Hey, thanks for taking the time to reply. I read your post. Sorry it's not doing anything for you yet 😔. I got the Cefaly (for migraine) but don't think it's appropriate for me. I really hope you start to get some relief from the Flow 🫂
Ahh yes, found some. Didn't think of searching for Fibromyalgia. Thanks 👍
Looking for real stories about GLP-1 use in Long COVID.
From microdoses to full doses.
If you've tried it (good or bad), slide into my DMs or drop a comment here.
Been trying to avoid joining anything else but Reddit does seem really useful. Thanks again 😊🫵✌️
Ahh, didn't realize I could search subreddits without being a member. There is indeed a ton of info there. Thanks!
Hello. A question for pw #LongCovid #MECFS taking low-dose Abilify / aripiprazole (LDA): if you had any negative effects from taking it, were they (quickly) reversible after stopping treatment and could you return to baseline? Also, any dosage recommendations? Thanks
Oh, forgot to say thank you for the wishes ☺️.
We're lucky to have such dedicated researchers trying to fix this crap for us, but it's still so slow and needs moooooooore 💴💵💶💷
No need for apologies: we know how it is with energy. I've become terrible at messaging. LDN made my brain worse but I'm glad it worked for you! Treatment is a lottery. I've yet to find something that really moves the needle. Hang onto your spoons, looking forward to reading more good updates! ✊💪😊✨
Plus near constant unpleasant brain sensations and facial pain (new symptom after brain crash a year ago: woo 🥳😄).
Really glad you've improved enough to study again. You were really not doing well for some time 😔. Do you think you're still slowly improving?
Stuck on FUNCAP23 of around 4.5 with occasional dips lower for a month or so after crashes. I can potter around the house and go for a 20-min walk. Brain is still pretty bad though: can't read much or complex stuff, can only tolerate video or music for a very short time, sometimes not at all...
Heylo! Yeh, I kinda went off social media. I had a massive brain crash a year ago with very severe sensory sensitivity. I couldn't use screens for a while and then got out of the habit of social media. Plus was finding it a bit depressing. I'd say I'm pretty much the same for a few years now...
That's great news, Sarah 🙌. I remember reading your posts from early in your illness - glad you're well enough to be able to return to study. I wish you the best of luck with it 💪🍀
Hat jemand Erfahrung damit? #MCAS #LongCovid
And there are plenty of people in far worse shape who would like to have my level of (in)activity 😔
I hope those other non-cardio exercises are of benefit to you anyway.
I can do about 4500 steps a day now when not crashed. Had been doing maybe 6000 in the year before crashing.
Oh I wouldn't be able to do any gym classes! I was able to do some very mild strength training at home in December but overdid it and wrecked my thighs. Since then, I can walk less.
Thanks Rose. Going to try PR Lotion and a magnesium muscle spray. Hope you're managing the ME as well as possible 💪🍀
Has anyone with #LongCovid #MECFS got recommendations specifically for muscle pain/weakness/stiffness in PEM? Currently taking Mg, taurine, glycine, creatine (20g), ALA, CoQ10, dichloroacetate, quercetin, l-glutathione, NAC, B1, B2, C, D3, PureGenomics UltraMultivitamin. Thanks
Hi there. Is this only for people in the US?
Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn?
PT, PRP injections, etc all very welcome. #LongCovid #mespine
I am curious to know if any #pwME or #LongCOVID have tried whole-body red-light therapy, and found it helpful for symptoms? There's a place near me that does it relatively affordably (for sports recovery/beauty) but I have been thinking about giving it a go? #MECFS
Hi. Is this only open to people living in the UK?
Thrilled to share that the Cambridge Global Handbook of Financial Infrastructure, co-edited with Malcolm Campbell-Verduyn and Barbara Brandl, has been published!
You can find all chapters open access: doi.org/10.1017/9781...
We’re recruiting a fixed term (3 years) researcher in clinical exercise science and Long COVID. If you want to join a team that is at the forefront of the pathophysiology/lived experience research then please get in touch.
Please share with your network!
www.derby.ac.uk/jobs/current...
Sorry to read all this 😔. I hope this latest chapter in the neverending saga of medical shiteness passes quickly and as painlessly as possible. Miaow✌️
A few links below on involving patients in research, in case they're of use. Cheers
* mh.bmj.com/content/51/1...
* www.nature.com/articles/s41...
* researchinvolvement.biomedcentral.com/articles/10....
* normalness.com/2023/12/15/t...
Ah, pity.
A 60-min video interview in one go may be too much for some patients (I couldn't do it without symptom exacerbation) and so might limit your pool of respondents. Apologies for that unsolicited advice, especially if you've already considered that. Good luck with the study!
Have you tried rapamycin for #longcovid or #mecfs? I'm writing a story for The Sick Times. Get in touch Felicity.nelson@frogsandstars.com
Hi. Is your study only open to people in the US? Thanks