I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me

In March 2020 the scientist of the ME community predicted that Covid-19 would cause ME, a lifelong post-viral fatiguing illness, in a portion of those who recovered from infection. They estimated roughly 5-10%, based on SARS1, would struggle to return to pre-infection energy levels, and that many of these would never recover. It didn't take …

Why would you willingly risk becoming like me?

I'm so baffled by vaccine reluctance, especially in populations old enough to remember polio. Covid causes long term damage and disability in a devastatingly high proportion of the infected. Severe-acute-respiratory-syndrome-Coronavirus-disease-2019, aka SARS-COV-2, AKA Covid-19 attacks the organs, blood vessels, and nerves. It's not just a respiratory infection, it's a systemic disease. We are seeing data …

Covid-19 update

I haven't posted in a while. It's been a weird couple of months, and I just haven't had the brain space to form a coherent sentence. I'm not sure I have a coherent post to write today, but I want to address a couple of things - covid and ME/CFS (triggers, the future, and my …

August 8 – International Severe ME day and my ME heroes

I'm fortunate enough that my ME is currently only in the 'Moderate' range, meaning I can stand up on my own most of the time. I do sometimes use a walking aide/wheelchair as a way to manage my energy levels and prevent further deterioration, but I can usually stand and walk without assistance. I have …

Spoon theory vs Energy Bucks

I have read many descriptions and metaphors to describe what it's like to live with an energy sapping chronic illness, but I find that none adequately describes what it’s like for me, living with ME/CFS. I have a metaphor that I think fits me and my ME which I wrote about in my epic post of …

Today was a good day, so why am I crying? AKA Show me the money!

Ok, I'm pretty tired, having reached my step limit today, but it's more than that...it's the millions missing, including myself, and our invisibility in the world of medical research. It all comes back to Florence Nightingale. For a few weeks the mere mention of Nightingale's name has been enough to set me off. Last week …