This week is #MEAwarenessWeek.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, often referred to just as ME / CFS is a little understood, tragically underfunded neuro immune illness that affects an estimated 17million people worldwide, a quarter million in the UK.
It is debilitating. Those who suffer from ME are habitually dismissed by the medical establishment and stigmatised by society. 75% of sufferers are women. The symptoms range from severe exhaustion after minor physical effort to a complete inability to move or speak necessitating feeding by tube.
The causes are not fully understood and there is currently no cure. Most patients do not recover.
The very nature of this illness - as with many disabilities - locks people away from society, keeping those suffering out of sight. They are the #MillionsMissing.
Given the large number of sufferers and the severity of the effects of ME it is outragous that more is not being done. Especially since there is real hope of a cure.
As far as I can tell there are several reasons for this - rear guard action by the psychiatric lobby involved in ME to protect their damaged reputations (see critique of the PACE trials); the fact that ME does not fit easily into any one clinical department; and perhaps most importantly, because most of the sufferers are women who because of their condition have to sit invisibly at home imprisoned in their non-functioning bodies - they do not die, but neither do they have the energy to fight.
This #MEAwarenessWeek spare a thought for those who can’t be with us - who will nor re-emerge as covid restrictions lift- spare a pound for some long overdue research, spare a moment to learn a little more, to pierce a hole in society’s collective ignorance.
On Tuesday 18th we do a deep dive into the human impact of this illness and the state of the scientific and medical landscape at the launch of Waiting for Superman, please tune in.
We have a piece by activist Pippa Stacey on disability rep in books, and these books below, specifically about M.E. / CFS.