today is myalgic encephalomyelitis awareness day if you want to read a little about it. this date was chosen bc it’s florence nightingale’s birthday and she was bedridden for a long period by what is thought to have been ME.
ME was originally understood as a post-viral condition with features similar to MS & polio which generally improved after a few months of rest, but in the late 20th century, figures with vested interests began to claim that ME was a psychosomatic fatigue-based syndrome and that the best treatments were cognitive therapy, graded exercise, and ‘believing’ you will get better, despite this approach causing many patients to decline. under this model, patients are blamed for not getting better and are told that if they’re still unwell, it’s only because they didn’t believe enough or exercise enough. children are told this, patients are told this when they’re bedbound, unable to speak, unable to swallow, tube fed, etc.
gradually the guidelines are being changed to reflect the fact that exercise beyond one’s individual limits causes profound damage to ME patients, but it’s a slow process and the decades of (ongoing!) harm are unforgivable. the care ME patients receive is of such a wilfully poor standard that ive foregone the ER in the past because i would rather die than go there again and be treated as less than human. bear in mind this is under free nationalised healthcare. i skipped free healthcare because that’s how bad it is. ME patients frequently slip through the cracks—after becoming severely disabled from harmful medical advice or forced treatment, many patients are too fearful to ever see a doctor again. it’s pretty common to hear of a patient who has been bedbound for over a decade and hasn’t seen a doctor since their first year of illness. home visits are often denied and hospitals often refuse to accommodate our basic needs (e.g. a dim environment, since light can cause long-term symptom crashes).
the diagnosis of ME has been stigmatised, minimised, and watered down, and patients face neglect and iatrogenic harm on such a scale that at least half the ME patients i encounter have been made permanently and PREVENTABLY worse by inappropriate treatment early in their illness, like i was as a kid. most patients are women, especially the patients who become severe or die; misogyny is a factor, and frequently the patients who face significant medical harm are children or young people who are trusting and can’t stand up for themselves. being traumatised on a systemic scale by the medical establishment also means that these people do not report back to doctors afterwards so the harm goes unreported much of the time. ME charities try their best to document these cases.
25% of patients are severely affected like me. basically, the body struggles to maintain normal homeostasis so any activity can cause symptom worsening (aka post exertional neuroimmune exhaustion) including the activities of daily living like brushing your teeth, speaking, digesting food, being exposed to minor sensory stimuli like light and ambient noise etc.
various links if you want to take a look:
caring for the patient with severe ME
life threatening malnutrition in severe ME
the death, mistreatment, and starvation of maeve boothby o’niell
why patients with ME are housebound or bedbound
graded exercise does not restore ability to work
patients remain severely disabled after specialist cognitive behavioural therapy
(note: ‘chronic fatigue syndrome’ is an alternative name for ME, but i don’t use it due to the large-scale harm and damage done under that name)
