fresh_eyes
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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.
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"The grant is being provided to assist IACFS in their continued research and advocacy work and to support an upcoming workshop to develop clinical guidelines for chronic fatigue syndrome," stated Dr. William Carter, CEO
marie said:Frankly, I don't see why the IACFS/ME can't just put their weight behind the Canadian Clinical Guidelines. Why reinvent the wheel?
Otherwise, I'm all in favor of seeing some of the Ampligen profits go to the IACFS/ME.
Let's hope other drug manufacturers follow this lead.
It was agreed that setting up study criteria for the type of data that should be collected in a standardized way in CFS studies would be a good idea and not an impossibly time consuming task. For instance, there is an effort underway to provide standard assessments for the Canadian criteria--a worthwhile effort as these criteria may better capture CFS than other definitions.
The CFIDS Association of America The manufacturer of Ampligen has made an unrestricted grant to the IACFS/ME to convene a meeting for the purpose of writing clinical guidelines for CFS. IACFS/ME is an organization of clinicians and researchers interested in CFS; our scientific director Dr. Suzanne Vernon is on the board of IACFS/ME.
I'm still getting my feet back underneath me but this was good news and a good reason to say that I'll be back in force soon.
Frankly, I don't see why the IACFS/ME can't just put their weight behind the Canadian Clinical Guidelines. Why reinvent the wheel?