• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Here's an interesting resource for getting your story out...


Senior Member
small town midwest
Hi Everybody,

I was exploring online and came across an interesting resource on improving healthcare. There's a group called the Society to Improve Diagnosis in Medicine. Seems like this is right up our alley, with our troubles with getting misdiagnosed with depression, or functional neurologic diseases of whatever, from people that don't understand how to diagnose ME/CFS.

Anyway, they have a patient stories section on their website where patients can send in their stories of misdiagnosis. If you'd like to contribute, the link is here: https://www.improvediagnosis.org/tell-us-your-story/
I think this would be a good way for us to educate healthcare people, if anyone has the inclination.

There's also grant money available if you can figure a way to reduce diagnostic error.

Check it out!