ME/CFS Crisis: Millions Abandoned by Healthcare

Millions globally are experiencing devastating consequences due to the chronic condition ME/CFS, characterized by extreme fatigue and a range of debilitating physical and cognitive symptoms. Despite emerging scientific understanding and revised official guidance, patients report widespread neglect and abandonment by healthcare systems.

Many patients are still inappropriately offered treatments such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET). NICE in the UK updated its recommendations in 2021, noting that GET is not only useless but actively dangerous, as exercise can trigger post-exertional malaise (PEM), a core symptom that can render patients bedbound.

However, evidence suggests these changes have had little impact. Reports indicate that doctors are often unaware of the new guidelines, defensively reiterating discredited treatments, or even rebranding them as 'building tolerance.' Some patients face outright disbelief, with parents even accused of fabricating their children's symptoms.

Systemic failures are evident, with very few medical practitioners completing necessary training on ME/CFS guidance. For instance, only 74 practitioners in England had completed a new learning module after a year. This widespread ignorance and continued reliance on outdated practices contribute to a severe social crisis.

The issue extends beyond the UK, with countries like Sweden, Australia, Switzerland, Norway, Finland, and the Netherlands also failing to adequately support ME/CFS patients. A public inquiry is increasingly seen as necessary to address the ongoing neglect, mistreatment, and dangerous medical advice.