ME/CFS: diagnosis and management – NICE Guideline 2021. page 80:

“A strong theme in the evidence was the lack of knowledge, understanding and up-to-date training that health and social care professionals have about ME/CFS. [The committee] recommended that all health and social care staff who deliver care to people with ME/CFS should be trained so they are able to provide the care in this guideline.”

A transcript for this video is available here

“What a lot of pain and heartache could be spared if all doctors were properly informed and able to guide their patients in those crucial early stages.”

–  Kay Gilderdale.
Kay’s daughter Lynn died after sixteen years of very, very severe ME, precipitated by graded activity management.

“Much as researchers want to make breakthroughs and help patients, their profession rewards them for publishing studies that are quoted by other researchers and winning funding for their research. They are not specifically rewarded for benefitting patients.
Researchers’ career progression – and often their very jobs – depend on these academic measures of success, and so that is what researchers will inevitably focus on.”


  • Prof Brian Hughes Professor of Psychology, National University of Ireland Galway.
  • Carol Monaghan MP – House of Commons debate – 2019
  • Karen Lee MP – House of Commons debate – 2019
  • Dr Nina Muirhead Dermatology surgeon Buckinghamshire NHS Trust, Chair CMRC Medical Education Working Group, Director Doctors with ME.
  • Prof Jonathan Edwards Emeritus Professor of Medicine, University College London.
  • Dr Charles Shepherd Hon Medical Advisor ME Association.
  • Dr Luis Nacul Co-principal Investigator CureME London School of Hygiene and Tropical Medicine. Medical Director of the Complex Chronic Diseases Program at British Columbia Women’s Hospital in Vancouver, Canada.
  • Dr Chris Snell Workwell Scientific Advisory Committee Chair. Former Chair CFS Advisory Committee to the US Secretary for Health.
  • Prof Mark VanNess Professor and Co-Chair, Health, Exercise & Sport Sciences, University of the Pacific, Stockton. Scientific Advisor Workwell Foundation.
  • Dr Ben Marsh Neurodisability Paediatrician and representative on the James Lind Alliance Priority Setting Partnership Steering Group
  • Tom Kindlon Citizen scientist. Assistant Chairperson Irish ME/CFS Association.