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ME/CFS Awareness Day 2022

In my experience last year, we are all too inundated with things to read, look at and try to do today for it to make sense for me to put a big effort into writing something today.

I’ll just say that we are all suffering so so much and the world does not understand. Today is a day to acknowledge that and push for more awareness. ME/CFS is a real disease, a serious, debilitating chronic illness. We may not die grizzly deaths that are attributed to ME/CFS, but a lot of people with ME/CFS who do not have proper care (which is a huge number of people) wind up dying terrible deaths alone on the street - see my blog post called "The True Horror of ME/CFS":

NIH tried to swipe HIV under the carpet just like ME/CFS when it first started, but people were documented dying terrible deaths and eventually they were forced to take action. This is a pattern in our health care system for new diseases and it hast to stop. We need a more compassionate, more educated, and more preemptive medical care system.

We don’t have images and stories of horrible deaths, because the people dying these deaths have been abandoned by everyone and die alone, unacknowledged, undocumented, unknown.

But awareness is growing, and someday, someone will decide to take this illness as seriously as it is.

All I can offer you today is understanding of your suffering and knowledge that things will improve.

This is a curable illness, we have research and medical proof to show it. Someday someone will either find a cure through heavy research, or stumble upon a cure. And we will all go back to living our lives and remember this as a terrible nightmare.

And society will have to face what it has done to us. There will be a reckoning. This is one of the greatest acts of medical maleficence in history. We will be remembered as warriors who fought unimaginable circumstances, and people will shake their heads at the horrors we faced. Someday. I believe soon, but I make no promises.

Hang in there everyone. Tighten your belts one more notch and let’s keep fighting to survive one day at a time until they find good treatments or a cure. There is light at the end of this tunnel, we just have to look ahead to see it.



Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.

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