Die fünf Ebenen des Pacings bei ME/CFS – mehr als körperliche Schonung Warum Pacing bei ME/CFS weit über körperliche Schonung hinausgeht: fünf Ebenen von Belastung – und wie sie sich im Alltag überlagern.

Ich verstand lange nicht, warum ich crashe, obwohl ich mich schone.
Heute weiß ich: Überlastung entsteht auf mehreren Ebenen – körperlich, kognitiv, emotional, orthostatisch und durch Reize.
Erst ihr Zusammenspiel macht Pacing wirksam.
pacing-mecfs.de/pacing-me-cf...
#pacing #mecfs

Wer Fragen hat, wie das "Wissenschafts"System Köllner / Seehof funktioniert, Bewertungen aus den letzten 6 Monaten. PEM wird ignoriert, auf Fehldiagnostik im Nachgang keine Reaktion. Grausam ist noch beschönigend. Und diese Praxis dient der "Evidenzbasierung". #mecfs #longcovid

Pets May Slow Dementia Progress in Older Adults Living Alone, Study Reveals | The Animal Rescue Site Living with a pet could be more than just cuddles and fun. It turns out, they might hold the key to slowing down a serious health concern that affects millions.

Pets May Slow Dementia Progress in Older Adults Living Alone, Study Reveals.
I´m 55, due to #MECFS I have no adopted cat/s anymore now.
theanimalrescuesite.com/blogs/news/p...

My Gmail inbox´s been bombed by newsletters again, due to the #MECFS I´ll have to delete 90-95 % of them later.
Now here´s the 1st free action on #AnimalWebAction.
Happy #WhiskersWednesday.
😮😮😮💖💖💖
www.animalwebaction.com/en/
@henryandfriends.bsky.social

Light blue tile with a photo of Lisa from Team Broulee Return and Earn who is wearing a lime green shirt and standing next a "Return and Earn" container bottle machine. Tile contains a quote from the team: "We were motivated to join Pedal for Power because an immediate family member lives with ME/CFS. Participating is multifaceted, raising much needed funds for Emerge [Australia] is also an opportunity to educate the community on ME/CFS ... We want people living with ME/CFS to know we see them, we value their contributions and expertise of ME/CFS through their lived experience."

Team Broulee Return & Earn have a personal connection to #MECFS through a family member. They and their community on the Sth Coast are collecting containers as part of #P4P.

Thank you for participating ✨

Create your own team - zurl.co/ED6vY

#PedalforPower #longcovid

Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center — Fehrer et al "the conference provided a comprehensive overview of state-of-the-art research on ME/CFS, covering recent advances in patient care and mechanistic insights into cardiovascular dysregulation, metabolic dysfunction, and immune dysregulation."

Expert perspectives on Myalgic encephalomyelitis/chronic fatigue syndrome – Insights from the 3rd International Conference of the Charité Fatigue Center

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#MEcfs #PwME

Donate to Urgent: Help Aura Survive Long COVID, organized by Aura C Since August, after my second Covid infection, I have been bedbound and severely ill, livi… Aura C needs your support for Urgent: Help Aura Survive Long COVID

Aura is facing a dire situation after battling #LongCovid. She’s bedbound, in constant pain, and lacks access to essential medical care and nutrition. Every donation or share can help provide her with the support she desperately needs to survive #MECFS gofund.me/af92d011a

#TheRiseandFallofReggieDinkins is playing next in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#comedy #Hotties #NEISvoid #mecfs #DisCo #ForTinu #HottieNights #spoonie

#MEcfs #PEM

"Freund:innen", die sich immer weniger und irgendwann gar nicht mehr melden, weil man einfach nicht mehr funktioniert wie früher. Es tut weh! 💔
#LongCovid
#MECFS

😷 #tdgr damit wir an Prävention denken und uns wirklich als antifaschistisch erweisen.
Wir dürfen keine Menschen ausgrenzen!
Jeder kann vulnerabel sein.
#MECFS #LongCovid

今日は三角コーンをお届けします😃

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

Sehr wichtig ME/CFS sichtbar zu machen!
Dankeschön.

#PostCovid
#MECFS

also went through significant troubles when the admin was specifically targeting the university. NIH-funded #MECFS research keeps moving forward but funding is imperiled, is my personal read.

ClinicalTrials.gov

Mt Sinai clinical trial of Lumbrokinase is now offering a decentralized option so you can participate from home, for #LongCovid #LymeDisease #MECFS #pasc h/t @thesicktimes.org clinicaltrials.gov/study/NCT065...
I'm not stable again yet after leaving LoCITT so not joining this one myself

DRV-Konferenz im März: Wo Köllner / Kupferschmitt dran steht, ist es auch drin. Differenzierter sieht es im gleichen Rahmen beim Rehazentrum Oldenburg aus, welche auch bei der Aufnahme schon auf Bell-Score achten. #longcovid #mecfs

express.converia.de/frontend/ind...

a cartoon of a man with a monkey 's face on his face ALT: a cartoon of a man with a monkey 's face on his face

Season finale episodes of #TheDarwinIncident are playing now in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#anime #animation #neisvoid #mecfs #DisCo #ForTinu #spoonie #cannabiscommunity

Neue alte Ärzte, die sich nach "Hörensagen" als Experte von #PEM
sehen und ihre Macht ausleben #PEMistNichtVerhandelbar #MECFS

Es wird ein weiteres Jahr des Kampfes für eine menschenwürdige Grundversorgung werden

#DasKannManNieWiederGutMachen
#ManWillEsAberAuchNicht

4/4

Und so ging nun auch der März vorbei, politisch sichert man sich seine Existenz, das wird dauern

Uns erreichen Schicksale, die wütend machen, alle vereint in der Suche nach nicht vorhandenen Ärzte, machtlos der Zustandsverschlechterung gegenüber zu stehen.

#MECFS

3/4

Ich korrigiere, nicht vergessen sondern am Schreibtisch Versorgungswege entworfen, ohne je #MECFS zu sehen, was die grausame Erkrankung, die alles Leben nimmt, in der Realität heisst

Was es heisst, keinen Kardiologen seit Jahren zu haben, keinen Augenarzt, keinen ...
2/4

#StillUndLeise
#MECFS

Ignorieren von körperlichen Probleme aus einem Jahrzehnt inzwischen

Zu sehen wie für andere Erkrankungen selbstverständlich eine medizinische Grundversorgung vorhanden ist, hat man die Schwerstbetroffenen #MECFS einfach vergessen

🧵 1/4

"Our study joins a growing body of work by scholars and patient advocates calling for recognition, respect, and reinvestment in the lives of those with severe ME/CFS These individuals are not invisible by choice; they are rendered invisible by systems that refuse to acknowledge their existence and suffering. Listening to their voices is a moral imperative, a research necessity, and a first step toward justice." RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942 Nezamdoust and Ruel. Social Science & Medicine (2026)

ME Research UK:

A team of researchers have published a study investigating lived experiences of people with ME/CFS using data from posts made on social media.

Read more: tinyurl.com/mj2p8c24

#mecfs #cfs #pwme #severeme #severemecfs

2/
ME Research UK:

It is worth noting that different studies can produce different results. In a different study
www.meresearch.org.uk/t-cell-exhau...
that was focused on "ME cases that were triggered before the emergence of SARS-CoV-2", T cell exhaustion was noted in participants.

#mecfs #pwme

Could identifying the viral trigger of ME/CFS inform future therapeutics? A recent study analysed immune cells from 10 individuals with long COVID (LC)-ME/CFS (meeting Canadian Consensus Criteria) and 10 controls (recovered from infection) Findings were compared with existing datasets from idiopathic ME/CFS patients. Whilst there were similarities, LC-ME/CFS showed both extensive immune cell depletion AND hyperactivation, whereas idiopathic ME/CFS showed immune cell activation without the same level of immune cell loss. Signs of T cell exhaustion (T cells overworked to point of malfunction) present in LC, not in idiopathic ME/CFS. As this is a snapshot, it cannot rule out that idiopathic ME/CFS might start out with similar immune changes. Though, these results suggest that understanding viral triggers like SARS-CoV-2 could guide future therapeutics. Note: authors do not define idiopathic ME/CFS Shahbaz, S. et al (2026). Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion, and Galectin-9—associated depletion of gamma delta and mucosal-associated invariant T cells in Long COVID with ME/CFS. Frontiers in Immunology, [online]. INFORM. INFLUENCE. INVEST. Ihea RESEARCH UK SCO36942

ME Research UK:

A recent study found differences in the extent of immune changes in ME/CFS following SARS-CoV-2 infection vs. idiopathic ME/CFS. Do different viral triggers produce variations in underlying pathophysiology?

Read more: tinyurl.com/543kcekm

#mecfs #pwme #cfs
1/

I'm looking for 2 senior research technicians to work on the #SequenceME and #LongCovid study. Based in the @uoe-igc.bsky.social you will sequence decodemestudy.bsky.social samples using @nanoporetech.com long-read platforms to identify #MEcfs causal genes and pathways.
Apply here: edin.ac/3O7ch7X

One small positive thought in the morning can change your whole day. #recovered #anxiety #nevergiveup #eatingdisorder #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia

My takeaway from the #NIH #MECFS conference is the value of the NIH Center grants. Not only have I seen a lot of great research come from the Centers, they've been on-ramps for PhD candidates, post-docs and other early career investigators. Funding the Center model has inarguably expanded the field.

Wenn #Krankenkassen #sparen wollen würden, dann könnten Sie aufhören sinnlose #Rehas für Menschen mit #Mecfs zu finanzieren, die immer noch breitflächig ohne jegliche Evidenz aktivieren und damit Behandlungsfehler, gesundheitliche Verschlechterungen und hohe Folgekosten systematisch provozieren.

Ärzt*innen, die die Verwendung des Internets durch ihre Klientel beklagen, sollten sich lieber an informierte Patient*innen gewöhnen u. sich darüber freuen!
Zu späte Diagnosen könnten vermieden, daraus resultierende Kosten eingespart werden!

Nicht nur bei #MECFS, auch bei div. anderen Erkrankungen.

Update on my #AggressiveRest journey:

I thought I was resting before, but not nearly enough. My tracker helps me see this. Wish I'd realized before I got to this point.

Stress is as challenging as physical activity. Must work hard to avoid both.

I keep on keeping on.

#PwME #MECFS #LongCovid