Does anyone else find that vagus nerve stimulation activities/exercises (chanting, humming, meditation, soothing music, cold water, etc.) is counterproductive and can dysregulate your nervous system? @mecfs
This is interesting and I'd love to hear more re yours & others' experiences. Slightly counter intuitive! I'm def not qualified to know why.
I've recently begun using a vagus nerve stimulation device (the 'sensate 2') as it calms me (same as humming). It helps me wind down after work/stimulation & before bed. I'm 15+ years' ME/CFS, an imbalanced immune system, poorly mitochondria.
I combine my device usage with breathwork exercises; this combo works well for me.
@Mordantivore
The entire issue of fedi groups is very up in the air right now. Supposedly Mastodon is incorporating group functionality in some way; and there are new services under development, like Bonfire, which is particularly oriented towards them. IOW there's a good chance of better ideas on groups emerging soon
Give your loved ones, friends, mutuals, followers, neighbors, acquaintances, strangers and yourself the gift of a healthier holiday season and beyond by sharing this list of NIOSH-Approved N95 mask brands and models.
A lot of masks sold or even given away are fakes — and while any mask is better than none, it’s your health on the line. Covid is surging, and even the mildest case with no symptoms can leave you w #LongCOVID
"True #longCOVID, many experts say, is best defined as a #chronicfatiguesyndrome–like condition that develops after a COVID infection, similar to other post-viral syndromes that can occur after an infection with herpes, Lyme disease, & Ebola, among others"
Emma, a 9 year old created a drawing she captioned "ME is like a butterfly chained to a stone" (in Norwegian). Her drawing became famous after Invest in ME shared it in 2018.
Today (May 31) is her 16th birthday, and she has had ME for over 10 years.
Anyone got experience with doing physiotherapy for issues they have while also having ME/CFS? (I guess long covid can apply).
I don't mean physiotherapy for ME, I know the fucking pace stuff is bollocks, obviously.
But often with physiotherapy you need to keep building up your ability and strength, and I'm worried about how to balance it with not being supposed to go over certain levels of exertion!
@maloki yes, with some success. It's important to have a physiotherapist who has a basic understanding of what ME is, and isn't expecting to push/"motivate" you.
The article says, "Historically … doctors have trivialized ME/CFS or denied that it is a real condition and dismissed patients as having anxiety."
I would add that gaslighting of ME/CFS and Long Covid patients by doctors is not something that used to happen. It is still happening today. Perhaps it's less widespread than 20-30 years ago but it's still there.
@longcovid@mecfs@ahimsa_pdx
This is the conversation I’ve had with my Doctor.
Me: “I was a runner, but now if I try a short distance it takes me weeks to recover. Can you help?”
Doctor: “Have you tried exercise?”
Me: :blobfacepalm:
And with mecfs there seems to be a higher risk for worsening problems after catching Covid :(
So even if "only mildly" sick with mecfs there is the "I cannot/don't want to get sicker than I am now already" kind of lockdown: Even if you could go outside seeing people, you just don't if you want to avoid getting Covid.
😓🫂
I’m planning to go to this (in Dublin), but just the chat part!*
I’ve organised lots of meetings but this will be the first one I’ve ever attended!
Hope to see some of you there: do come over and say hello if you feel inclined.
*There’s no way I could survive the whole thing. Though I suppose if I was less busy, I could go to some of it, rest somewhere like a car, and come back
May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long. https://www.youtube.com/watch?v=TGIo1v7KVJQ
This film will give you an introduction to PEM (Post Exertional Malaise).
Once you've understood what PEM is about, you'll know a lot more about the debilitating chronic disease ME (Myalgic Encephalomyelitis).
"Join the UK and Scotland’s digital campaign this Millions Missing"
"We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?"
Parent or teacher interested in a Covid safe school?! Centered in disability justice. One is forming in MA/RI, location TBD. Email for more info or with questions!
