledgeably from his own experience about the problems of pwME not getting diagnosed and the very clear way he spelled out the fact that ME is unlike other conditions in that exercise makes the condition worse. He is now an associate professor at Deakin University and setting up a CFS lab to try to find a biomarker, and talked about why that is so important.

    If you're reading this, Mark Guthridge, thank you.
     
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  4. Ravn

    Ravn Senior Member (Voting Rights)

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    Very good indeed.
    Just apart from the "Australian disease" of talking about chronic fatigue.
    They were trying hard though. Quite a few times they went Chronic Fatigue...[oops, almost forgot...]... Syndrome. ;)
    But apart from that, more interviews of this sort, please.
     
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  5. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    @2:12:20 He says crashes last for days. I would have preferred it if he mentioned crashes that last for months, years or even indefinitely as in my case. Specifically the lowering of the PEM threshold. On the positive side he did mention that exercise makes patients worse (in contrast to other diseases).
     
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  6. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    If we had our way, the disease name would be reduced to the shortest and easiest pronounced vowel.
     
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  7. Forbin

    Forbin Senior Member (Voting Rights)

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    At one point he says that ME/CFS is:
    2x as common as epilepsy
    3x as common as Parkinson's disease
    4x as common as MS
    40x as common as motor neuron disease (aka ALS, "Lou Gehrig's Disease")

    ...which are pretty interesting statistics that I've not really heard presented all at once before.
     
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  8. Ravn

    Ravn Senior Member (Voting Rights)

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    From my now dimly remembered linguist days that would have to be the vowel 'a' (pronounced as in mama or dada) - which would put us at the top of any alphabetical list. Maybe that'd work better at getting us the attention of funding decision makers than anything else we've tried so far...
     
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  9. dave30th

    dave30th Senior Member (Voting Rights)

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    Ha, this drove me nuts when I was there. Patients, clinicians, researchers--everyone called it "chronic fatigue." "Syndrome" was almost never used, ME was almost never used, ME/CFS pretty rarely.
     
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  10. Anna H

    Anna H Established Member (Voting Rights)

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    It now says "audio has expired". :(
     
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  11. oldtimer

    oldtimer Senior Member (Voting Rights)

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    Something's wrong. I wrote her a message.......
     
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  12. oldtimer

    oldtimer Senior Member (Voting Rights)

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    This is the reply:

    As the programme is on Summer with fill in presenters and producers who can be in any part of the country, podcasts are not uploaded during this time.

    The only audio available is the full programme which expires after 7days (so each Sunday, the latest programme is uploaded automatically).

    I hope this helps,

    Regards,

    Rhianna (who is still in holidays until mid-Feb)"

    Beats me! My brain is mush atm.
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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