5 Quotes by Charlotte Blease

hierarchies of diseases exist among patients and healthcare professionals...and when it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list

While there are now fresh moves to revise NICE guidelines on CFS/ME in the United Kingdom, these advances are likely to have been hindered by the scale of epistemic injustices experienced by patients with ME/CFS (NICE 2017). Of the valuable participants in the ongoing discourse about ME/CFS, it is patients who are not only the most vulnerable but have the most to lose.

ME’ as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndrome’; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs, as well as social trends and social care systems that reward illness seeking behaviours.

Studies also show that doctors may view ME/CFS patients as hostile or combative when they challenge the incumbent biopsychosocial model of ME or CFS. Yet rather than feeling threatened or worse still, viewing the patient as uncooperative, there is an opportunity to discuss the limitations of medical knowledge. Here, we believe there is an ethical duty for candour and honesty: indeed, where there are clear gaps in medical knowledge the patient voice should have even more standing.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs.