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The Clinician's Coalition: Another Ray Of Light For ME/CFS

Wednesday 20 March 2019

 

From Health Rising:

 

Creative idea
 

The Clinician’s Coalition: Another Ray of Light for ME/CFS

By Cort Johnson
March 13, 2019
© 2019 Health Rising

Filling the Landscape of Unmet Needs

After a successful 2017 Working Group meeting at Stanford involving dozens of top researchers, Ron Davis turned to Lucinda Bateman, and said: now you have to do the same thing with doctors.

She did. With Mary Dimmock’s help, Dr. Bateman produced the first ever ME/CFS Clinicians’ Coalition in 2018 and they are about to do it again – and what better place to do it than at the Bateman Horne Center (BHC) – the doctor and patient education center for ME/CFS.

The BHC likes to talk about filling the “landscape of unmet needs in ME/CFS” – a Grand Canyon-sized hole which involves doctor education. The CDC has estimated that up to 85% of people with chronic fatigue syndrome (ME/CFS) remain undiagnosed. That’s a lot of sick people going to doctor’s offices, getting bad advice and getting worse.

It’s also a huge untapped population of people who could contribute to ME/CFS in myriad ways. When I think of them, I think of Mary Dimmock. A former pharmaceutical executive with a son with a severe case of ME/CFS, she’s authored a book on ME/CFS, co-authored a paper on the disease burden in ME/CFS, and has been a driving force in many ME/CFS initiatives over the past five years – including the Clinicians’ Coalition.

I think of Linda Tanenbaum. Linda had zero experience running a research foundation but she had a daughter with ME/CFS and a burning commitment to help out. Just three years later, her foundation – the Open Medicine Foundation – is helping to fund millions of dollars of ME/CFS research a year.

When I think of the many undiagnosed people out there, I think of the Mary Dimmocks and Linda Tanenbaums out there – the many talented people who could and would put their skills to work if only they had the opportunity. I think of the Maureen Hansons and the Paul Gyres – researchers with family members with ME/CFS – who are now participating in our work.

The first step in their path to making a difference in ME/CFS took place in a doctor’s office and a diagnosis of ME/CFS.

 

Full article…

 


 

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