Fatigue är inte bara “trötthet”.
Ny forskning från Medect/Bragée pekar på biologiska mekanismer bakom symtomen – något patienter länge vetat. medect.se/ny-forskning...
#Postcovid #LongCovid #MECFS #Karolinska #Medect
Bei #MECFS greifen Fehlpassungen so tief, weil alle Ebenen gleichzeitig fest sitzen:
1️⃣ Falsche Grundannahme über die Erkrankung ist eingebaut
2️⃣ Strukturen bilden krankheitsdefininierendes Kernmerkmal PEM nicht ab
3️⃣ Umsetzungspraxis stabilisiert diese Lücke, auch in korrekt angewendeten Verfahren
7/x
From FitBit to Visible: Learning to Live with M.E.
buff.ly/v9tjfaH
#ChronicIllness #MECFS #Disability #Spoonie
The #BobtheDragQueenThisIsWild, stand up special, just started in the #ChronicLoaf stream
mzelo.com/app/rooms/ch...
#NEISvoid #mecfs #ForTinu #spoonie #lgbtqiaplus #comedy #ChronicPain #ForTinu #SexTalkSunday
Hahaha
Erstmal keine Befehle!
Zweitens, soweit kann ich nicht laufen!
Drittens, mein Körper braucht jetzt optimale Schonung!
Hab sowieso schon zuviel Stress und demnächst auch mit jemand, der das regeln kann, keine Ahnung von #MEcfs + Kormorbitäten hat.
12th of May is is M.E. Day "There is no passion to be found playing small - in settling for a life which is less than the one you are capable of living" Nelson Mandela Let's make some noise!
One month to go to May 12, International ME (or ME/CFS) Awareness Day.
A great opportunity to raise awareness and understanding. Also the day (and the associated awareness week/month) can be used for lobbying, fundraising, and other forms of activism.
#MEcfs #PwME
Two distinct peaks in age of ME/CFS onset) "Our findings suggest that incidence of ME/CFS peaks in adolescence and early middle-age, and that early onset ME/CFS is more common in those with affected relatives, more often triggered by infection, and associated with more severe disease" (The first peak appeared in adolescence, with an average age of onset of 16 years. (-Fhe second peak was middle age, with onset age averaging 36.6 years. Note: Graph is is0 for illustrative purposes only Age of onset INFORM. INFLUENCE. INVEST. SCO36942 RESoArH 80 McGrath S et al., Oxford Open Immunology (2026)
ME Research UK:
Researchers have looked at survey data from over 9,000 people across 10 European countries and observed two peaks in ME/CFS onset.
Read more: tinyurl.com/3utbebt5
#MEcfs #PwME #CFS
One day you will thank yourself for never giving up. #recovered #anxiety #irondeficiency #nevergiveup #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
"Bin am End, ein Tier im Netze.
Fern gibt’s Menschen, Freiheit, Licht"
verstehen sich anders.
#MECFS
Experiences of emotional harm from diagnostic delays (.• Delayed, missed, or incorrect diagnoses are collectively known as 'medical misdiagnosis'. • Medical misdiagnosis - regrettably, something a significant number of individuals with ME/CFS are all too familiar with - is known to be a significant healthcare • challenge that can lead to harm or, in rare cases, death. } • Research investigating the emotional impact of misdiagnosis identified three major themes: "Feelings of being dismissed by medical professionals as a diagnosis was sought" "Feelings of validation and relief when a diagnosis was obtained" "Long-term emotional impacts resulting from feeling invalidated" Long-term emotional impacts resulting from feeling invalidated" The research team concluded that "The emotional and relational dimensions of delayed diagnosis are of primary importance to patients and can have long lasting effects on trust and engagement with healthcare." Importantly, this appeared to be the case even after a correct diagnosis had been given. Note: Although this research did not include participants with ME/CFS, findings may • be relevant to those with the disease who experience misdiagnosis INFORM. INFLUENCE. INVEST. SCO36,42 RESEARCH HK McCleskey et al., Patient Education and Counseling (2026)
2/
ME Research UK:
Delayed diagnosis has been found to lead to ‘emotional harm’, primarily stemming from feeling dismissed by clinicians, rather than the delay itself.
Read more: tinyurl.com/5du3bhav
#chronicillness #mecfs
Does anyone with #LongCovid #mecfs #pots #mcas have problems with their vision? I have blurry vision from about 2-5 meters distance, my left eye seems to be more affected than my right eye. It is not always the same: sometimes it's worse. Mainly after food or physical exertion it seems. I wonder […]
En dan ga ik nu even dealen met de frustratie dat ik de tuinklus niet kan afmaken want er moet gepaced worden #LongCovid #mecfs
vorbereitet sein sofort handeln zu können- und sei es nur die Info weiterzugeben. Früher auch auf Demos gehen, sich einbringen, selbst organisieren- das geht jetzt gesundheitlich nicht mehr (fck #MECFS) und hat die #Handlungsfähigkeit, eins meiner wichtigsten #Werkzeuge damit umzugehen, sehr 3/
Keine weiteren Newsletter mehr bei Gmail, ich geh jetzt offline bis morgen früh, auch wegen #MECFS, schaue noch etwas fern.
#ByeBye, liebe Online-Freunde und -Fellfreunde.
💖💖💖
de.wikipedia.org/wiki/Myalgis...
Frage an die Juristen, geht sowas wie eine Amtshaftungsklage gegen unsere Ministerin?
Die Bürokratie und fehlende Richtlinien haben meinen Zustand massiv verschlechtert.
Das kann doch nicht Rechtens sein?
#Mecfs #unversorgtseit1969
Leider nein. In Deutschland sind es 63,1 Milliarden jährlich für #LongCovif und #MECFS, es kommen konservativ gerechnet jährlich 30000 neue MECFS Patienten dazu. Aber was man 57 Jahre ignorieren konnte, geht auch nach einer Pandemie. Es wirken die gleichen Verdrängungsmechanismen.
Professor Chris Ponting on how findings from the largest genetic study in #MECFS show “there is an organic disease called ME”.
“We’ve had letters from GPs saying we have changed their minds”
Clip from Hope 4 ME & Fibro NI Collaboration
Die meisten Menschen mit MEcfs #MEcfs haben jetzt schon keine oder zu niedrige Pflegestufe.
20 years anniversary for UK charity Invest in ME Research and this is a 20 years logo symbolising the many different spin offs from the work of the charity and its supporters
Welcome to International ME Conference Week 2026 - IiMER Chairman's Welcome Message
www.investinme.org/confweek-cha...
#mecfs #BRMEC15 #IIMEC18 #RESEARCH #EMERG #YoungEMERG #IMECW2026
bsky.app/profile/mari...
Ich hab schon eine Einkaufsliste geschrieben, weil ich u. a. noch 6 Dosen Mais & 1 l Rapsöl vom Aldi brauche, ich hab ja wegen #MECFS oft #BrainFog und kann mir nichts mehr merken.
😮😮😮
Wort zum Sonntag:
Es gibt #mecfs - Betroffene, die kein(e)
- Eltern,
- Partner,
- Erspartes,
- EWMR,
- Privatärzte
haben. Von mitbetroffen Kindern ganz zu schweigen. Dies sollte man immer mitdenken, wenn man sich zur Sache äußert.
#longcovid #postvac
I haven't been able to do connections (other than the odd fluke) since my shitty #mecfs month in February. Urgh. I think my brain's just permanently gone down another notch. 💔
This Is the Best Time of Day to Nap for a Better Memory, Says a Neuroscientist.
My inner clock´s totally misprogrammed now, I get up at 4-5 am and have to go asleep at 5-6 pm, due to #MECFS.
www.thehealthy.com/aging/mind-m...
Finally I can check out the Relevator newsletter from the 9th of this month, stupid #MECFS.
After Toxic Algae Blooms, Cayuga Lake Enters ‘The Twilight Zone’
therevelator.org/toxic-algae-...
@johnrplatt.bsky.social
i want to draw more now than before
and i often want that when i am well enough to want more from life
my version of wanting more is still small and gentle
i want to color hehe
but it would open up my world of experiences so much, when i have so little
#MECFS is so awful
Katzenpfote die gelbe KuschelDecke über sich zieht.
Die einzige dauerhaft wirksame Therapie bei #Mecfs
Ohne mein KatzenMaedi wäre ich schon lang tot.
#MeCfs ist wenn du eine Krankheitslast hast, die höher als bei Krebs ist.
Dein Zustand sich schon bei zuviel Licht, Emotion oder einfach so massiv verschlechtert.
ABER Das System welches dir helfen sollte, dich für eine Simulantin hält und dich damit noch mehr zum Pflegefall macht.
Photo of Congress Tell Congress: Fund ME/CFS Research Now This year, Congress has the opportunity to change the trajectory of medical research for the ~9 million people in the US living with with ME/CFS. The FY26 appropriations bill took an important first step by continuing to fund the CDC's Chronic Fatigue Sydrome Program, and keeping ME/CFS as an eligible topic area in the Peer Reviewed Medical Research Program. It also directed NIH to develop an implementation plan for the ME/CFS Research Roadmap — a comprehensive, expert-developed framework for advancing biomarker research, diagnostics, and clinical trials. NIH Director Dr. Jay Bhattacharya has publicly affirmed that ME/CFS is real and that a new approach is needed. There is real, bipartisan support for making a change. FY27 is the moment to match that recognition with real resources. Read more here>>
(US)
Tell Congress: Fund ME/CFS Research Now
Deadline is April 15 I believe
solvecfs.quorum.us/campaign/157...
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME @solveme.bsky.social
今日は公園のフェンスをお届けします😃
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
