2/
“Immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with increased usage of additional substrates to maintain necessary ATP levels.”
"...Hatred has its pleasures. It is therefore often the compensation by which a frightened man reimburses himself for the miseries of Fear. The more he fears, the more he will hate. And Hatred is also a great anodyne for shame."
By David Tuller, DrPH. Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital...
Just like in previous months I have compiled the list of books that I have read during November, and it was less than a dozen books. Check out the penultimate list of the items that I read.
(UK)
Living with M.E. A Photographic Study by Jeremy Jeffs
Would you be willing to participate and share your ME journey?
Photographer Jeremy Jeffs is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E.
2/
For the past 2 years Jeremy, who has M.E. himself, has been travelling around the country photographing people in their homes, with the aim of showing the many ways in which the disease affects people.
Years before I learned of Christine Miserandino’s “Spoon Theory” (https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/), we were staying at the Ronald McDonald House in Providence, RI. They received a donation of flatware from a manufacturer for the House kitchen and offered the old flatware to any of us who could use it. We brought some random pieces home, which we have been using since. In pruning our flatware collection, now that it is just me and my spouse at home, I ran across this Wm Rogers Mfg Co silverplate spoon and cleaned it up. (Note: My spouse thinks that the spoon was around before our stay at the Ronald McDonald House. They are probably correct, but I’m sticking with my memory, since I was never aware of the mystery spoon’s existence before, or I have lost all memory of it. Isn’t confabulation grand?)
Now that I have joined the ranks of the spoonies myself, I figured I needed a physical symbol for my metaphorical spoons, and I’ve decided this is it. I want to share the image with my fellow humans dealing with chronic illness and disability.
Should you find yourself running low on spoons, please feel free to remember that this one is always out there somewhere. I recommend keeping it in mind as a spare and only using it for things that will recharge you: getting yourself to bed, making some food for yourself, and other self-care.
Always keep an extra spoon for self-care, no matter how hectic the day.
Sick talk. One of the most frustrating things with ME/CFS is that I have (brag alert, sorry) so much unrealised potential; and a million ideas for music, planning, writing, reading, programming, design, 3D, carpentry, business, workouts... long list. But even a half-baked synth demo can drain me for a week. Or a year.
I sometimes wish I was a drone with no ideas or qualifications, content with endless daytime tv in a tracksuit. But no, I'd rather die banging my head into the wall.
The ME/CFS Research Roadmap webinars are virtual events open to the public during which ME/CFS experts will present current research, knowledge gaps, and future research opportunities for ME/CFS. Register here. The webinar topics include:...
CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022 (www.cdc.gov)
National Center for Health Statistics: Data from the National Health Interview Survey...
Trial By Error: Column in Time Magazine Calls for Halt to Biomedical Long Covid Research (virology.ws)
By David Tuller, DrPH. Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital...
ME/CFS Research Roadmap Seminar Series - registrations still open (event.roseliassociates.com)
The ME/CFS Research Roadmap webinars are virtual events open to the public during which ME/CFS experts will present current research, knowledge gaps, and future research opportunities for ME/CFS. Register here. The webinar topics include:...