Story of a patient leading into a general overview of research by Systrom, Oaklander, Elzakker, Montoya and Younger. Protomag appears to be an online magazine of Massachusetts General Hospital. Full story here: http://protomag.com/articles/energy-crisis-0
Thank you @Ravn for this article. Maybe I missed David Systrom's study of pwME funded via Solve ME/CFS. I've looked for it, but couldn't locate it. Is the phase 3 trial referred to THE trial in question, or is there another one. I thought the meaning of a "phase" trial is drug treatment/testing. Do you know if Dr. Systrom's study of pwME funded by the Solve ME/CFS Initiative has been published? Thank you in advance! ETA: My understanding was, this study was not a drug trial.
This might provide some answers, https://www.s4me.info/threads/dr-david-m-systrom-at-bwh-has-evidence-of-sfpn-in-some-patients.4855/
This is a good article. Nothing we didn't already know but a good summary of where some current research efforts are heading.
Cats sleep nearly 20h a day. You need to be nearly entirely bedbound and immobile to get to a level that qualifies as genuine deconditioning. Only 25% of ME patients even qualify as housebound or worse. The hypothesis was always flawed based on what we know of the disease. Even PACE literally included the fact that participants were reasonably active, which they did only to justify dropping off actimetry, but nevertheless it's there in plain language. This never stopped them from arguing it and for people who should know better to accept such a dishonest argument as valid, let alone convincing. There are otherwise perfectly healthy people who are less active than I am, which they do entirely by choice. It's completely ridiculous that such an obviously broken argument can still be argued. The suspension of disbelief is literally killing people.
A physician told me that my walking about 30 minutes per day (which I try to do as often as I can) is a lot more than a lot of people do. If the deconditioning theory held, others who do way less activity than me should have ME, and I shouldn't!