I thought I had food poisoning – it was far worse

I couldn’t get out of bed. I felt drained, constantly. All my body wanted was more sleep.

When I did drift off, I woke up not knowing where I was, sweating so much I was soaking wet and freezing. My muscles and joints ached and I had migraine-like headaches and a persistently sore throat. 

For about six years, this was my life as someone severely affected by a condition known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

It is a complex, long-term medical condition that affects a person’s ability to function. The most common symptom is extreme, debilitating fatigue, that can be worsened by activity and isn’t improved by sleep.  

This in turn affects thinking, memory, speech, standing, walking, sleep and daily tasks. 

An estimated 404,000 people inthe UK are affected and sadly, it isn’t a condition anyone can predict. For many, the trigger is an infection (either viral or bacterial). 

My symptoms began in July 1999, after I became ill while on holiday with friends in Greece. What I thought was food poisoning was diagnosed by Greek doctors as a non-specific infection. 

Back home in Jersey, I was treated in hospital for dehydration and had tests to determine the infection’s source. I was discharged without any answers, only to end up back there weeks later after having seizures. 

A year on, I was no better and hadn’t been able to return to work. As well as the crippling, flu-like symptoms, I was increasingly frustrated and confused that no one could say what was wrong with me.

Eventually, in May, 2000, having ruled out every other condition, my GP diagnosed ME/CFS. 

I prayed for a different diagnosis, one that was more accepted and visible – ME/CFS is regarded with skepticism by many, including medical professionals.  

It’s something that I experienced – when I was discharged from hospital, a senior healthcare professional told me to just push through it. 

Luckily, my employer offered me a disability pension. I was delighted that they were supporting me in this way, but also regretful that it marked the end of my promising career.  

But it was hard. I tried to push through even when my body was screaming not to and this led to an erratic, persistent period of relapse and relative remission. 

I became very depressed and eventually tried to take my own life. I worried about the future, my independence; grief became too much for me to cope with. I just couldn’t see a way out. 

My daily life became unrecognisable from before. I got through it with distractions – by setting small goals like listening to the radio or watching TV if I was bed bound. Or if I was able to read, I would start one sentence at a time, until I had to stop.

In 2003, I was referred to Professor Anthony Pinching, aspecialist in immunology with an interest in ME/CFS. He was the first doctor who validated my experiences and prescribed a drug that reduced my nausea and vertigo, which eventually contributed to stabilising my symptoms more generally. 

By 2005, I was able to go to college part-time which led to university full-time as a mature student reading ancient history at Lampeter. 

The course made me feel very welcome as a disabled student – I could access various tools like speech-to-text, virtual lectures, extended deadlines, and peer support. Sadly, repeated bouts of ‘freshers flu’ meant I missed the dissertation deadline and ended up leaving university. 

I felt gutted and it felt never ending.   

During this time, however, a referral to Cornwall’s ME/CFS specialist service and access to other professionals followed, all of whom helped me learn how to live with the limitations of my condition and improve my quality of life.

They reinforced that ME/CFS was a real medical condition and I felt validated.

It was also the first time I got to meet other people with ME/CFS – it was incredibly helpful to hear that their stories were similar to mine, and to realise I wasn’t alone. 

It took a long time to see meaningful changes, but, gradually, my physical ability and my cognitive function improved considerably to the degree that 10 years ago, I was able to start working for the charity The ME Association as a part-time volunteer.  

Since then I have worked my way up to becoming the Head of Project Development full-time. 

I’m lucky to have an understanding, flexible employer, who allows me to work from home all the time. 

Returning to work has enabled me to regain some independence and my new furry friend, Buster, has brought a lot of joy back into my life. 

I still live with ME/CFS but I am better able to cope with and manage the condition and other aspects of my health. 

But the Department of Health must take ME/CFS seriously. It needs to provide appropriate care and fund more research if we are to ever understand what causes this degree of chronic ill-health. 

Only then will all ME/CFS patients be able to see the light at the end of the tunnel and live life the way I am – happily, at last. 

ME/CFS never leaves you and you never know if you’re going to relapse but I’m resilient and try to maximise the pleasure and enjoyment that I get out of life.   

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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