When Dr. Kane first visited in July 2023, I was in a very bad way: bedbound for eight months in a pitch-black, silent room with very severe ME/CFS, struggling to speak or feed myself. It was clear that no-one within the NHS knew what to do, and my care was mainly left to my parents, so we were immensely relieved to have found a doctor willing to take charge when no-one else would. After she left, I remember my dad coming up and saying, “I feel quite hopeful about her.” It was the first time I’d heard him sound optimistic in months.
Under her supervision, we tried various treatments, introduced slowly. In the following weeks, I began to make tiny, gradual gains like feeding myself and whispering for a few minutes at a time. This made my condition more bearable and convinced me that it was possible to keep improving. I continued to see Dr. Kane every few months and found her empathetic, understanding and willing to answer any questions, which I mainly communicated through scribbles on a notepad.
There were bumps in the road, but in the following year my overall trajectory was upwards. Four months after Dr. Kane visited, I stood up and walked a few steps for the first time in over a year. In the following months, and supported by carers who visited me at home, I began taking short walks outside my bedroom, showering using a purpose-built chair, switching my eye mask for sunglasses and removing my ear defenders for short periods. After eight months, I could go downstairs for fifteen minutes every day and have a cup of tea and a chat with one of my carers. My steady progress continued until I no longer needed sunglasses or ear protection. I remember the joy of sitting up in bed and watching the Harry Potter films back-to-back.
The more I improved, the easier it became to manage my ongoing recovery. Under the advice of Robin McNelis, I used ‘micro-pacing’ to refine my approach to rehab, which involved very gently increasing my activities as and when it felt manageable.
As I write this in April 2025, I am so much better than I was. I can write, see friends, and I even took a trip away with my parents last week. Although I still have significant limitations, after being so ill for so long I am filled with gratitude for everything I can do, and Dr. Kane’s help was critical in getting me here. My improvement continues, and I believe I will one day recover fully. In the future, I hope to return to playing football and write a novel, along with doing all I can to help others with ME/CFS and similar conditions.
A Call to Action from Dr Kane
I remember climbing up into the dark attic where Nick was living with a torch, wondering how someone had managed to live like this, unable to leave his bed or tolerate any stimulation for 8 months. Nick’s recovery has been remarkable and gives hope that recovery is possible with the right help and support. We were lucky that Nick responded to various off-label therapies, but we desperately need the research to help us understand how and why patients respond to different treatments. This disease is so heterogenous that there is no ‘one shoe fits all’ approach. Clinicians like me continue to do our best, but without any clear diagnostics or biomarkers to guide us, it remains challenging for everyone.
Together we can drive change, but we need your support. If you can, please help raise awareness by supporting the #ThereForME campaign (https://www.thereforme.uk/) and our partner Charities Long COVID Kids https://www.longcovidkids.org/ and Long COVID Support https://www.longcovid.org/
You can donate to our research programme led by Prof Mark Faghy.