How patient-led research could speed up medical innovation, with examples from long covid and ME/CFS, including Solve M.E., PLRC, and MEAction
Of course they mention the speed of patient-led research, but I also love to see the recognition that patients help design better experiments and especially better controls. It’s hard to control for dynamic conditions and lack of diagnostic lab tests, but patients have expertise.
Last thing I want to make sure to share for #LongCovidAwarenessDay is this podcast interview with Emily Dupree, the absolute legend / regular person who founded Clean Air Club and inspired dozens of similar lending library projects, providing free air filters and far-uvc lights for arts events. Her clarity about clean air and mask requirements as access issues is 👌🏻
The long covid resource I have shared with the most people irl might be surprising… It’s how to stop a chronic dry cough (PDF).
I think we’re finally done with the mistaken idea that long covid is just a lingering cough. But also, often people have a lingering cough! And it can be rough– i have had PEM as a result of coughing.
So I’m sharing the method I got from my respiratory physiotherapist– of course talk to a doc first.
Shout out to Jennifer Brea, co-founder of MEAction, who started raising awareness of long covid on March 14, 2020.
This is one of the data points that convinced me disability activists can see the past and present so clearly it counts as seeing the future.
I’m forever grateful to MEAction for their Stop Rest Pace campaign that started early in the pandemic. It’s the reason I stopped trying to push through my fatigue, and realized I might have long covid. Their resources on recognizing PEM and learning to pace are honestly worth a read for everyone during these times.
And the guide they made for doctors in collab with the Mayo clinic is so smart.
A book that helped me adjust to long covid life is How To Be Sick, by Toni Bernhard, who is a Buddhist with ME/CFS. It’s not a “heal yourself with meditation” book, it is a “techniques for handling suffering” book.
I had heard sick and disabled people say everyone who receives a life-changing diagnosis should be provided a doula or guide for the transition, and this book served a little bit of that for me. Passing it on.
It’s heartening to see more people talking about the ever-growing long covid disaster, and also it has been getting hard to endure all the awareness raising that aims to scare people as much as possible by using my health conditions as an example.
It’s important, keep it up! But for #LongCovidAwarenessDay I want to lift up things that have made long covid easier for me to bear. Sending so much love today to fellow long haulers and to all the spoonies, especially people with ME ❤️
My favourite fedi thing might be seeing all the domains people have registered for their servers. It’s been ages since I encountered this many urls with actual human flair. Sincerely welling up about jorts.horse and butts.team
I’m posting these little camas babies for #MillionsMissingFlowers , a monthly chance to talk about ME/CFS.
This month I am thinking about how long it takes to get an ME diagnosis, 5+ years or more on average. ME is already listed as a common (5%+) outcome of covid infections, and we’re just finishing year four. I wonder how many people will realize this year that they got ME from covid in 2020. I wonder about Omicron in 2022.
Sources:
I really appreciated Bea in this episode of Death Panel, talking about the process of self-diagnosing before deciding to see a doctor.
She spent a year thinking she was just reading too much, before realizing she was going blind. Different conditions, but that’s so familiar to me– I spent a year thinking I was just sleep deprived or stressed before realizing I had cognitive and energy impairments.
Today’s small pleasure is waking up on February 29th and realizing I am not currently responsible for any legacy software systems ✨
FirstVoices had a 20th anniversary event last week and I learned something that melted my mind a bit. Dave Elliott invented the writing system for the SENĆOŦEN language on a typewriter. (This typewriter!)
Creating new symbols for the sounds he needed by backspacing and combining marks on top of letters. It’s so smart and simple! I keep thinking about it.