Study abstract

Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost two decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment.

We wanted to find out if there was anyone else with a similar experience to my wife’s or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom.

This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not unique. It begs the question why are they being neglected and why is there not urgent research into the understanding and alleviation of this devastating physical symptom? What is the mechanism, are there different mechanisms at play and are there any possible ways to treat it?

Greg Crowhurst

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Stonebird website: The Lived experience of Severe ME