Himmat

I miss: - sitting - standing - walking - showering - talking on the phone - reading - thinking - living #severeME

Everything becomes super dry in a crash, from nostrils to throat. Acetylcholine involvement? A clue about something to target?

ME/CFS defies belief when you try to explain how horrific it is. People simply don’t believe any disease could get this bad, especially one where we still generally look OK. So we’re considered liars or insane & every week another person in the community dies.

Any good company recs for a comprehensive cytokines panel in the EU ? Thanks for the help #MECFS

if anybody can help me pay off $200 of afterpays (mainly groceries) today i would really appreciate it. i already can’t afford my $1k rent due on tuesday. i’m too fatigued to my bones to find a pretty pic to go with this but if you can spare a lil i’d be so grateful, PP below🥲❤️‍🩹

Please share, like, interact with Charlotte's post if you can. France is starting very slowly to talk about ME, we now need medias to cover the more severe cases, and not just when reporting on euthanasia !! #MECFS

@tiredjuul I know this feeling 🫂

I think I have brain damage my personality is changing into a person I don't even recognise and I can't seem to stop it

for those who’ve tried iron supplementation, did your reactions ever go away? tried 11mg of heme iron yesterday and i’m exhausted and having excessive thirst today, feels like a mini crash. wondering if i should try again or if this means it’s a bust

My friend with #LongCovid who isn't on twitter has a question about guanfacine side effects and really needs some advice ⬇️ "for those who tried guanfacine for pots and got sad/depressed as a side effect.. did this side effect go away for you eventually? i’m on day 4 and...

Does anyone have a good source/s on how ME can become more severe from repeated PEM, and what this means in terms of functioning at the severe end? The more scientific/academic the better

People need to understand that infections can worsen pre-existing conditions. It doesn't necessarily mean that you have a completely new illness now.

What are some good resources for somebody who got mecfs and is deteriorating after SSRI withdrawal? They are going downhill, already very severe, a year after a rapid taper. I don't have a lot of energy but I wanted to try and connect this person with some resources as they are fairly terrified and live somewhere without access to the rare professionals who have expertise in this area.

@Naomi_D_Harvey 🫂

F*ck. I’ve overdone it two days in a row, debating what ME is & isn’t on here 😔 I used to enjoy such discussions, they’re how we refine our understanding of things, but I just can’t do it. Whatever ME is, this is part of it, I can’t even discuss things without suffering for it.

Are there people here from China living with ME/CFS? I’m trying to understand the current situation there. Is there any advocacy, research activity (I know of some publications), or public awareness around ME/CFS in China right now? I would really appreciate any insights or firsthand perspectives. 💙🙏

Any microbiome experts here that could tell me whether I should be concerned or not by this score of 0 ? I guess it could explain at least part of why my GI is such a mess ... #MECFS

@elle_carnitine @rhirhiarhii Love you guys 🤍🤍🤍

@rhirhiarhii @himmatb15 We make quite the trio 🔥

Spinal instability worsening is the most fucked up terrifying experience

@KSchnickelfritz 🙏🏼

@himmatb15 And upsets my stomach, but some of that may also be down to the migraine. There are serious side effects to possible if you are at risk of heart issues or stroke so read the leaflet carefully. Doesn’t make my ME worse and does get rid of the migraine.

Are there risks to trying a triptan if you've never done so before?

@kirstler31 😔 did it help migraine at least? (

@himmatb15 Don’t take a full one is my advice. I did the other day out of desperation and the side effects were awful

My father is 67. Today he fed me, but by 1pm he was already exhausted. He woke up crying, saying he can’t take it anymore. “I’m old.” I’m bedridden. Severely ill. And I depend entirely on him. People say “go to a hospital,” but I would be worse there. Strict schedules, lights, noise… it would crash me harder. I already have pressure ulcers because I’m not getting enough movement. This is what severe chronic illness looks like.