despite being homebound & mostly bedridden with #severeME, i have just regained the ability to 'go out' and socialise with my loved ones🥰 not in person, but virtually, using my new telepresence robot named Stan 🤖 isn't he cute?

@Emma40025133

@MoshiriDawn @NeuroSjogrens had them too, they are very helpful. now switched to Buoy (liquid electrolytes) to add them to the water i administer through the tube. tried to mix vitassium with water but it clumps and would block the tube.

@ThePOTSPostman oh and the weekly to daily critical hypoxia episodes for over a year of course. that was especially fun. who needs oxygen after all.

@Naomi_D_Harvey @Michaeltikus @AndrewG76201347 @seanstidston so interesting🤍 for me low blood volume's the culprit. hard to find veins when they're not filled enough. it only worked with just 2-3 attempts when i was on iv fluids beforehand. the other times even if they finally got access nothing would come out.

RT @BotkinsCharity: Botkins is all about providing bedridden M.E. or Long Covid patients with a tool to take part in social life again. @v…

RT @SGME_CH: Formular für Medienkontakte: #MyalgischeEnzephalomyelitis #MEawareness #ChronicIllness #MEnachCovid #…

@PaulRKeeble @cstroeckw the cost of not hurting our loved ones by simply ending it with dignity is to suffer 24/7 with no end in sight. that is much. only people who are that severe themselves get how much. i wouldn't ask this of anyone.

@ba86310 @ChrZacharias es müssen neben der neuroimmunen komponente mindestens mehrere andere systeme betroffen sein, um die ME diagnosekriterien zu erfüllen. nicht bei allen sind die selben systeme betroffen. daher ist dieser spielraum im krankheitsbild mit multisystemisch am besten beschrieben.

@ChrZacharias das missverständnis, dass ME etwas mit fatigue zu tun hat sollte wirklich korrigiert werden. das ginge, wenn man den hybrid ME/CFS nicht mehr nutzt, da es sich bei ME & CFS um zwei verschiedene entitäten handelt. so wie es die internationalen konsenskriterien vorschlagen.

RT @BotkinsCharity: Botkins is all about providing bedridden M.E. or Long Covid patients with a tool to take part in social life again. @v…

RT @Naomi_D_Harvey: 2000 signatures in one day ⭐️ Thank you! Keep it going 🔁

@TristanSnell government

@DafoeWhitney beautifully said

RT @BotkinsCharity: Botkins is all about providing bedridden M.E. or Long Covid patients with a tool to take part in social life again. @v…

RT @alexis___me: Please share & sign this petition to help Line, a 26 year old woman in Denmark who has Very Severe ME & is being threatene…