M.E is a devastating illness characterised by pre- and post- exertional illness. These are most commonly experienced as extreme fatigue, pain and sleep dysfunction. The M.E issue is paradoxical, doctors and patients share an impossible bind: Exercise can provoke highly aversive symptoms, yet exercise remains vital to health and well-being.
Management strategies such as Graded Exercise and Pacing fit within a spectrum of responses, each appearing to be appropriate for a particular level of activity. M.E patients can and do report improvement or recovery, however many people remain in darkness and pain for decades.
M.E patients report social and medical mistreatment, yet M.E activism has itself become extreme, harmful and irresponsible. M.E patients can attack those who try to help them. The M.E debate remains fractious, polarised and unsafe.
Within a context of extreme symptoms, social stress and neglect some M.E patients have chosen to end their lives. Social networks have provided a lifeline and support network for M.E patients, however, much of this support is conditional upon the acceptance of community dogma, even where this goes against evidence or inhibits recovery.
M.E patients have a just cause for broad, fair and fully funded investigation, treatment and research, however at a fundamental level, M.E will only progress when animosity is transformed into healing and the doctor-patient relationship is restored. One can only hope that young people with M.E and newly qualified physicians refuse to repeat the previous generation's battles and take on this great and worthwhile task.
James David Chapman.
@batteredoldbook
Quick summary of the M.E issue.
