1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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ANZMES: "..worse scores than those with other neurological conditions..."

Discussion in 'General ME/CFS News' started by Firestormm, May 9, 2014.

  1. Firestormm

    Firestormm Guest

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    Cornwall England
     
  2. Firestormm

    Firestormm Guest

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    More from ANZMES this morning, but you'll have trouble reading it I suspect: http://digital.thestar.co.nz/olive/ode/str_daily/ Pages 28-29.

    Will try and get it reproduced somewhere, but it's good to see them hitting the news in this month of all months :)
     
    peggy-sue, aimossy, Cheshire and 3 others like this.
  3. taniaaust1

    taniaaust1

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    Thanks Firestormm for that find. I think I'll send this to the one who's assessing my situation at the Equal Opportunity Commission so he can hopefully understand what Im experiencing a bit better. I cant even advocate properly to my own professional advocate who I know isnt understanding this illness.

    This article and the fact that its ME International Awareness Day on May 12 could be used to try to get reporters to do articles on ME/CFS. I suggest for people try to draw to attention of as many reporters as possible to this article (your newspapers and current affair shows). Maybe some of them would do something on ME International awareness day and this.
     
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  4. aimossy

    aimossy Senior Member

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    Yay NZ!!!!
     
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  5. biophile

    biophile Places I'd rather be.

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    Ironic and sad that one of the most dismissed illnesses in modern times is also the most chronically debilitating.
     
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  6. aimossy

    aimossy Senior Member

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    if you double click on the articles they pop up in different format and are bigger..
    I just accidently discovered this.
     
    rosie26 likes this.
  7. aimossy

    aimossy Senior Member

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    and some more from NZ...
    This is a recent interview with Prof Warren Tate from Otago University and one of the students that is working on their research. A science programme on Radio NZ. Its an easy listen.
    http://www.radionz.co.nz/audio/player/2540615
     
    rosie26 likes this.
  8. alex3619

    alex3619 Senior Member

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    ... and the most ignored, underfunded and misunderstood. Its very darkly ironic.
     
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  9. Nielk

    Nielk

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    How do we turn this around? It seems to that the Moore we insist how debilittating this disease is, the less we are believed.
     
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  10. alex3619

    alex3619 Senior Member

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    The people who need to be convinced are the experts, the authorities, the policy-makers. They have prestige, power, a reputation. They stuffed up, badly. Its human nature to be blind to your own failings.

    We have had a test for ME, or at least primary disabling pathophysiology in ME, for at least 65 years. It was only 7 years ago that we started to realize this.

    This disease violates common conceptions people have about disease. That includes even doctors. ME is different.

    There is going to be huge resistance to change. At first it will be like trying to divert an iceberg by blowing on it. Then it will be like, finally, we have a tugboat pulling the iceberg on a new course via cable. Then the iceberg will melt. Then people will ask why we didn't see the obvious. Then history will be rewritten, as it often is. Though this time it might be different, as historians will have the internet.

    We need to support our researchers. That's the first thing. I do not include psychogenic medicine in this, but do not exclude other psychiatric and psychological researchers. By support I mean by participation, by promoting, by funding and by advocating for research priority, including funding. However I also mean politically.

    In an ideal world a million patients should have signed the letter from our experts supporting the CCC as an interim diagnostic criteria.

    We need to challenge false and dangerous abuse of authority, whether by bureaucrats or doctors, in these matters.

    We need to promote the latest and best science in the media, on social platforms, and to government.

    We need to be better organized.

    There are huge differences in some of our goals, but some basic things I think are universally agreed on, and those should be our priorities: more and better research; a moratorium on government funding on psychogenic medical studies; better medical support for patients, and training for doctors; better social support for the most financially and physically challenged patients, and an end to medical abuse of the very sick.

    Above all, I think we need to shock the world to change, by

    1. deliberately, systematically and carefully making everyone aware of how much they "authorities" and "experts" have stuffed up.
    2. disseminating the consequences of this systematic failure ... this largely means to the public, and includes videos and documentaries, but also books and as we saw lately, even song.
    3. calling the medical profession to account. Its not a doctor, or a few doctors who have stuffed up, its nearly all of them.

    To change something it first has to be seen that something needs to be changed.
     
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