ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members. Disclaimer ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives. Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services. |
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The Clinician's Coalition: Another Ray Of Light For ME/CFSWednesday 20 March 2019
The Clinician’s Coalition: Another Ray of Light for ME/CFS 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.
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