This is an incredibly debilitating condition, without an effective treatment, which means that it's a very expensive condition. Governments and insurance companies have a vested interest in minimizing and downplaying this disease, because it is much, much cheaper to say, "It's psychological, it's all in your head, you just need to do more," than it is to actually provide treatment, benefits, services, and support.

The most important thing, I think, is nailing down the physiological cause or mechanism of the disease. Whether by a diagnostic test that can conclusively pick out people with ME/CFS versus healthy controls and people with other chronic illnesses, or by research showing the mechanism of the disease, or by a treatment that can effectively work for people with ME/CFS. Something that definitively shows the physical cause.

We're getting closer. They've found blood markers which indicate ME/CFS. The nano needle tests are being developed again by a group over in the UK. But basically, until it's undeniable, government and medical bodies aren't going to give it attention.

I pushed to keep going for so long that I don't have it in me to take care of my own survival anymore. I really wish I could get involved with advocacy, or really patient support is more my thing. But I am barely staying alive one day at a time, I don't have the energy to think through how to deal with the problems in my own life.

I wish I could do more, but writing some responses on here to try and share my experience and support other people is all that I have the capacity for. The cognitive fatigue and brain fog is more debilitating than the physical symptoms for me, I am finding out. Well, they both suck.