melina

chronically ill | #autodefensesanitaire

[melina @chercheplusou]

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

[melina @chercheplusou]

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

[melina @chercheplusou]

@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)

[Todd Davenport @sunsopeningband]

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

[melina @chercheplusou]

@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.

[melina @chercheplusou]

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

[melina @chercheplusou]

@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).

[melina @chercheplusou]

@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?

[melina @chercheplusou]

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

[Todd Davenport @sunsopeningband]

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.

[melina @chercheplusou]

@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?

[melina @chercheplusou]

@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!

[melina @chercheplusou]

@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.). https://t.co/58gc16EKsj

[melina @chercheplusou]

@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)

[melina @chercheplusou]

@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.

[melina @chercheplusou]

@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

[melina @chercheplusou]

@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".

[melina @chercheplusou]

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