The Long Covid Enigma – Lessons Learned From ME/CFS

Every May, we honour ME Awareness Month. Every May, people living with ME/CFS come together to share their lived experiences and use their limited energy to advocate for change. Every May, we try our best to show those outside of the community why they should care about ME/CFS awareness too.

This May, I think it matters more than ever.

Since March 2020, our way of life has changed drastically. This time last year, I wrote about how life in lockdown has given non-disabled people just a tiny glimpse into the true isolation of a condition like ME/CFS – something I hope won’t easily be forgotten as restrictions begin to ease. Now, as the world begins to turn more attention to the Long Covid enigma, it feels absolutely crucial that the lived experiences of people with ME/CFS are a part of that conversation. It’s time, once and for all, for people realise that long-term illnesses really can happen to anybody. Nobody is immune from falling ill from a virus and simply never getting better.

Comfort at home for elderly and less abled

If you’re familiar with my chronic illness story, you may know that my own ME/CFS was likely a result of the post-viral fatigue I experienced as a teenager. My symptom onset was slow initially, and each time I tried to explain the increasingly debilitating fatigue and pain to my childhood GP, the cause of these symptoms was very much placed on myself. They offered every excuse in the book: teenage hormones, stress over exams, iron deficiency… and concluded that the way to bring an end to these things would simply be to up my exercise levels; despite the fact I’d been in vocational ballet training for most of my life up to this point. With every doctor’s visit and every new deterioration in my health, I further internalised the idea that what I was experiencing was my own fault, and it was up to me to fix it.

Knowing what I know now, it’s difficult to think back to this point in time – the more I pushed my broken body, the more broken it became. If I had been better informed about how to manage post-viral fatigue, safely and effectively, it’s questionable whether my health would ever have reached the breaking point which irreversibly changed my life.

Most importantly, though, I’m far from alone in these experiences. Many people, previously healthy and active, have stories that mirror my own.

Many medical professionals are now highlighting the similarities between ME/CFS and Long Covid, and pushing for increased research to test these theories. One of the most-cited causes of ME/CFS is common viral triggers – infections such as glandular fever, viral meningitis, strains of herpes and hepatitis, and so many more can all lead to long-term illness. Because of this, as reported by Action For M.E., “we face the possibility, being raised by our medical advisors, researchers we work with and international experts, of a spike in post-Covid illnesses – including M.E.”

Knowing this, it feels all the more essential that we confront the various failings in post-viral fatigue and ME/CFS management in the past, to better support those who are at the beginning of their journey with Long Covid. It would take a whole other piece to really dive into the stigma, discrimination and medical bias which has defined the narrative of ME/CFS in the UK (as well as around the world), but the bottom line is that in the past, people with ME/CFS have routinely been made to feel responsible for their suffering. Through the lack of reliable scientific research into the origins and management of the condition, many people with ME/CFS have historically been looked down upon by the medical profession… to the point where some have even been made to feel guilty for using daily living aids which help them to manage their condition. So many people have been told their suffering is entirely within their control and nothing to worry about, and therefore been encouraged to push past their baseline; beyond what their body is telling them.

Unsurprisingly, those who have been subjected to this damaging advice have found it to hinder, rather than help, their condition management. The idea of those with Long Covid being subjected to this, at such a critical point in their illness, truly fills me with fear.

This is just one of the reasons why vital conversations about ME/CFS and Long Covid must go hand in hand. It would be very easy to pit one against the other, but ultimately, I believe we must stand united.

I hope that the lived experiences of people with ME/CFS prevent those with Long Covid being subjected to the devastating experiences many of us have had, and I hope the increased spotlight on Long Covid goes some way in demonstrating the seriousness and severity of post-viral illnesses. I hope the long-haulers feel able to ask for help, to embrace any mobility aids which help them to cope, and I hope they know their experiences are valid. Nobody should be made to feel like their disability is their own fault.

I hope that this ME Awareness Month marks the shift many of us have been waiting for – the turning point where the medical profession, media, and general public challenge the assumptions we’ve all made about post-viral illnesses in the past, and learn how to be allies instead. It’s not only time to listen – it’s time to really hear what we have to say.

Changing the narrative on these conditions has been long overdue for many years now, and whilst I wouldn’t have wished the horrors of this pandemic on anybody, I hope that one of very few positives that can be taken away from this period in time is an increased awareness of and empathy towards those who, like me, acquired a virus and simply never bounced back from it. It really can happen to anybody.

You can learn more about ME/CFS by visiting Action For ME and Millions Missing, and find easy ways to show your support on my blog. You may also be interested in this account of my experiences of post-viral fatigue. Thanks for reading!

Pippa Stacey