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

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NPR Wants to Hear Your Story (???)

Cort

Phoenix Rising Founder
Check this out. NPR wants to hear stories about run-ins with the medical system. All may apply.

Assertive Patient: Have A Story To Tell? by Deborah Franklin

Calling all patients: We need your help with a few stories we're investigating.

Have you ever gone to your doctor and asked for a medication after seeing an advertisement on television? Did that turn out well? Did that turn out badly?
Do you feel like you need to be aggressive with your doctors because it's difficult to get the attention you need from the medical system?
Have you ever been misdiagnosed by a doctor in a way that has changed your approach to the medical system?
Have you ever become aware of a disorder that you suffer from by watching a public service announcement that educated you about a disease?
Do you spend a lot of time on the internet looking at health information and researching medical issues that you feel are related to you?
We're looking into stories about what it means to be a modern patient and we might like to speak with you (if, that is, you want to speak to us).

If you read the questions above and feel like you have a story to tell, please let us know ASAP.

You can write privately to us here: http://www.npr.org/contact/assertive.html (Please put "Assertive Patient" in the Subject line.)

Many thanks!