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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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IMEA to meet with CDC
- Thread starter Ana
- Start date
eric_s
Senior Member
- Messages
- 1,925
- Location
- Switzerland/Spain (Valencia)
Hi Ana
That sounds like a good start for a new organisation... :Sign Good Job:
I would ask them about funding. We get far too little. Mention to them the numbers of people affected by ME/CFS, the gravity of the illness, the estimated cost to the national economy and the funds allocated for research and then compare that to other illnesses. Say that it's clearly too little and not appropriate. Ask if they plan to change that.
Eric
That sounds like a good start for a new organisation... :Sign Good Job:
I would ask them about funding. We get far too little. Mention to them the numbers of people affected by ME/CFS, the gravity of the illness, the estimated cost to the national economy and the funds allocated for research and then compare that to other illnesses. Say that it's clearly too little and not appropriate. Ask if they plan to change that.
Eric
dancer
Senior Member
- Messages
- 298
- Location
- Midwest, USA
Great questions. I especially like the questions about the website. That has direct, immediate, individual negative impact on patients. I know my primary care doc looked at their site for info, and then shrugged and said, "I guess exercise and psychotherapy help." Those led to great frustration and worsening of symptoms for me.