Thank you to @RichelleHunt & @Warwick_Long for this discussion on living with #mecfs. Sadly the program also demonstrated how ingrained it is in the medical profession to label illnesses medically unexplained & offer psych treatment when the cause is unclear. Thread 1/10 https://twitter.com/abcmelbourne/status/1357532219670102016

When the medical profession doesn’t know what causes a condition, the default is to assume it’s psychological. Nowadays, it’s labelled Medically Unexplained Symptoms (MUS) and psychological treatment is offered. 2/10

In reality, they should be called Medically Not Yet Explained Symptoms (MNYES). Medicine is littered with examples of conditions which were once considered largely psychological, only to be reclassified when the biology was understood. 3/10

When ME/CFS patients object to being told, without evidence, that they have a psychological illness, the medical profession often wrongly claims that patients are stigmatising mental health issues and are engaging mind-body dualism, when the mind and body can’t be separated. 4/10

ME/CFS patients aren’t ignoring the role of psychological factors in the illness. We know stress and other factors can play a role in triggering the illness and also exacerbate it. Many patients have explored meditation, psychotherapy and other approaches to help them cope. 5/10

The medical profession may claim that it’s offering “whole of person” care, but a close look at the treatments offered for a condition like ME/CFS compared with one which the medical profession has accepted as biological (eg: MS) shows this not to be true. 6/10

It isn’t patients who are engaging in the mind-body duality, it’s the medical profession. Once a condition has been labelled MUS, the body and emerging biomedical research evidence are ignored, the focus only on psychological approaches (to change thinking and behaviour). 7/10

The medical profession argue that the treatments offered are the ones with evidence to support them, but that’s not true. NICE (UK) released a 1000 page review of all clinical trials for ME/CFS, and found evidence for all treatments (both pharma & non-pharma) to be low. 8/10

One day, ME/CFS will be explained (research is progressing all the time). But there will be patients with other yet-to-be explained conditions who will go through this. The genius (and scary thing about) MUS is that it will move on. Already some are applying it to long-COVID 9/10

What ME/CFS patients want are treatments that work. Many ME/CFS patients have already tried the psychological approaches which the medical profession is offering. When will the medical profession actually start listening to patients when we say the treatments didn’t work? 10/10