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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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ME/CFS alert latest episode (exercise intolerance)

RYO

RYO

Senior Member
Messages
350
Location
USA
Gingergrrl said:
I knew he was researching all kinds of things, and different illnesses/diagnoses, but I was not sure what treatments he was offering besides Mestinon (and that was what confused me if the only option was Mestinon). But it sounds like Mestinon is only one option if they are also offering IVIG, and I am assuming in the future they will offer other treatment options, too.
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@Sushi

He does offer other treatments besides mestinon and IVIG. My view is that he is going out on a limb by offering these "off label" treatments. At this point in time, we lack an objective biomarker. The invasive CPET for now serves as the objective reproducible scientific test as does the skin biopsy for SFN. I am sure he is using this data when he petitions the various insurance companies to approve often expensive treatment options.
 
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