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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Jennie Spotila: "Brilliant Scientist Among the #MillionsMissing"


Fine, thank you
Occupy CFS said:
My friend Barb opened a window into the extraordinary loss she has endured because of ME/CFS. Please read her powerful statement, and count her among the #MillionsMissing.

If you want a tiny peek into what I live with every day, read what I have written here. I rarely post such an in-depth look publicly, because of the stigma around chronic illness and disability. It hurts when people judge me for how sick I am. And many do. It hurts when people leave me because of chronic illness. Which some do. It hurts when people blame me for being sick. Which some do. So I avoid talking “too much” about the specifics of how bad it is. For some people, talking about it at all is “too much.”

But today is the day of the ‪#‎MillionsMissing‬ protest against the government’s inaction regarding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and I can’t go to any of the in-person events because I’m housebound disabled by the illness. I can only protest virtually. So this is my virtual protest: an attempt to educate anyone who cares to learn about the effects of this disease that has stolen my life, and the lives of millions of others like me.

Millions of us are missing from the lives we thought we were going to lead....

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