MEnaced

Lotte has lived with #LongCOVID for 6 years. At her worst she spent 22 hrs a day in bed and was unable to hold a conversation. She worries about her future as the Dutch government doesn’t treat it as a priority and not enough is being done to help her take part in society again.

@Parunzel_ @Ramyisback @NeleHelena Same, with too much use of my muscles (less since I became bedbound)

@Ramyisback @NeleHelena Yes! After overdoing it. Too little pacing, too much use of my muscles. I can also trigger it with fascial release exercises.

Does anyone get these tremors? I swear to God I am not consciously moving my fingers? I have REM sleep disorder and a history of Parkinson in the family.

Status subsidieronde #ME #MEcvs bestaande geneesmiddelen (waarover flink ophef was/is). Er zijn geen aanvragen ingediend. Nog onbekend hoe de € 3,5 miljoen nu zal worden besteed. @ZonMw beweert (alweer) te hebben geleerd. Dat zijn dan heel dure lessen. zonmw.nl/nl/nieuws/upda…

Hunter Adkins, a 24 year old man with muscular dystrophy, was killed while boarding an Allegiant plane Staff used a wheelchair without safety straps & pushed him down the ramp and onto the floor where he was crushed He had multiple blunt force injuries & died the next day

@useless_priest Yeah, all 3 (back when I used to eat, even while laying down)

Omg I finally figured out how we’re gonna solve the issue of Covid mitigations being expensive! Okay so believe it or not, it involves inciting group harassment of disabled people who’ve had to go into credit card debt to protect what’s left of their health,

I’m not able to stay up to date but it looks like both the Dutch and UK or English guidelines are currently being postponed by 2 and 1 years respectively? Correct me if I’m wrong

Als (na eerder al 3 jaar uitstel) 1 maand voor de deadline nog eens op 2 jaar vertraging wordt aangestuurd, dan is er m.i. iets grondig mis met de ontwikkeling van de nieuwe (behandel)richtlijn #ME #MEcvs 1/4

Quick follow-up: Thank you for everyone reaching out via various channels. I am interested in exchanging ideas around building advocacy, a charity, or a research foundation, and exploring what could be helpful in China. Happy to support or contribute where appropriate. Please feel free to share on WeChat, Weibo, Xiaohongshu,... Thanks. 🙏💙

@Gmwetz It made me flu-ish and caused more phlegm, didn’t experience any benefits only side effects

I took 500mg of Lactoferrin on an empty stomach two days ago and 3 - 4 hours later my cognitive issues increased drastically with a concussion like confusion feeling. It’s better now. Is there anyone out there who got also bad effects from it ?

Result. The Pulse conference/training is today and the replaced the ME talk with one about asthma. events.cogora.com/pulsevirtual-p…

So in Belgium they screened the German ME documentary "Chronically Ignored" at a major documentary festival last weekend. And they invited two of our most prominent biopsychosocial doctors to comment on it 😳

Our son loved the outdoors – invisible illness means he now can't walk or talk bbc.in/4sxUCVW

Anyone in welly or wherever wanna help me figure out a better set up for my cci and using phones I genuinely feel like my heads gonna fall off and I’m getting worse like vertigo dizzy shit then ever before

Very sad to hear of the death of David J Black who wrote some very important pieces on #ME. His son is severely affected and now lives in hospital. Black never mentioned that. David J Black | Scottish Legal News scottishlegal.com/articles/david…

Well it is happening. I am starting to crash into very and extremely severe category. All because one Night of loud music from the new flatmate was enough to crash me to this. I want the Community to know what is happening here and that this might be my end

Wondering if there were any updates on Justice for M.E which haven't been shared on the petition. The last update was on 2.11.'25, it always says '11 days to go' Apologies if I've missed any news & updates on this #ME #pwME #MEAwareness crowdjustice.com/case/justice4m…

This will be my last post for a while. I'm declining even more and I need to step back and survive (my toxic parents). If something happens, I just hope I'm not forgotten. Maybe I'll at least get my blue rose. I still hope I'll make it through. #mecfs #pots #longcovid

Aantal arbeidsongeschikten groeit. "Forse financiële tegenvaller". Volgens UWV is Long Covid een vd hoofdoorzaken. Jetten wil fors ingrijpen. Niet met betere zorg, maar met gehandicapje pesten. Uitkeringen omlaag, minder toekennen, etc. Fors asociaal. Het is crepeerpolitiek wat er bij Long Covid en PAIS wordt bedreven. Het kabinet van lang verwaarloosde problemen aanpakken en "het kan wél"-optimisme zet 0 euro in voor nieuw onderzoek en ziet medische zorg voor Long Covid liefst zo snel mogelijk verdwijnen. Dan blijven we uitzichtloos ziek -excuus- dan blijven we een structurele financiële tegenvaller Rob.