Anita’s very first action of M.E advocacy


In July 1987, after living with a baffling, painful and increasingly distressing welter of symptoms for 8 years, I am finally able to receive a diagnosis of Myalgic Encephalomyelitis (also called Post Viral Fatigue Syndrome at that time) from the eminent researcher, of 40 years clinical experience, Dr John Richardson (Ryton, England UK)

I carry on working in my vocation of primary school teacher with my class of over thirty 4–5 year-old children, for just 5 weeks of the autumn term, at which point I find I can no longer stand upright.

I apply to take a ‘half ‘ post, hoping to recover by working fewer hours, but I am advised by the Chief Inspector of Primary Schools to take a complete leave of absence, to be reviewed after 12 months.

My health continues to rapidly deteriorate.
I am 97% couch- and bed-confined and it is quite clear that I can’t work. In March of 1988, my salary is reduced to half-pay,

July 1988

Pauline Stewart, owner of a hairdressing salon, and the director Royston Mayo, organise Tyne Tees Television News to interview four professionals about living with ME and I am invited to participate.

We are interviewed by the reporter, Kathryn Holloway, and discuss how we are not work shy and only wish to continue to pursue our various careers, including bereavement counsellor, hairdresser and, myself, teacher.

This is quite a groundbreaking piece of journalism as, due to the stigma that Myalgic Encephalomyelitis is a ‘Yuppie’ disease, or merely hypochondria or laziness, many, or even most, people affected, remain anonymous.

At one point in the interview I say: “ME has had most of my twenties, I don’t want it to have my thirties too.”

I am asked if will provide a follow-up interview about one individual’s experiences of M.E and the next day Kathryn, the camera and sound crew come to my home.

I am suffering PENE (Post Exertional Neuroimmune Exhaustion)
so the interview takes place in my bedroom, reflecting the payback experienced after the previous day’s efforts.
I cannot sit up in my bed whilst the crew are setting up their equipment, so I am interviewed lying completely flat, wearing dark glasses due to light sensitivity and elbow protectors to try to alleviate pressure-care problems on my very thin arms.

October 1988

On October 5th, after examination by the Department of Education’s medical officer, I am retired from my career of teaching, on health grounds, at the age of 31 years.

October 4th 2018

Tomorrow will be the 30th anniversary of my premature retirement from the sphere of education.