A personal history of ME by Jenny Wilson

Finding my community

Today’s piece is the first in a series of articles we’ll be sharing from Jenny Wilson.

At the age of 19, Jenny’s life was changed by a severe infection that developed into ME, eventually ending her teaching career and plans to become an educational psychologist.

In the 1980s, she founded the Bristol ME Association together with Dr Richard Sykes, who also founded the charity Westcare. She is now based in Devon, where she has chaired the Devon ME Association and facilitates Dr Weir’s private clinic.  In her spare time, Jenny enjoys researching and writing on historical topics; in 2021 she published her first book and has three more in the pipeline.

A personal history of ME by Jenny Wilson

Part 1: Finding my community

How it began

I first became ill when I was a second-year college student more than five decades ago. After a severe but unidentified infection and persistent very high fever, followed by a brief episode of difficulty with verbal communication, I was left with overwhelming exhaustion, light and noise intolerance, difficulty walking, loss of balance and other symptoms. However, when the fever resolved, I was judged fit to continue my studies. It would be another 17 gruelling years before I received a proper diagnosis.

I devoted what energy I had to completing my degree and becoming a teacher. Over the next 12 years, I worked in the kind of viral ‘soup’ typically produced by any class of teenagers. Each infection I succumbed to was more severe and prolonged than the last, until I was coughing up blood to clear my lungs before I could start each day. I fought the symptoms, unaware of the potential long-term harm this was doing.

I could not carry on with my planned career to become an educational psychologist, and it stole my chance to have a family.

In April 1982, I suddenly became severely ill and could no longer even teach. I did not have the stamina needed, and dyscalculia meant I could no longer teach my specialism – mathematics. My last contact with pupils was when they handed me a petition at my home asking for me to return. They couldn’t understand what was happening, and nor could I.

I lost my income and, without a supportive GP, I was unable to claim incapacity benefit. I was about to discover just how cruel the medical profession can be.

The long-awaited diagnosis

Four years later, an old friend, Dr Richard Sykes, introduced me to Lord Edward Baldwin, who kindly took me to his Oxford house and made an appointment for me to see a doctor he trusted. I was given my first and only neurological examination, during which the doctor explained the abnormalities he found. Based on this meeting and the newly published diagnostic guidelines by Dr Melvin Ramsay, the doctor’s verdict was severe myalgic encephalomyelitis (ME). I had never heard of it and asked him to write it down. He did so and handed it to me on a death certificate! I burst into tears with relief at the long-elusive diagnosis.

Naively, I thought that with the diagnosis would come the treatment. I was wrong. Instead, I was admitted to a nursing home 200 miles from my home. During my miserable first night there, I remember a nurse hissing in my ear: “It is better to be dead than to have what you have.” I was trapped in a nightmare. 

My time in the nursing home would be brief. Not only was the cost beyond the means of someone without a salary but, two weeks later, the doctor convinced me to call Richard to get me out of there.

Cruelty and kindness in Bristol

In early 1987, I was in a ward in the Bristol Eye Hospital dedicated to chronically and terminally ill younger people. One patient welcomed me by shouting out, “You only leave here in your box, love!” I wasn’t going to like it there either.

The doctor was wonderful and kind but some of the auxiliary nurses were brutal. Food, for example, was denied if I didn’t walk to the dining room for a meal. This feat was often beyond me and I recall some of the nurses simply stepping over me after I fell to the floor. When other patients tried to help me, they were told to leave me lying there.

I recall one nurse gleefully pinning up on the noticeboard a newspaper article that included the term ‘Shirker’s Disease’ in the heading, followed by an account of ME. At the end of three months, I was extremely relieved to escape that place – in my wheelchair, not in a ‘box.’

I rented a room from Richard to remain close to my brilliant Bristol GP, who arranged for a carer to visit every day for two hours. I will always be grateful to Kathleen, who instinctively knew how to care for someone with severe ME. The GP even took the time to visit and sit by my bed every week – just seeing him walk into my room kept me sane. He would sit quietly beside me or spend his time repairing my wardrobe or re-tuning my tiny TV. I marvelled at his kindness.

The contrast with my Devon GP practice could not have been starker. They remained hostile, not only to me, but also to other doctors who tried to educate them about ME. In the end, my Bristol GP warned me never to have contact with them again.  

The start of the Bristol ME Association

At this time, I knew no one else with ME, so Richard and I placed an advert in the Bristol Evening Post and invited anyone else with the illness to a meeting. We thought maybe six people would turn up, but we were very wrong!  People flooded in. Some were in wheelchairs, and some on stretchers. I recall there were more than 200, and still they kept coming. The Bristol ME Group was born.

Members of the ME Association head office visited, and we had lunches with yachtswoman Claire Francis and Martin Lev, who were forging ahead with their charity Action for ME.

It was then that we heard of a young clinician called Dr William Weir. He had just returned from Africa and was working in the Royal Free Hospital, London, renowned for the first recorded major UK epidemic of the illness in 1955 after which Ramsay coined the name myalgic encephalomyelitis. We invited Dr Weir to be one of our first speakers.

It was another 30 years before we were re-acquainted and set up a clinic together in my dining room. 

Home to Devon

The Bristol ME Association developed strong foundations. However, due to financial circumstances I was forced to return home. I didn’t know how I would survive with no medical or social support. It was thanks to timely interventions by out-of-area doctors, one of whom took me into her own home to care for me at crucial times, that I survived the next 25 years.

Shortly after returning home, I took over the chairmanship of the Devon ME Association, ably supported by a committee of dedicated and talented people. Nearly all the organising took place from my bed and the Association flourished.

We had many interesting speakers, held fully accredited lectures for doctors, and arranged talks for headteachers, school nurses and social workers at the Postgraduate Medical Centre. According to the consultant who chaired our meetings, we were attracting the largest audiences in the history of the hospital.

I had found my community.

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