Thread by @ABrokenBattery

#MECFS is often referred to as neglected, under-researched and poorly understood. However this doesn't even scratch the surface when it has been described as one of the biggest medical scandals of this century.

#MEAwarenessDay

For the last thirty years, an influential group of psychiatrists and researchers have dominated the understanding and treatment of ME.

They redefined it as an ambiguous condition characterised by unexplained fatigue and argued that it was not a disease but rather due to patients being inactive, mistakenly believing they are seriously ill.

They developed CBT and Graded Exercise to address patients' false illness beliefs and deconditioning, but these were recently withdrawn by major health agencies because they were not effective, the research was flawed, and patients reported they were harmful.

This has led to widespread misunderstanding with 80% of doctors mistakenly believing ME is a psychological condition despite it being classified as a neurological disease by the WHO in 1969.

drive.google.com/file/d/1R6MgsN…

The consequences have been devastating, for example: an Action for ME Survey in 2017 found that 1 in 5 parents of children with #MECFS face child protection proceedings because professionals don't understand or believe in the condition.

actionforme.org.uk/uploads/pdfs/f…

Highlights from an episode of BBC File on 4 in 2017 provides a glimpse into some of these experiences.

The NHS thought Jane had an eating disorder rather than #MECFS and Isla's family were accused of fabricating her illness.

bbc.co.uk/programmes/b08…

The draft 2007 NICE guideline recognised weight loss was a possible feature of ME and recommended a dietitian, nutritional support and tube feeding in extreme cases.

However, Barts ME/CFS clinic (led by Peter White - a proponent of CBT and Graded Exercise and author of the discredited PACE trial) fedback stating "This is alarming and arguably negligent advice, which we strongly condemn."

NICE responded "this recommendation has been removed"

14 years later, the 2021 NICE Guideline now recognises nutritional issues in ME and recommends a dietician and monitoring for weight loss.

To learn more about Severe and Very Severe ME watch this 8 min explainer video.

#MEAwarenessDay