I have Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (or ME/CFS, and then I got long covid in March 2020. Long covid (of the nervous system type) is being described as mirroring the way which ME/CFS is medically and socially disbelieved, mirroring the way in which ME/CFS have always been excluded from the medical system, mirroring the trauma of having to always defend how you feel, as if the weirdness of these central nervous diseases was somehow always your personal failure. This is a blog about how it is to deal with long covid and ME socially and medically.

 


Don’t go quietly. Take space and demand to be seen. – 20TH SEPTEMBER 2022

This post follows on from my last and continues the themes about battling for a diagnosis, medical gaslighting concerning to ME, long-covid and related neurological conditions. However this post focuses more on the fragility of hope and what battling the medical industrial complex means as a feminist and crip work. […] Read More

 


Battling for Diagnosis.  – 20TH SEPTEMBER 2022

I am now 2.5 years into long-covid, and I’m sorry that I haven’t written a blog post in really long time. I haven’t felt like recounting what’s been happening in this public form until now. This is the first of two posts coming […] Read More

 


(Not) knowing long-covid fatigue. – 11TH NOVEMBER 2020

Long covid news of the day: The people who end up with long covid (as many as 1 in 5 covid cases do), are not the same as those vulnerable to severe, acute covid. The majority of long covid sufferers are under 45, and describe themselves as ‘youngish, fit, and healthy’. There are currently 3 […] Read More

 


A central nervous system shaken (not stirred) into timesoup.  – 23RD OCTOBER 2020

This blog is in timesoup. I can’t write straight forwardly about long covid like a diary would be, because the experience of long covid itself is not a linear or sequential matter. There is also a need to use what’s newly discovered about long covid to look back and understand what happened. I’m tackling a […] Read more