Royal College of Nursing: From Chronic Fatigue Syndrome to Long Covid

October 25, 2021


“Senior nurse Michelle was already suffering from chronic fatigue when the COVID-19 pandemic struck. After she caught the virus, chronic fatigue services helped her manage some ongoing symptoms, but accessing specialist long COVID support hasn’t been as easy. Michelle tells us her story.”

RCN Magazines

Please note:

The ME Association does not recommend or endorse any kind of gym-based rehabilitative programme for ME/CFS or Long Covid. Hydrotherapy might be helpful to some if symptoms have stabilised, illness severity has improved, and they are able to do it safely under the supervision of a healthcare professional who knows them.

Extracts

Not long before the pandemic, in late 2019, I fell ill with a flu-like virus. I’d always been very fit and active – I ran three times a week and was training for a half marathon. I was always on the go, often out meeting friends, and when I was at home I’d be busy with gardening or DIY.

But I struggled to recover from this virus. I was later diagnosed with chronic fatigue syndrome and it took me seven months to return to work. 

In December 2020, I tested positive for COVID. After about five days, chest pains began and by day 10 it felt like there was a huge weight on my chest and I struggled to lie down.

Luckily, I’d been on a waiting list to access a chronic fatigue service and my first appointment came post-COVID. They explained how I could pace myself, the importance of sleep, and suggested trying a gluten-free diet. They also explained that my symptoms were not a flare-up of chronic fatigue, but that I had long COVID alongside my existing chronic fatigue. This has been confirmed by my GP and the Occupational Health doctor.

My long COVID has been unpredictable. My symptoms are different each day. I pinned my hopes on the long COVID clinic. But I was severely disappointed. I felt they were only interested in breathlessness and fatigue. I was hoping for referrals for chest pain and other symptoms, but was told this was my GP’s responsibility. I was told I would need an extended phased return to work. When I asked for letter for occupational health, but they could not provide this.

Senior Nurse, Michelle
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