Passionate Pragmatist: Carol Head And The Fight For ME/CFS Equality: The SMCI Pt. I

Cort Johnson

 

As we head for International ME/CFS Awareness Day and the biggest advocacy effort that I’ve ever seen, it’s a good time to look at The Solve ME/CFS Initiative (formerly the CFIDS Association of America) – the oldest and most prominent chronic fatigue syndrome (ME/CFS) organization. For years the only ME/CFS organization with a professional staff, the SMCI has engaged in more research, advocacy and patient outreach than any other.

Carol Head came to the SMCI at an interesting time. Under Suzanne Vernon it’d been transformed into a “research first” organization which developed one of the first  Biobanks and engaged in innovative research that brought a number of new researchers to the field. Still, the organization’s collaboration with the CDC, its stance on XMRV (though correct in the long run) and some other issues had caused it to lose some support in the patient community.

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