Young athlete: from very severe ME/CFS to full recovery

Our blog this month comes from Jay, who recovered from ME/CFS using the neuroplastic/mind-body approach. This blog is a ~3min read. The full, in-depth story with a preface is on Jay’s website.

This story starts when I was 21, studying Maths and Computer Science at a top university, whilst competing internationally for the English Freestyle Ski Team. After an intense period of study and training, at a competition, I caught Covid.

Month 1-2: I had mild viral symptoms; fatigue, nose block, swollen glands, sore throat, loss of appetite, sore muscles, sweating and chills. I tried to cope with debilitating fatigue; I was so used to pushing myself but now that seemed to make symptoms worse. I felt miniscule improvements but my “body battery” never really went above ~35%.

Month 2-4: I tried to go abroad to ski and compete but ended up spending most of that time in bed resting after overexerting myself. During the trip, my best friend sustained a life-threatening, life-changing ski accident. I was pretty traumatised by this. I then had to try to study and take my university exams. I developed a “boom and bust” cycle of post exertional maliaise (PEM), with my baseline getting lower with each episode. I ended up suspending my studies; my parents picked me up from university as I was too ill to continue.

Month 4+: Despite a good home recovery environment, I still repeatedly developed PEM from tiny exertions (walking from my bed to the dinner table), with my baseline declining each time. Soon, I ended up very severe ME/CFS: ~97% bedbound, needing my parents to wheelchair me from my bed to my toilet, struggling to shower and unable to speak or tolerate any human presence, light, sound or input on the worse days.

The NHS Long Covid Clinic guidance was to “pace” my activity - and introduce lots of rest and meditation. Some sensitivities faded with this advice, but the physical/mental fatigue and PEM never got any better. Things remained like this for 8 months.

Jay wheelchair bound in the thick of his chronic symptoms

Turning Point: A major turning point came when my dad connected with a long covid recoveree, Gary. He had recovered from years of severe long covid using neuroplastic/mind-body work. Our supportive doctor (a senior NHS GP), my uncle (a senior NHS consultant), the NHS long covid team and my mum and sister, all fully supported what Gary explained to me about mind-body medicine.

I listened over the phone as Gary calmly explained that my nervous system had become dysregulated and I was stuck in ‘fight or flight’. He explained that there can be physiological changes in the body, but that this was from my subconscious misinterpreting signals as a threat and using biological protective systems (fatigue and PEM) to protect me from perceived danger.

Gary advised that whenever I felt my symptoms, to not react out of a place of fear, of pushing too far into a crash, but instead, to calmly and kindly say to myself, “Everything is OK. Thank you brain for your concern but my body is fine and you can relax. You don’t have to protect me so much now”.

Initially, I thought that maybe some people might have a mind-body condition, but not me: my condition was real, mine was in my body. These two things are not mutually exclusive (mind-body conditions are very very real with often severe physical symptoms in the body) but I was naive to this initially.

Seemingly miraculously, I had a complete cognitive remission after two weeks of these repeated messages of safety to my unconscious, understanding the science and a borrowed belief from my support network that this approach was going to work for me.

I now had evidence in my body that this approach could work so I started to try to slowly increase my physical activity (I was still bedbound at this point). It took time to replace the strong fear of not pacing, over exerting and crashing with neutrality and even curiosity towards symptoms. I did not attempt to ignore symptoms or pretend they didn't exist but I acknowledged them with no judgement.

An important part of the recovery process is the emotional side. Gary explained to me that subconscious, repressed emotions could drive and keep the brain in ‘fight or flight’. Big, repressed emotions of fear, anger, guilt, shame and others can build up in the body over time. If they are not allowed to arise and be safely acknowledged and processed, they can spill over and express as physical symptoms.

A deceivingly simply tool to help alleviate my chronic condition was Nicole Sach’s JournalSpeak practice. I did this journalling practice daily for several months, along with the messages of safety and listening to other recovery stories. Throughout this time, symptoms/sensations faded and I was able to increase my physical activity without PEM and return to full health.

I now have been fully recovered for over 6 months. I work full time and have been able to return to an international level of freestyle skiing again.

Jay back to competitive sport following recovery :)