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Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by Shell
Any forum for ME FMS Dysautonomia POTs - will show you stories by the truck load of patients given shoddy, rude and useless treatment by doctors. But it's not just us. My friend who finally got her all-clear from breast cancer also received some atrocious treatment from oncologists along the...
I went off for my appointment at the hospital this morning. I am more than aware of how all this works so I had no hopes raised and accepted I would be given the brush off in some way.
There are words I never expected to have come from my mouth or keyboard, but here they are; The Professor was...
I was oh so very honoured to be wheeled into the office of the lord-high-neuro-epilepsy-god himself yesterday. I am sure I was supposed to be suitably impressed. I wasn't.
He started by telling me I don't have epilepsy.
"I know that," I said "My seizures aren't like that and I don;t lose...
I made an appointment to see my GP and go through some stuff with him. In the meantime a genuine Godly person had emailed offering me the money to see a Cardiologist privately. There are some people in this world who are the real deal.
I've had the shiveries for a few days on the trot now and...