The Tangled Story of ME/CFS

Hard to believe that patients with ME have been treated so poorly for decades, but they have, and the stirring story of their resilience and unwillingness to be forgotten is brilliantly portrayed in these videos. If you really want to know about the most serious health challenge facing our planet, one that still has not been recognized, be sure to watch these videos and then demand the change that is so desperately needed.”
Leonard Jason, Ph.D.
Professor of Psychology. Director, Center for Community Research, DePaul University, Chicago.

Chapter 1. ME: the story begins
Chapter 2. ME is rebranded as a psychogenic illness: chronic fatigue syndrome
Chapter 3. A confusing medley of names and definitions undermines research efforts

Chapter 4. The widespread and pernicious impact of a careerist psychiatric lobby
Chapter 5. The devastating failure of the medical profession
Chapter 6. Fundamental systemic injustice

It is interesting to consider what happened to research into Alzheimer’s disease, as this may make it easier to acknowledge how ME/CFS research has been corrupted.

In The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades  in Statnews, Sharon Begley writes:

“The most influential researchers have long believed so dogmatically in one theory of Alzheimer’s that they systematically thwarted alternative approaches. …scientists whose ideas fell outside the dogma recounted how, for decades, believers in the dominant hypothesis suppressed research on alternative ideas. They influenced what studies got published in top journals, which scientists got funded, who got tenure, and who got speaking at reputation-buffing scientific conferences. This stifling of competing ideas, say a growing number of scholars, is a big reason why there is no treatment for Alzheimer’s.”  The same could be said of ME/CFS.

Contributors

Mary Dimmock: Independent researcher and advocate
Jonathan Edwards: Emeritus Professor of Connective Tissue Medicine, UCL
George Faulkner: Independent researcher
Catherine Hale: Founder Chronic Illness Inclusion Project
Brian Hughes: Professor of Psychology, National University of Ireland, Galway
Leonard Jason: Director of Center for Community Research. Professor of Psychology. DePaul University, Chicago
Caroline Kingdon: Research Fellow, Research Nurse and UK ME/CFS Biobank Lead
Graham McPhee: Citizen Scientist
Carol Monaghan MP Member of Parliament for Glasgow North West
Dr Nina Muirhead: Director Doctors with ME, Speciality Doctor Dermatology Surgery NHS Buckinghamshire
Valerie Eliot Smith: Barrister and advocate
Dr Nigel Speight: Consultant Paediatrician. Paediatric Medical Advisor ME Association and TYMES Trust, Medical Advisor The 25% Group
Dr David Systrom: Assistant Professor of Medicine, Pulmonary and Critical Care, Brigham and Women’s Hospital. Harvard
Michael VanElzakker: Neuroscience Researcher, Massachusetts General Hospital, Harvard Medical School
Sue Waddle: Vice Chair ME Research UK