Trigger warning: suicide, medical neglect, abuse of power
In October last year, I shared two blogposts exploring the academic (chiefly, psychiatric) lobbying of UK government officials on the subject of ME/CFS during the 1990s (see
here and
here). The data analysed comprised previously redacted letters and minutes of meetings made publicly available by
Valerie Eliot Smith, British barrister and person with ME, and concerned the positioning of ME/CFS in the UK government’s Disability Handbook. The academics in question were very keen to convince government officials at the Department of Work and Pensions (DWP)* that ME should not be separated from CFS, that CFS was the preferable term, and that CFS (and by extension, ME) was a largely subjective illness, perpetuated by patients’ ‘maladaptive’ psychology and recoverable via psychosocial health interventions such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET).
*At the time of these academic-state exchanges, the DWP was called the Department of Social Security; I use DWP throughout for simplicity.
This psychosocial tale has become taken-for-granted ‘reality’ for many clinicians, researchers, benefits assessors, journalists and other social actors who help shape wider societal attitudes toward ME/CFS, despite lack of evidential support. As most of us in the chronic illness communities know only too well, this collection of truth-claims is now being extended to
long Covid. In the case of ME/CFS and more broadly in the arena of ‘medically unexplained symptoms’, these truth-claims have had a devastating impact: widespread medical and societal
misrepresentation and neglect, resulting in delayed diagnosis or
misdiagnosis,
social exclusion,
early death, and
suicide.
