This evolving post is home for any links I find that are useful either for coping with my CFS and Long Covid, or for helping to spread a greater understanding of them to both sufferers and – perhaps more importantly – to the wider world. They are in no particular order currently, with more being added as I find them or post on my Instagram.
Long Story Short
I was diagnosed with Chronic Fatigue Syndrome (CFS) during the pandemic, and can see it has been part of my life for at least 15 years but heavily masked with increasingly strong pain meds from my GP. Being a heavy masking Autistic probably didn’t help either. When I was given the diagnosis I had no idea that it could get worse by my behaviour or if I got further infections. Over the last two years I’ve discovered how much worse things can get, particularly in terms of cognition and verbal fatigue. As such, my life has needed to become much smaller and carefully considered – although, being an artist and having access to my imagination (thankfully) I still can find a lot of epic wonder and joy in my life.
More recently I’ve been off social media (and work/everything!) for 9 months due to a bad flare up of Chronic Fatigue Syndrome (CFS) combined with another bad dose of Covid/Long Covid which has had me largely housebound and often bed bound since Summer 2024.
ME/CFS & Long Covid Links
Oxford University 1st Aug 2024: “New study highlights scale and impact of Long COVID” – spoiler: it’s BIG.
Clinical Care Guide: Managing ME/CFS, Long COVID, and Infection-Associated
Chronic Conditions (IACCs) – published by the Bateman Horne Centre, this is a brilliant resource. “This guide is the product of a dedicated interdisciplinary team of clinicians, educators, researchers, and lived experience experts who share a common mission: to improve care for individuals living with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs).”
MILLIONS MISSING:
Video of a TEDx talk by Maggie Boxey about the MillionsMissing campaign (Content Warning: chronic illness, grief).
Open Medicine Foundation (OMF) are doing more with the campaign on their Instagram @openmedf. They are part of a global non-profit effort to find treatments and a cure for ME/CFS and Long Covid and their site www.OMF.ngo has good info and resources.
Also check out the hashtag #MillionsMissing on Instagram as well.
Resources mentioned in other Instagram posts:
This five minute animation from the Bateman Horne Centre sums up CFS really well. There’s also a low sensory version and pdf transcript.
“It’s not an individual problem, it’s everyone’s”: Matt McGorry shares his experience with Long COVID on The Sick Times site.
“‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal”
George Monbiot, The Guardian 12th March 2024
ME/CFS Scandal Explainer video – from Broken Battery on youtube
Miranda Hart has posted about her Long Covid experience a lot, including this very moving and relatable short explainer posted on X back in May 2020, and this longer version you can watch on Instagram.
Hope some of this helps, and remember: “Rest Is Resistance” (follow The Nap Ministry on Instagram for more of this wisdom!).