I need to collect all my graphs, and then dive into some of the research papers about steroid injections as treatment for #mecfs.
My next visit with my primary care physician might end up being less of a check-up and more of a doctoral dissertation defense.
I just had to delete some newsletters from the weekend, I have no time to work them up anymore due to #MECFS.
1st free action is on #AnimalWebAction.
Happy #Mewsday meowing to all furriends & friends.
💖💖💖
www.animalwebaction.com/en/
@henryandfriends.bsky.social
I cannot love this song more❤️❤️Check it out if you haven't, you'll never hear this on the radio (not in Canada anyways)
TW: tough but necessary discussion about mental health struggles
#music #hiren #mentalhealth #autoimmunity #mecfs #lyme #psychosis #therapy #hope
And that overall my right side is weaker.
He ruled out stroke, but was very understanding of what MECFS was when I said I didn’t want to stay and do any imaging unless he thought I really needed it.
Even though it was only 2.5 hours I will now need to rest intensely.
Don’t get #longcovid #mecfs
Nina E. Steinkopf, patient advocate, has written an article about a huge allocation to professor Wyller and his team for research into rehabilitation of "persistent fatigue" where misleading graphs were used in the project description. Article l Thread
Nina E. Steinkopf @ninasteinkopf.bsky.social has written an article about a huge allocation to professor Wyller and his team for research into rehabilitation of "persistent fatigue"
melivet.com/2026/03/28/2...
www.s4me.info/threads/meli...
Screenshot from Science for ME update
#MEcfs #LongCovid
Transfer of IgG from long COVID patients induces symptomology in mice — Hung-Jen Chen et al
"our study provides evidence for a pathogenic role of IgG in long COVID"
#MECFS
BBC Wales Our son loved the outdoors – invisible illness means he now can't walk or talk The article includes several people with ME/CFS in Wales where NHS services are patchy. The Welsh Government is quoted: "Proposals for an all‑Wales specialist, an expert group and national standards are being actively considered as part of the service's ongoing development." Dr Charles Shepherd and several people with ME/CFS took part in a BBC Radio Wales phone-in. Duration 26 minutes.
BBC Wales covers ME/CFS with text and radio pieces
www.bbc.com/news/article...
www.youtube.com/watch?v=r1S2...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #SevereME #SevereMECFS
UK DHSC delays commissioning of services for the most severely affected The Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS. This is said to be due to wider organisational changes within the NHS. #ThereForME have produced a PDF briefing on the topic. PDF | Thread
The UK Department of Health and Social Care now expect that work will begin in April 2027 to start the process of commissioning a service for those with very severe ME/CFS
ugc.production.linktr.ee/8dd80874-c0a...
Screenshot from Science for ME update
#MEcfs #PwME #SevereME @thereforme.bsky.social
#ZIWE's interview of Leslie Jones is playing next in the #ChronicLoaf stream
mzelo.com/app/rooms/ch...
#WomensHistoryMonth #NEISvoid #mecfs #DisCo #cannabisculture
Paxlovid shows organ-specific and age-specific impacts on risk of developing post-acute sequelae of COVID-19 — Azhir et al
"We applied multivariable logistic regression with inverse probability weights to infer causal effects"
#MECFS
今日は過日の青空をお届けします😃
筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。
#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge
Our Scientific Director, Jaime Seltzer, is at an NIH ME/CFS conference today - working hard for our community as always!
Thank you, @exceedhergrasp1.bsky.social!
#pwME #MECFS #MyalgicEncephalomyelitis #NIH
Jetzt wisst Ihr, was gerade mit mir los ist.
19/19
#MECFS #MyalgischeEnzephalomyelitis #PEM #Nierenversagen #Krankenhaus #Leiden #ChronischKrank #BellScore
Da bist du leider an eine eher impfskepsische Impfperson geraten, ja, fast eine, die das Prinzip Impfung gar nicht so richtig verstanden zu haben scheint, und obendrein ganz offenbar nichts von #LongCovid #PostCovid und #MECFS weiß. Schlimm.
😷 #tdgr damit wir an Prävention denken und uns wirklich als antifaschistisch erweisen.
Wir dürfen keine Menschen ausgrenzen!
Jeder kann vulnerabel sein.
#MECFS #LongCovid
I can't recommend this @quietriotpod.bsky.social special highly enough if you want to understand #LongCovid
All the important issues covered.
If you want to know more about what #MECFS is like, please look out for our forthcoming book.
open.spotify.com/episode/1YGg...
"Darf" ich völlige Empfindlichkeit als 'vorstufe' zu PEM sehen?
Irgendwie denke ich nämlich, dass das ja mal wirklich nur Anstellerei ist und solange nichts gravierend körperliches ist zählt das schon gleich gar nicht 😬
Zumindest nicht in diese Richtung. Bin mir aber nicht sicher.
mgl #mecfs
I hope the results of this study do not deter cardiologists from prescribing ivabradine. For some of us, it was the key to a more stable life
#MECFS #POTS #IST #SVT
Jaime Seltzer, a white woman with brown, curly hair wearing a light grey button-down under a dark grey business jacket, grey glasses. I look.. a little frazzled, lol
At the #NIH #MECFS Conference today! Presenters from those involved in the Collaborative Research Centers: Cornell, Columbia, ICanCME (Canadian network), RTI and NIH staff.
Auch in Essen demonstrieren wir für #aufklärung #versorgung und #forschung am 10.05.2026 von 15.-17.Uhr vor dem Grugapark ⏰
Sei dabei und helfe uns!
#LiegendDemo #LiegendDemoEssen
#Mecfs
Metacognition and cognitive dysfunction in post-COVID condition — Oliver-Mas et al
"In general, patients with PCC showed inaccurate judgments in both local and global metacognition compared to HC."
#MECFS
Hello and welcome to AuDHD, The Worst Superpower™️. For today's episode we're visiting Suzanne, whose combination of racing ADHD mind, creative hyperfocus, and disabling #MECFS means she is basically fighting a dragon in order to rest. #AuDHD
IMAGE DESCRIPTION: Photo of a man lying in bed, looking at his phone. MEA and ME Connect logos. Wording reads: "I'm very glad there is someone to talk to who understands."
ME Connect is our free, confidential helpline service offering support, information and signposting for people affected by ME/CFS and Long Covid.
Get in touch:
0808 801 0484
meconnect@meassociation.org.uk
#MECFS #pwME #LongCovid #MEConnect #Helpline
Pour l’instant, vous y trouverez des témoignages, des analyses… à vous de compléter !
Abonnez-vous à notre newsletter mensuelle pour ne rien rater.
comprendrelem.fr/a-propos/new...
#paEM #pwME #MECFS #EMSFC
La Revue Comprendre l’EM. Première colonne : Un site de référence (L’EM c’est quoi ; L’EM et moi ; Pacing ; Enjeux ; Soutenir). Deuxième colonne : Documents à télécharger dans différents formats accessibles. Troisième colonne : Un blog pour réfléchir (Analyses, Témoignages, Art, Interviews, etc.)
Comprendre l’EM est une revue en ligne en 3 parties.
1 - Un site de référence
Des informations fiables, basées sur les consensus scientifiques et sur l’expérience des patients. Des savoirs accessibles, didactiques, faciles à lire et joliment illustrés.
#paEM #pwME #MECFS #EMSFC
What an incredible community! Thank you everyone for your interest in our trials for #LongCOVID, #MECFS and chronic #lyme. Our coordinators returned to work today with full inboxes from interest in our decentralized trials. So much gratitude for you all. Thank you! 🙏🏻
CN Sterbehilfe
#MECFS
You're allowed to outgrow who you thought you were supposed to be. #recovered #ED #anxiety #nevergiveup #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
I've tried contacting adult social services, fatigue clinic, GP (including switching surgeries twice), relatives, ME charities, and a domestic violence helpline. I have got nowhere #MECFS please DM or reply if you can help at ALL
Is anybody here based in the UK and able to support me in any way? I'm in the South West, if that makes a difference. I have NO support irl, no relatives or friends to help me. Stuck in abusive house, moderate-severe #MECFS
I am *desperate*
Please reply or DM if you can help in any way
