My best top 20 tips for walking again.
I've done it twice and now a third.
Shoes—make sure you can move your big toe up and press it down as this signals the entire walking chain up through the adductor magnus, pelvic floor, and then abdominals and glutes.
@makemevisible24 Basically most of my symptoms are muscular –I was able to for example lift my camera and I hadn't lifted it in seven years. I can do multiple photo shoots like two days in a row and not have PEM or very little.
So I'm feeling better on treatments and I'm trying to fit in with normal people and I'm not so certain I can do it…
I'm trying to start a company to raise money but it's like when you're coming from a place of severe ME/CFS, and all the things that go with that…
@Margare91095496@makemevisible24 Wow that's so great to hear that she's improving –I hadn't heard of the beetroot shot before…sounds like we're on some similar treatments. With the Amlexanox I had a major improvement within a week where I started walking- I hadn't walked any steps forward at all in two years
@ComebackGrid Wow I love that thank you so much for sharing your story –I think there are whole number of us that really need support from each other! And I think you're right about normal people also, people are pushing too hard really, and I'm guilty of that even when I was healthy!
@makemevisible24 Two of the most recent ones are colchicene and Tirzepatide. Very life-changing!! I'm also on amlexanox, sulodexide, and LDN. All of these have made a huge difference and I have a number of supplements also
@liamsLCjourney Yes it's really something—I wouldn't trade my health but I also don’t feel like I belong with healthy people . . . so it’s very lonely i think
@WIRED Oh please stop, I tried all the brain retraining for years but as soon as I had the right medication I started doing better—I went from not being able to feed myself to running a company.
Good grief.
@hannahspierMD Oh no I didn't realize people like you were still saying things like this. Probably because I'm living my life and not paying attention- I got treatments that actually worked. Before that I would've had what you call an illness narrative, because the hospital didn't treat me!!
Online version of a new paper with @resiapretorius Pretorius, E., Venter, C., Nunes, J. M., Thierry, A. R. and Kell, D. B. (2025) Surface cues shape procoagulant properties of amyloidogenic microclots. Cell Death Dis, online.
https://t.co/uCiJ8WSEpl #TeamClots#pwLC#pwME