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.