• 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 become a member, simply click the Register button at the top right.

Good NPR article on Shots blog

Status
Not open for further replies.

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I wonder if we could recruit Amy Dockser Marcus of the Wall Street Journal who had extensively reported fairly in prior issues on ME/CFS ?

She stopped writing when some people wrote to her and asked her not to use CAA as the main source of patient remarks. Everyone was a bit annoyed with CAA at the time for some remarks they had made in the press (not anything Amy wrote, I don't think) which seemed to trivialize the illness. I'm not sure how to rebuild this bridge with Amy Dockser Marcus.
 

Kati

Patient in training
Messages
5,497
She stopped writing when some people wrote to her and asked her not to use CAA as the main source of patient remarks. Everyone was a bit annoyed with CAA at the time for some remarks they had made in the press (not anything Amy wrote, I don't think) which seemed to trivialize the illness. I'm not sure how to rebuild this bridge with Amy Dockser Marcus.

Patients can be their own enemies. That's very unfortunate. We as a group have to choose our battles very wisely. Even Hillary Johnson was impressed by the new direction of CAA. Things are changing rapidly. What are the most important issues? In my opinion,
1) research is a big one and research funding
2) Biomarker. Who finds it does not matter much to me.
3) Access to FDA approved drug.
4) disease assigned to a medical specialty, not psychiatry and not a weird one either, like "environmental illness".
 
Status
Not open for further replies.