ME/CFS Symptoms vs. Depression: Why My Chronic Fatigue Was Misdiagnosed For 3 Years

You know your body better than anyone – but what happens when no one listens? Welcome to Ms Diagnosed: a HuffPost UK series uncovering the reality of medical gaslighting. With new stats showing that 8 in 10 of women have felt unheard by medical professionals, we’re sharing the stories of seven whose lives were nearly lost to the gap between their symptoms and a system that refused to listen. As the UK introduces Jess’s Rule – a new mandate for GPs to ‘rethink’ after a third visit – we’re exploring why the medical system is still failing women and how we can start to fix it.

At the beginning of 2023, I’d reached a point where I was so exhausted, I’d go days without showering.

My partner – who had effectively become my carer – would help me comb through my hair because it was so matted. He was doing all the cooking and cleaning; I just wasn’t able to do anything.

Each day, I’d wake up late – feeling unbearably tired – and would then most likely fall asleep on the sofa at home. I’d force myself to leave the house occasionally; but when I did, I’d always feel even worse.

Throughout it all, my doctors said my symptoms were due to depression, and I believed them. I thought they’d know if it was something more. I trusted them when they said no follow-up was needed.

I was completing my PhD and working as an Associate Lecturer at the time – but by the end of February 2023, I’d had an enormous crash.

My workload had briefly increased to three times the amount of teaching. I’d known about this when starting the module, but never would have agreed to it if I’d known what was really going on with my health.

My fatigue got so bad that it led to severe flu symptoms like sore throat, blocked nose, nausea and fevers, together with joint pain issues and sensitivity to noise, touch and light. I felt absolutely dreadful; I had to sit instead of stand during seminars, and any time I wasn’t teaching, I was sleeping. The fatigue got so bad that it was a struggle to even move.

I ended up having to take what I thought was a temporary leave of absence that March – but it wasn’t temporary.

I never finished my PhD. Instead, I’m effectively housebound and, on the rare occasions I do leave the house, I have to use a wheelchair.

It turned out my symptoms were due to Myalgic encephalomyelitis – also known as ME or ME/CFS. It’s a long-term condition where you feel intensely, impossibly tired all the time. Other symptoms include issues with sleep, brain fog and post-exertional malaise (PEM), where your symptoms get worse after mental or physical activity – all of which I had.

My symptoms first started in 2018, but I didn’t really think anything of them then. I had some fatigue and brain fog, as well as issues with temperature regulation; but I thought I was just a cold person with cold hands and feet.

In 2020, my symptoms ramped up. I’d get constant flu-like symptoms and I was forever paranoid that I had Covid. I’d test all the time, but was always negative. My partner noticed I was weirdly tired, too – I was sleeping way too much.

I went to the doctor repeatedly because of these fluey symptoms and the fatigue. No matter how much I rested, it never felt like I’d slept much at all. I thought I might have an issue with my thyroid; another time, I wondered about low iron levels.

I never guessed the true reason – and neither did my doctors.

I had three blood tests which all came back fine, except they all showed a higher-than-normal white blood cell count; something I now know can be common in people with ME. The doctors would always ask me if I’d felt unwell at the time the blood test was taken, and I’d stare at them, confused.

“Well – yes, I feel unwell all the time,” I’d say, bewildered. “That’s why I’m having the tests done.”

But nothing was ever followed up. Instead, because I had a history of depression, I was told repeatedly that that was the root cause of my symptoms.

Part of me knew it was something more; that’s why I kept going back. But eventually, I was told so many times that depression was the cause that I started to believe it. It didn’t feel like the depression I’d experienced when I was younger; but I was older now, I told myself. Maybe it would feel different.

I started my PhD in 2021, and I struggled to balance it with the fatigue. In October 2022, when my workload increased, I felt really worried. I was doing the equivalent of a full-time job, but I was only just managing to cope. Whenever I wasn’t teaching or doing my research, I was napping.

My partner knew it wasn’t normal and told me to go back to the doctor. ‘But they’re telling me it’s depression, and they’re the ones who are meant to know,’ I replied.

My workload ramped up significantly in March 2023, and that’s when I had to take my leave of absence. By this point, I couldn’t even get myself a glass of water. My partner was doing all the cooking and cleaning and even helping me wash my hair in the bath. But there was no follow-up from my doctors, other than to put me on anti-depressants which – obviously – didn’t work.

It wasn’t until I had a conversation with my godmother in October 2023 that I finally realised what was really going on.

She was driving me home one night and I opened up to her about everything. She’s a nurse, and I felt comfortable telling her why I’d left my PhD.

She started asking probing questions; especially about the temperature regulation, which I’d never really connected with my other symptoms. She suggested I look into ME, so I did – and I realised this, surely, was the answer.

I went back – again – to the doctor’s, and I told them what I’d learned. “Look,” I said, firmly. “I fit all the diagnostic criteria for ME; you can see it in my blood tests and my medical history.”

Straight away, the doctor agreed with me. I couldn’t get a diagnosis until everything else had been ruled out, so I was sent for more tests; but eventually, I was diagnosed and sent to my local ME clinic for support.

I feel very fortunate that my doctor believed me the moment I said I thought I had ME; but it shouldn’t take a patient knowing what’s wrong with them to get a diagnosis.

In June 2024, I got my wheelchair in the hope it would help me leave my house more – because if I tried to leave the house, I’d experience really intense PEM afterwards, which led to periods of being bedbound. The wheelchair helped; but on average, I still only leave the house around once a month; and something as simple as catching a cold will leave me bedbound for weeks.

I know some people with ME have it so much worse; but it’s been incredibly scary sometimes. There have been times when my fatigue has been so severe that I’ve been incapable of eating or speaking.

I try to keep reminding myself how fortunate I am, but it’s been so hard. My PhD came out of nowhere, and it was like a dream come true. Being a lecturer was everything to me – it was so, so rewarding. It felt like a miracle.

In my heart of hearts, I know that if the correct cause of my symptoms had been picked up when I first went to the doctor three years previously, I would have finished my PhD by now. I would have known how to pace myself.

But my symptoms weren’t picked up. And I’ll live with the consequences of that for the rest of my life.

The ME Association (MEA) is a UK charity that launched in 1980 and supports people with ME/CFS and Long Covid. It is committed to working with its members and the ME/CFS community and is focused on improving the quality of life of those affected.

It provides professional support and expert information; funds medical research to establish causes, biomedical markers, and treatments; and educates and informs the broad eco-system of media, politicians, educators, health and social care providers and the commercial sector.