Australia: National Committee will Issue Report on ME and CFS

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The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical Research Council to advise the government on research and clinical guidelines, has one more meeting before releasing their report for public consultation.
The ME and CFS Advisory Committee will be finalising the report at the next meeting. The same group of people are advising the government on who should be consulted. People with ME in Australia have pushed for a more transparent process and consultation with experts.
If you would like to be notified when their report is available to the public and open for feedback, email the NHMRC at [email protected]
The minutes from August and September meetings have not been published yet. Previous meetings’ minutes are on the NHMRC website.
The NHMRC have added a section ‘Information for Clinicians‘ which does not include the International Consensus Primer on Myalgic Encephalomyelitis for Medical Practitioners, the booklet endorsed and provided by Australian patient organisations to their members and to GPs. The ICC authors are the world’s leading experts, including Australia’s Prof Marshall-Gradisnik, Prof Staines and Dr Don Lewis.
The NHRMC links to a number of resources for clinicians which recommend exercise, cognitive behavioural therapy and antidepressants.

text from RACGP website recommending antidepressants, CBT and graded exercise
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3 thoughts on “Australia: National Committee will Issue Report on ME and CFS”

  1. Elizabeth Edwards

    This could hardly be worse for people with ME/CFS. I feel helpless and hopeless knowing what to do to counteract these persistent, ongoing, crazy, dangerous narratives. I am just horrified. It’s like a Kafkaesque/gaslighting nightmare. How has it come to this? I seem to have missed Australian ME/CFS news while focused on events in the US and UK. Why do we patients have no say in this? Why are psychiatrists still being allowed to dominate with their unproven, discredited theories?
    Also just so angry knowing the harm that will be done to many more newly diagnosed people who will naturally believe their doctors and by following their advice, quite possibly ruin their health permanently. Just horrific this can be allowed to happen in a civilised, first world country. Next thing they’ll being dragging off young girls to mental institutions and killing them with their ridiculous exercise regimens.
    As a senior with ME, of over 50 years, I will just continue to avoid contact with the medical profession as far as I’m able. I’ve already been through being alone and very sick for several years with no medical help because they didn’t believe I was too sick to get into the surgery or organise a wheelchair and had noone to push it etc for me. Barely able to feed or toilet myself during that period, still unable to keep myself clean or go out, so getting old and infirm with ME will be just more of the same.
    I’m strong and prepared for it; if it comes to it, I will just die alone with no medical care when the time comes. But what about the young ones? It’s just so unfair.

    1. Adriane Tillman

      You are no alone in this despair, Elizabeth. As a “young one,” (got ME five years ago at the age of 30), we are raging against this together. Reporting on it here but action is coming…

    2. Dear Elizabeth,
      Thank you so much for commenting, unfortunately I share your experiences. I’m angry too, that’s what spurs me to write and act.
      If we all contact the NHMRC, ask them to send us the report when it’s released and make a submission, hopefully we can make a difference.
      I write at MEAustralia.net too, so you can get the latest news there.
      Yes, it’s already happening in Australia: severe patients forcibly institutionalised and their physical symptoms dismissed and young women, like Alison Hunter, dying from mistreatment.
      Sasha

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