pollycbr125
Senior Member
- Messages
- 353
- Location
- yorkshire
problem solved
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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Do the committee members *really* understand how desparate we are? I know it's pipe dream, but if they spent even 15 minutes browsing through this forum, they would know.
I'll be astounded if the meeting accomplishes anything useful. My impression is that they are working on a plan to develop a plan to do something someday if there is any money left over after feeding the military machine.
Oh, hi, now we're getting an explanation about how we need biomarkers and objective measures of disease severity in order to evaluate potential treatments. News flash!
I don't want to slag on the speaker, I think she is genuinely working hard to be informative, but these are NOT issues that never occurred to the ME/CFS community. In fact I often think we talk of little else!