Lmst

Superbedankt aan iedereen die op het Malieveld staat, zit of ligt voor het PAIS-protest.
@longcovid@mstdn.social @longcovid@fedigroups.social
@mecfs
#LongCovid #PostCovid #MECSF #PAIS #PAISprotest #niethersteld #Activisme #RechtOpZorg

Diagnosis: Hypermobile Ehlers-Danlos Syndrome

After self-diagnosing, I got an official diagnosis. The victory of the official diagnosis was upstaged by the foot trauma two days previously, which I now know is a broken bone. However, at lest it’s in the same limb as all my other orthopedic trauma and severe arthritis. That’s really my saving grace right now — it’s a familiar injury. Adding another new mystery set of symptoms would be less welcome than rehatching an old burden.

Anyway, back to the art. I love some of the light interactive properties here that are hard to capture in a scan so:

Reflective properties close up, gold paint in the eyes, green metallic reflection for the dark around and in the eyes. The shimmer (ultra fine glittering particles) in the green ink are vibrant blue, and in the blue zebra stripes are color shifting, right now a rose.

Metallic version of the hardware in my leg — I looked at my own x-rays for reference!

Final close up.

https://www.illmarks.com/diagnosis-hypermobile-ehlers-danlos-syndrome/

#art #bodyHorror #bodyMapping #chronicIllness #connectivetissue #connectivetissuedisease #eds #ehlersDanlosSyndrome #ehlersdanlossyndrome #heds #hsd #hypermobile #hypermobileEhlersDanlosSyndrome #hypermobileehlersdanlossyndrome #hypermobility #hypermobilitySpectrum #hypermobilityspectrum #hypermobilityspectrumdisorder #longCovid #longcovid #medicalArt #MillionsMissing #pwLC #pwme

the figure in the manila bookmark has iridescent blue zebra stripes, which like a real zebra are smaller and tighter on the limbs and larger on the torso. Within the zebra's white spaces are green ink with blue sparkles, representing points of injury or trauma which have healed 'imperfectly' or had lasting trauma due to the connective tissue disorder -- the left (mirrored) leg, right inner knee, inner thighs and outer hips, some on the hands/fingers, and a splotch on the chest. The bottom leg which is very dark green has golden reconstructive hardware drawn on

Ik lig al zo lang op de bank, maar vandaag gelukkig niet alleen—vandaag doen we het samen: couch activism :)

Vanaf de bank sluiten we ons aan bij de mensen op het Malieveld en eisen:

1. Erkenning voor PAIS-patiënten
2. Structurele investering in onderzoek naar de verschillende PAIS
3. Betere zorg voor PAIS
4. Langdurig passend beleid

https://www.hetpaisprotest.nl/

@longcovid@mstdn.social @longcovid@fedigroups.social
@mecfs
#LongCovid #PostCovid #MECSF #PAIS #PAISprotest #niethersteld #Activisme #RechtOpZorg

Vijf mensen liggen ontspannen op de bank, waarbij alleen hun voeten, warm ingepakt in wintersokken, zichtbaar zijn op de foto.
Als text is rechts in beeld toegevoegd: #niethersteld couch activism 30 nov PAIS-protest

"Since 2019 disability-benefits claimants in England and Wales have increased by 1.2m (40%)." - But nobody is connecting the dots...

#LongCovid

https://www.economist.com/leaders/2025/11/26/this-bodge-it-budget-does-not-give-britain-what-it-needs

Heel veel succes allemaal vanmiddag op het Malieveld en online. En heel hartelijk dank voor jullie inzet!

Ik hoop o.a. op meer geld voor biomedisch onderzoek, preventie en een uitbreiding van de expertisecentra. Het heeft nu wel lang genoeg geduurd, zeker voor al die mensen die nog langer wachten dan mijn 3 jaar en 9 maanden #LongCovid

#paisProtest #NietHersteld

Poster met tekst "Het Pais Protest" en "Het duurt te long" met een stopwatch en #nietHersteld

Veel is herkenbaar, al kan ik gelukkig vergeleken met deze mensen nog best veel. Als je enigszins wilt begrijpen wat #pais #mecfs #LongCovid betekent, lees dit dan. #paisprotest #niethersteld https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/?referrer=https%3A%2F%2Fmastodon.nl%2F

Ik doe vandaag mee aan het online #PAISProtest en roep de overheid op tot:

1. Structurele financiering t.b.v. onderzoek en adequate behandeling en

2. Preventie: Betere voorlichting en maatregelen om nieuwe gevallen zoveel mogelijk te voorkomen.

"Empathy is not enough without the Action of Solidarity."

"Spread the word, not the virus."

#PAIS #ME #MEcvs #Lyme #ChronischeLyme #LongCovid #Qkoorts #Sepsis #NietHersteld #HetPaisProtest

Vandaag is het #paisprotest: https//:hetpaisprotest.nl. Voor iedereen die nog steeds zucht naar erkenning van artsen en hoop op behandeling, gooi ik hem er nog een keer in. Een aflevering van The Golden Girls. Uit 1989. Waarin Dorothy haar arts confronteert omdat hij haar klachten niet serieus nam: https://youtu.be/WzUEyic68Qc?si=9m6xfmz_kGFsC4r5

Hopelijk komt hier verandering in. #pais #NietHersteld #ME #LongCovid

Science for ME: News in Brief
24 - 30 Nov 2025

This week's research articles, media items, advocacy and other news relating to #MECFS and #LongCovid
@mecfs

https://www.s4me.info/threads/news-in-brief-november-2025.47075/post-657632

Online #PaisProtest

5 jaar #LongCovid.
Inmiddels is duidelijk dat post-infectueuze ziektes tot veel langere gezondheidsschade kunnen leiden. Mensen die al tientallen jaren leven met de gevolgen van lyme, ME of Q- koorts bijvoorbeeld…

Daarom roep ik de overheid op om alle mensen in Nederland beter te beschermen en te investeren in structureel beleid op:
➡️Preventie: er kan zoveel! En voorkomen is beter en goedkoper dan niet genezen
➡️Onderzoek naar effectieve behandeling

Tekening van stopwatch met grote tekst: het duurt te long #niethersteld

Er is echt op geen *enkel* terrein een langetermijnvisie bij dit kabinet.
Ongeacht of het om #stikstof of #longcovid gaat, alles op de lange baan. Stuitend.
https://nos.nl/l/2592582

@NOSRSS Dus deze mensen worden nog meer aan de kant gezet?! Besef dat dit alleen de allerergste gevallen zijn. Er zijn veel meer mensen met #LongCovid
https://mastodon.social/@pimjoosten/115633072004290596

Ik doe vandaag mee aan het online #PAISProtest en roep de overheid op tot:

1. Structurele financiering tbv onderzoek en adequate behandeling en

2. Preventie: Betere voorlichting en maatregelen om nieuwe gevallen (LongCovid!) zoveel mogelijk te voorkomen. Want #CovidIsNotOver

"Empathy is not enough without the Action of Solidarity."

"Spread the word, not the virus."

#PAIS #ME #LongCovid #Lyme #Qkoorts #Sepsis #NietHersteld

From NCNED in Australia:

Altered brain tissue microstructure and neurochemical profiles in long COVID and recovered COVID-19 individuals: A multimodal MRI study

Free fulltext:
https://www.sciencedirect.com/science/article/pii/S2666354625002005

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid

Abstract
Background
Diverse neurological symptoms are experienced by long COVID and COVID-19 recovered individuals. However, the long-term effects of SARS-CoV-2 in the brain of both groups are underexplored. This study aimed to investigate changes in tissue microstructural and brain neurochemical levels in long COVID and recovered COVID-19 patients compared to healthy controls.
Methods
We recruited 47 participants (long COVID = 19, COVID-recovered healthy controls = 12, and healthy controls without COVID-19 infection = 16) who underwent 3T MRI scans. We acquired T1 and T2 weighted images to assess myelin signal, diffusion weighted images to assess tissue microstructure, and magnetic resonance spectroscopy data to estimate brain neurochemical levels.
Findings
Our multimodal MRI study showed altered T1w/T2w signal between long COVID vs COVID-recovered-healthy controls, long COVID vs healthy controls, and COVID-recovered-healthy controls vs healthy controls. Furthermore, T1w/T2w signal intensity was significantly correlated with physical and cognitive function. Diffusion weighted imaging also showed altered tissue microstructure in these three group comparisons. However, brain neurochemicals were only significantly different between long COVID vs COVID-recovered-healthy controls.

From Belgium:

Improved functional exercise capacity after primary care pulmonary rehabilitation in patients with long COVID (PuRe-COVID)

https://bmjopenrespres.bmj.com/content/12/1/e003653

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers

Improved functional exercise capacity after primary care pulmonary rehabilitation in patients with long COVID (PuRe-COVID): a pragmatic randomised controlled trial — Tess Volckaerts et al.
"This pragmatic, patient-tailored intervention attempted to take PEM into account by informing the physiotherapist about PEM and implementing a five-phase training programme, despite the absence of established guidelines." "Individuals with a high symptom burden or experiencing PEM likely chose not to participate due to concerns about the intensive nature of the programme."

From the UK: CLoCK study

Fatigue in children and young people up to 24 months after infection with SARS-CoV-2

https://www.nature.com/articles/s41598-025-24868-x

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid
#LongCovidKids #LCKids #PASC

Fatigue in children and young people up to 24 months after infection with SARS-CoV-2 — Richards-Belle et al.
"We found limited evidence to suggest that fatigue varied by ethnicity or deprivation" "Additionally, the rate of change in CFQ scores over time was faster in females (with fatigue worsening over time), compared to males (where scores were relatively constant)."

2025-11-17 I fell and severely injured myself on the am before 31 migraine medication injections

https://www.illmarks.com/2025-11-17-i-fell-and-severely-injured-myself-on-the-am-before-31-migraine-medication-injections/

#art #bodyHorror #bodyMapping #chronicIllness #chronicMigraine #chronicmigraine #heds #longCovid #longcovid #medicalArt #migraine #MillionsMissing #mobilityAid #mobilityaid #neurology #orthopedics #pwLC #pwme

the figure on the bookmark has a bunch of prick marks on their face, neck, and shoulders with large dramatically stylized needles sticking out of them. a stylized "and" is written across their body, showing in the lower body the person's foot is aflame and smoking, with similar textures to a smaller degree on their hip, side leg, and other foot. They hold a cane

⚠️ Mild COVID, lasting damage: Long COVID w/ cognitive symptoms shows brain atrophy, iron buildup, CSF barrier changes, and injury markers (↑GFAP/NfL)—confirmed twice. Protect your brain. https://www.nature.com/articles/s41467-025-65597-z
#LongCovid #press

Neumünster, Du kleine hässliche Stadt im Norden... ich bin gerade sehr stolz auf Deinen Arzt des FEK, der genau das richtige tut

https://www.kn-online.de/lokales/neumuenster/revolution-im-rettungsdienst-neumuenster-entwickelt-konzept-fuer-me-cfs-notfaelle-ZARR3MT5DBEDBGQZL5PP4VFG34.html

#MeCFS #LongCovid

Dieptriest aangrijpend verhaal over een vergeten groep mensen.
#covid #LongCovid

https://www.volkskrant.nl/kijkverder/v/2025/postcovid-covid-corona-patienten~v2184703/

#longCOVID

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