Amanda Crist

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.

@PneumaNeura @Yrrepmot Wow that's a really creative way to go about it!

After 2 years of relentlessly attempting to break through to get AI to spit out just ONE intervention that I didn't already know for ME/CFS & LC- asking it to pretend it's a Russian/Japanese/Bulgarian/Serbian, etc physician,I finally had a breakthrough with trying Claude, & it introduced me to a half a dozen Russian immunological therapeutics that I didn't know about! My wishful thinking is hopefully as my body slowly gets stronger in 6 mos-1 year, I try to a combo of Russian interferons & immune modulators Some of the onesI learned about today are: 1) Polyoxidonium (Azoximer Bromide)- really excited about! 🥳 description below 2) (homeopathic interferons!) Anaferon and Ergoferon 3) Lavomax / Tilorone (Amixin) 4) Galavit And on my mind to try are Viferon suppositories and cyloferon/interferon injections. These I imagine are less potent than immunological treatments in Western treatment trials for cancer, etc..but thus far very affordable and relatively accessible. A list of Russian product pharmacies here, thanks to ME veteran HIP forums.phoenixrising.me/threads/list-o… This pharmacy has a whole section of immune modulators with a description under each med eg ru-pills.com/product/polyox… And thanks again to HIP- there is this paper that surveys some of these medicines pubmed.ncbi.nlm.nih.gov/19355963/

Very striking data showing changes in disease patterns post-pandemic data.mcmillanresearch.com/public/. Those who follow #TeamClots will understand why.

@TweetingTimo @PhillyPhile215 So glad you're doing better!

Heute ist ein großer Tag für mich. Nach ca. 4,5 Jahren mit teils schwerem ME/CFS und Erwerbsunfähigkeit nach meiner COVID-Infektion ist heute mein erster Arbeitstag. Ich bin nervös, dankbar und ein bisschen überwältigt. Wünscht mir Glück 🍀! PS: Kein Aprilscherz.

@liamsLCjourney @PhillyPhile215 100%! I feel like we have more resources now than we did in 2023 when I got on here, but a lot more is needed

@ZebraLoveCo @PhillyPhile215 Yes! I absolutely abhor any sort of generalized advice. We simply don't have enough energy to read the same truisms over and over. All advice about Long COVID / ME should be maximally specific and unique!

Excited to present the Severe PEM Crash Survival Guide! liamrosen.com/pemcrash At the beginning of the year, I plummeted into an extended bedbound PEM crash for the first time. Mentally and logistically unprepared for how to navigate such a severe situation, this lack of knowledge caused me to crash six additional times, sinking me down into a nightmare state that I hope never to return to. While at my worst, I vowed to write a compendium of advice so that no one would have to face this experience like I did. Lying still in bed with an eye mask on, I mentally edited this guide every day, adding new things I learned along the way, and now that I can finally use a laptop a bit, I've been able to painstakingly write it up over several weeks! I found existing guides on surviving PEM bloated, hard to read, and clearly written by clinicians who have never actually been in one. That's why the Severe PEM Crash Survival Guide is specifically formatted with large text, soft contrast, and contains ONLY practical advice written by someone who's actually been through it, with no fluff - not a single word is wasted. If you enjoyed the guide, please bookmark it and pass it along as a resource so no one has to go through their first (or next) crash alone. P.S. Writing this was a community effort - thanks to everyone who provided suggestions along the way. And if you have any other edits or fixes, this is a living document, so please leave a comment!

Great guide!

@liamsLCjourney Yes! It's basically the most complicated thing on earth

You know in police procedurals when they show the "conspiracy board"? Trying to solve this condition, I feel like I'm standing in front of my own, all day, with paper pinned up everywhere, pieces of string connecting all my different biomarkers back to research papers, then to different parts of my body, pacing back and forth furiously with my eyes shut, thinking as hard as I can with a somewhat-functional brain. And then the camera slowly zooms out, and in a homage to Raiders of the Lost Ark, you see that there isn't just one board, but a whole warehouse full of them, all with different biomarkers and different organ systems which I haven't even started on yet. As the camera continues to zoom out, left side of the screen partially dissolves to a giant anthropomorphic spike protein, laughing menacingly, like "you're never going to solve this, you FOOL." Fade to black.

@ecrobinson34 Thanks it went really well! I was able to wipe down the kitchen even myself which I haven’t been able to do too much until recently.

@ZebraLoveCo This is great! How did it go today?

First day by myself without a caregiver since 2020—we'll see how it goes. I set everything up so I can reach it from the wheelchair, and items are in the fridge to heat up. Checklist of 30 things is set up for when I lay back down too in the afternoon!

@GeneticLifehack I can definitely check, I have done a full genome sequence and I didn't see anything like that. Good to know about it though!

@ZebraLoveCo That's great! I'm curious if you've ever checked to see if you have a MEFV mutation. MEFV mutations can cause familial Mediterranean fever, an autoinflammatory condition treated with colchicine. The autoinflammatory part causes elevated IL-1B and IL-18. geneticlifehacks.com/familial-medit…

Update: on colchicene since Feb 17 and tirzepatide since February 28. Tuesday I lifted my camera to take a video and then kept lifting it again for over an hour. A heavy old DSLR. I was able to put it on a tripod. This is from someone who couldn't brush my teeth in 2020. 👀

@AndrewG76201347 Ok checked the dose and it's 0.1 mL injectable

@AndrewG76201347 Oh that's good to know–I'm not sure what the reason is for me. 🤔 Before this med I was on Pioglitazone which also helped me a lot but caused immediate weight gain. I went off it for this one and kept gaining even more weight. I also ordered my favorite Indian food a few times :)

@makemevisible24 I hadn't really thought about it because it was not my main issue, but I think I've actually been able to watch some more TV with sound so that might be something

@ZebraLoveCo Any cognitive benefits?

@Lorant661 Dose for it is 0.1 ml injectable

@Lorant661 I do have gut issues although muscle issues (most likely caused by vascular and neutrophil) are my main problem. When I get up here in a little bit I'll check the dose for you!

@PatrickjaLee Sure!

@ZebraLoveCo Thank you, really helpful!

Colchicene trial update: I've been on this medication for about 18 days now— I lifted my camera after 7 years of not being able to. It's hard to know whether it was just this medication or if it was a gradual buildup of strength which I also have been doing.

@blinkyblueeyed Sure absolutely!

@ZebraLoveCo Thanks for the answer 🙂 I have a feeling I had an MPO test done at some point but probably only the antibody (initial thoughts were autoimmunity). I‘ll go back and check this though - so thank you for the tip! 👍

@PatrickjaLee Also it's important to know that one of the reasons I started taking it is because I had an MPO of 5300, which is 10 times normal and represents neutrophil activation. Colchicene directly acts on neutrophils

@PatrickjaLee Sure! main symptoms have been similar since 2017 — I started having back cramping/weakness and then it gradually progressed to my hips, then my other leg muscles, and my mid back. Hands are largely unaffected. What I'm finding though is it's probably not muscular, it's vascular

@PatrickjaLee I think it was really slow almost like I didn't notice it at first, but then I was just doing things that I hadn't done before and I was recovering. I'd be really curious to hear how it goes for you

@ZebraLoveCo I've literally just collected some colchicine for LC, so very glad to see this! Have you being getting incrementally better day by day or did it take around 2 weeks to start having an effect?

@anenigma420 Thank you!!💛✨

@ZebraLoveCo Hoping today goes well for you Amanda ❤️🙏

@NZ_fund_MECFS Thank you 🫂🧡 I really hope it lasts at least for a while!

@ZebraLoveCo Rooting for you Amanda