melina

@papillyon @Sabrina_Poirier @sunsopeningband I'm also interested in knowing the source for archiving

@Sabrina_Poirier @sunsopeningband Same question? Who made this?

This one needs *a lot* of caveats.

@ThosVarley @sunsopeningband that's exactly the metaphor I like to use :-)

@sunsopeningband Ah yes, my friend and I were both in the same car accident to so my abdominal bruising is exactly the same as thing as her hairline cervical fracture 🙄

@Comte_Indigo Ne sois pas désolé, c'est courageux d'exprimer ce besoin de communauté. Est-ce que tu sais si c'est un besoin d'avoir des dialogues par écrit avec les gens ? ça je peux faire. Est-ce que tu as plus le besoin d'une entraide entre personnes concernées ? (je peux chercher)

Désolé de dire ça ici, mais je crois que j'ai besoin de communauté. Mes pensées suicidaires, qui commençaient à partir, sont devenues omniprésentes depuis plusieurs semaines. Je ne sais plus qui je suis en dehors de cette oppressante envie de mourir et ça me terrifie

Doctors should not use ChatGPT. Processing bias aside, it's not confidential and violates confidentiality laws.

@M8Void She probably can inhale smoke outside when somebody else is smoking, can she? Or the smell of paint if someone is painting a wall? That's how airborne works.

Dear Covid competent community, can you please tell me about a time you or someone you know was infected while outside in a very small group? My mom thinks it’s impossible… 🙄

@sunsopeningband I hope that makes sense, my English is particularly bad today

@sunsopeningband The LC activists "fighting" ME activism will have a hard time. I used to say: "we have no historical distance on LC + we know ME is underdiagnosed and can be slow onset = it would be reasonable to consider every pwLC at risk for ME" (instead of fighting this silly war).

Our latest work now posted as a pre-print on @researchsquare: "ME/CFS and Long COVID Demonstrate Similar Bioenergetic Impairment and Recovery Failure on Two-Day Cardiopulmonary Exercise Testing" @4Workwell researchsquare.com/article/rs-860…

@sunsopeningband Hi Todd, Thanks for research and explanations! Does that mean that your LC cohort has ME? Does that mean that we should urgently investigate the prevalence of (undiagnosed) ME under pwLC?

Normally you might expect noisy case definitions to wash out any effects, because as we know, Long COVID isn't just one thing. But, at least in our sample, it didn't seem to matter. CPET responses were statistically and functionally similar between ME/CFS and Long COVID anyway.

@_iampaloma Tu veux dire ton cerveau veut pas manger, ou ton cerveau veut pas bouger, tu es trop faible pour bouger ?

TW TCA Jsp si je suis anorexique ou pas parce que techniquement j'aimerais pouvoir manger "normalement" et reprendre quelques kilos, c'est hyper désagréable de vivre la faim au ventre en permanence et d'être clouée au lit par le manque d'énergie juste mon cerveau veut pas quoi 🤷‍♀️

We did, learned, and taught as much as we could. We didn't do, learn, and teach enough. There are still no validated tests and cures for #MECFS and #ME subtypes of other conditions, such as Long Covid, and millions are still suffering as a result. Cure or bust in 2026. Onward.

@tut_tut_tut_tut @elle_carnitine The question remains: how much alcohol, how close to the nose, how often, is the respirator new or at its 7th hour? For me, any risk in decreasing the 95% filtering capacity is a problem. What would be a "still acceptable" efficiency?

@chercheplusou @elle_carnitine I could be wrong but I think that alcohol fumes exposure has to be at least 30 min to the respirator to cause a problem?

Does alcohol in hand gel go through the skin? Is that bad for us (people with ME who can’t tolerate alcohol orally)? what about meds in alcoholic gel form? I’ve been prescribed estrogen gel and I’m a bit worried about the alcohol part

@elle_carnitine Also, it is tested under the assumption of 8 hours exposure a day (as if far-UVC wouldn't be needed at home or in transit or at lunch but only at work). Another topic needing more research!

@elle_carnitine It seems to be a very good method to improve harm reduction, but it also has "holes" and risks. Which depend on the state of the skin and eyes (some people have issues and not enough tears etc.). rfsafe.com/far-uvc-222-nm…

I’ve been looking up far UVC (I know I’m late) and HOLY SHIT why isn’t this everywhere

@elle_carnitine Maybe testing your skin with disinfectant hand gel could help you to assess if you'll tolerate the prescribed gel? (checking the amount of alcohol in both)

@elle_carnitine Can you tolerate the smell of alcohol? I know I react to perfumes and other stuff because of the smell of alcohol. If so, be careful with the gel on the skin. Also, good to know: alcohol vapors such as in disinfectant hand gel reduces the efficiency of FFP2 masks.

@indy_yet @fana2vroumi de ce que j'ai compris des études citées : exposer les personnes à 30 minutes de froid, c'est très limité. Les autres conditions de vie (Passer des journées entières travaillées dans le froid ; passer des semaines dans des logements mal chauffés) ne sont pas étudiées

@fana2vroumi Mouais. Voir cet excellent billet de Florian Gouthière qui reste essentiellement exacte curiologie.fr/blog/2016/11/0…

@indy_yet tout à fait... tout en se ridiculisant en ignorant la fonction antigel de *tous* les radiateurs. Allumer ne veut pas dire "chauffer à 20° C".

Effaré de voir les commentaires misogynes, qui remettent en question la réalité (1.8 vs 18°C), des reproches ("chauffer ça coûte cher", sans blague Sherlock ! "Mets un pull et attends sans te plaindre", "pauvre mari") ou se moquant de l'isolation déficiente. Bien peu d'empathie.

@rhymeswithvery @MECFSNanoneedle Hi! What is it we should watch out for during an ME "recovery"?

@MECFSNanoneedle I'm so sorry--on both accounts, Andrea. I always struggle abt whether to provide this kind of info to people who are relatively new to ME & experiencing improvement, but I'm so grateful to pwME who *gently* explained to me the, erm, dynamism of ME & what to watch out for.

A long time ago, I experienced a semi-remission. I was not fully functioning, but I was deluded that I would keep getting better. When I explained online. I was met with hostility. Most of it was warnings that it would be much worse when I relapsed. They were right. #MECFS