#May12BlogBomb – Heartbroken

A portrait of a woman. She looks down with her eyes closed.
Artwork by Beth Raven.

May 12 is International ME/CFS and FM Awareness Day, and today bloggers are joining together in a #May12BlogBomb to raise awareness of these illnesses. I should be writing about the what ME/CFS really is, the debilitating symptoms, the research. I should be valiantly trying to raise awareness for this condition that has ruined my life, and many others. But I am heartbroken and cannot.

The politics of ME/CFS are murky and unpleasant. Too many ME/CFS patients will readily tell you of the disdain they receive based on their diagnosis, and the fragmented healthcare which ranges from understanding helplessness to outright abuse. A couple of weeks ago, I wrote about the PACE trial – a study which, despite its numerous biases, ethical and methodological problems, managed to influence ME/CFS treatment and research for years after its publication.

Thanks to the PACE trial, graded exercise therapy and cognitive behavioural therapy became the gold standard for ME/CFS treatment, based on the philosophy that ME/CFS is not an organic illness, but a collection of deluded “illness beliefs” that can be talked and exercised away. Insurers and governmental health agencies alike denied ME/CFS patients disability benefits, actual treatment, and any form of legitimacy based on this one, misconducted study. Never mind the fact that forced exercise is proven to be incredibly harmful to ME/CFS patients, with approximately 3/4 of those who try it becoming markedly worse, often to the point of being completely bed- or house-bound.

I thought, perhaps, that when the PACE trial was finally discredited, and its researchers biases brought to light, we had come to a new stage for ME/CFS patients. One where our suffering was finally recognised as genuine, and medical research and support offered. I was wrong.

Australia is currently transitioning to the National Disability Insurance Scheme (NDIS) – a new model of distributing disability support which was supposed to be based on need, rather than having one of a narrow list of conditions. Unfortunately, it has become, if anything, more exclusive and damaging than the system we had previously.

The National Disability Insurance Agency (NDIA), who are implementing the NDIS, have narrowed criteria for inclusion down to a handful of conditions. Those who have experienced polio are not included, and neither is ME/CFS.

I have heard from several sources that the NDIA are rejecting ME/CFS patients on the basis that ‘ME/CFS is not a “permanent illness” and “exercise and cognitive behavioural therapy are effective treatments”’. Of course, these recommendations come straight from the PACE trial. It seems genuine science matters little to those who have an idealogical agenda to push.

I was relying on the NDIS to make a tangible change in my life. To take the pressure off my parents who manage my full-time care, and to interact a bit more with the world. Applying with my medical team was giving some purpose to this year, which is now lost, along with a great deal of my hope for the future.

Things only stand to worsen for ME/CFS patients as funding is redirected from our support agencies to the NDIS. Once more, we will have to put on our brave faces, rely on what limited resources we possess, and carry on living and fighting in a world which refuses to acknowledge our existence.

 

Thanks to Alyssa of Make Lemonade with Lupus for the idea of writing about healthcare reform during an awareness month.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

19 thoughts on “#May12BlogBomb – Heartbroken”

  1. A saying, “The sooner each person realises that they are entirely alone, the better off you will be,” underlines the whole outlook of the medical profession. Siobhan, people can have their entire futures removed when the medical profession get their hands and beliefs on their”treatable” conditions. Love, auntie E.

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  2. Oh crap. And nobody want to look at the bigger picture, at least not here. Sounds like Australia is just as bad. So sorry you have to carry on struggling – that’s definitely not helping!

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      1. ((Hugs)) <- because I don't know what else I can do. I tend to wish for those doctors and politicians who totally forget it's people and lives affected by all this crap to suddenly be in the same situation. A forceful eye-opener…

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  3. This is so sad. I’ve never understood the idea of making lists of who should be included in any program- obviously over time more people will need to be added and this is just the most inefficient method possible.

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    1. Well, I don’t think they will be added. As it is, only people with a small range of neurological conditions, mental illnesses and intellectual disabilities are eligible for government support. It has been this way for many years and no one has done anything about it. I suspect what the NDIA decides today will be set in stone. They certainly won’t be pouring more money into the program to expand it!

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  4. hi, Siobhan – not trying to talk you into anything, but Dr. mcDougall’s plan has really helped me (inflammatory arthritis and other health problems – I was a mess!) – still not 100%, but doing Much Much Better. I’m doing his program for free – the information on his website is very generous.
    It’s something you can try for a month if you want to…

    https://www.drmcdougall.com/health/education/health-science/stars/stars-written/cheryl-m-lambert/

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    1. Hi Chris, thanks for the suggestion but unfortunately, diet doesn’t have much of an effect on ME. I should know, as I’ve tried every diet under the sun (including veganism!). I wish it did!

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  5. This really is heartbreaking. I’m so sorry the NDIS is leaving so many people behind, including you. Ignoring evidence and reason to support an agenda harmful to people in need is exactly what enrages me about conservatives.

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