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energy-minimalist.bsky.social
Hana
@energy-minimalist.bsky.social
14 followers 26 following 9 posts
ME/CFS and not much else.
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energy-minimalist.bsky.social
I want to have a gentle autumn.
With severe ME? Impossible, ofc. But I can hope for a season of fewer crashes and a whisper of pixie dust scattered across this bed, holding me patiently as the leaves turn. #mecfs #pwME
September 21, 2025 at 8:02 AM
Reposted by Hana
heikewigr.bsky.social
"Es sind viele. Viele, die so schwer krank sind, dass sie noch nicht einmal ihr Bett verlassen können. Mit dem internationalen #LongCovidAwarenessDay (...) kämpfen Betroffene für mehr Sichtbarkeit und Aufklärung."

Artikel, der von der dpa übernommen wurde. Leider 1/

www.stern.de/gesellschaft...
Chronisch krank: "Wir sind nicht tot" - Aktionstag zu Long Covid | STERN.de
Berlin (bb) - Bis vor zwei Jahren ging Sophie Dimitriou noch jeden Tag Tischtennisspielen. Sie hatte einen Vollzeitjob, ein aktives Freizeitleben, ging
www.stern.de
March 15, 2025 at 7:11 PM
Reposted by Hana
sibylledahrendorf.bsky.social
Mal ne gute Nachricht: Online in der arte Mediathek bis Februar 2026 #ChronischKrank #ChronischIgnoriert. Was aus dem Upload auf dem YouTube Kanal wird, keine Ahnung. Wird man rausbekommen. Dann noch hoffen auf internationales Streaming. Bitte verbreiten 🙏

🎥 www.arte.tv/de/videos/10...
Chronisch krank, chronisch ignoriert - Die ganze Doku | ARTE
Myalgische Enzephalomyelitis/Chronisches Fatigue-Syndrom (ME/CFS) ist eine Multisystemerkrankung mit verheerenden Folgen. Seit Jahrzehnten wird sie immer noch missverstanden, sie ist kaum erforscht un...
www.arte.tv
March 15, 2025 at 7:30 PM
Reposted by Hana
lifeatthewindow.bsky.social
My incurable illness, for which there is no treatment, stole my ability to work.

I am bedbound.

I will likely be found unfit to work for the rest of my life.

Now the Labour gov wants to slash my social security because I can’t work.

What future do I have?

#pwME #DisabilityRights #Labour
A split screen showing two photos of the same white woman, one on the left taken before the onset of severe myalgic encephalomyelitis (M.E) and the other, on the right, after. In the left hand ‘before’ photo the woman looks well and vibrant and happy, smiling with long hair curled and tied back, and dressed in an outfit. In the ‘after’ photo, the woman looks extremely unwell and exhausted with hair cut off, old comfy clothes and a look of defeat on her face.
March 10, 2025 at 4:10 PM
Reposted by Hana
whitneydafoe.bsky.social
I want to announce my new Print Store!

www.whitneydafoe.com/store

I have been working on putting this store together for 2 years now…The images were all taken before I became severe with ME/CFS in 2013…So it is a sort of parallel dimension time capsule of what could have been with my life
March 10, 2025 at 3:20 PM
Reposted by Hana
neurostingl.bsky.social
Small Fiber Neuropathie/Pathologie spielt bei #LongCovid eine Rolle, und wie diese Arbeit zeigt, gibt es Hinweise auf Autoimmunität und ein Ansprechen auf IvIg.

IvIg helfen sicher nicht bei allen Betroffenen - Prädiktoren für einen Effekt zu finden, ist wichtig.

www.medrxiv.org/content/10.1...
Analysis of 977 Long COVID Patients Reveals Prevalent Neuropathy and Association with Anti-Ganglioside Antibodies
Background: Long COVID (LC) is a novel condition that is characterized by persistent symptoms that last from months to years following a SARS-CoV-2 infection. While LC symptoms vary widely, neuropathy...
www.medrxiv.org
March 10, 2025 at 9:06 PM
Reposted by Hana
lifeatthewindow.bsky.social
…of hysteria, attention seeking and illness faking behaviours.

Our pain is denied. Support is withheld. Diagnoses are delayed.

I’ll probably never see a day again in which I get to be the person I wanted to be. This in large part because I’m a woman, and medicine is misogynistic.

#IWD
March 8, 2025 at 10:22 AM
Reposted by Hana
lifeatthewindow.bsky.social
On International Women’s Day I’d like to highlight that two of the three conditions I live with disproportionately impact women/people AFAB.

Endometriosis and M.E. have both been sidelined in research and treatment.

People with these conditions are routinely gaslit, denied care and accused…

#IWD
March 8, 2025 at 10:19 AM
Reposted by Hana
verhac.bsky.social
@scheibenbogen.bsky.social in der #ZIB2 zu #LongCovid und #MECFS.

Wenn nur mehr Leute so vorbereitet zum Thema wären und solche Fragen hätten wie @stefanlenglinger.bsky.social…
1/2

on.orf.at/video/142663...
Long COVID: Alltagsaktivitäten führen zu Verschlechterung - ZIB 2 vom 07.03.2025
Carmen Scheibenbogen, Immunologin an der renommierten Charité Klinik in Berlin, ist eine der wenigen Forscherinnen in Deutschland, die sich speziell mit ME/CFS befassen. Im Interview gibt sie Einblick...
on.orf.at
March 8, 2025 at 6:33 AM
Reposted by Hana
astridhainzl.bsky.social
#MECFS ist bis heute nicht erforscht, Betroffene nicht versorgt, weil es leichter fällt, schwer kranke Frauen als hysterisch zu bezeichnen, als sich mit einer komplexen Erkrankung auseinanderzusetzen.

Auch deshalb brauchen wir den Internationalen Frauentag heute immer noch!
March 8, 2025 at 8:04 AM
energy-minimalist.bsky.social
Pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain.
#MeCfs
March 8, 2025 at 8:32 AM
energy-minimalist.bsky.social
With severe ME, my almost non-existent energy means every tiny thing is a choice: read a few pages or have dinner at the table, watch part of a film or brush my teeth... It's a constant balancing act, where even the smallest moments must be carefully planned.
#MeCfs
March 6, 2025 at 5:04 PM
Reposted by Hana
lifeatthewindow.bsky.social
PEM is the devil, taking whatever little baseline you have and destroying it so that even breathing and talking are painful.

I’m admittedly struggling with the incessant recurrence of it, and the hollowed out way of life it leaves us with.

Struggling to ‘hope’ my way through it.

#pwME #MECFS
March 6, 2025 at 4:27 PM
Reposted by Hana
tomkindlon.bsky.social
🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

www.eurekalert.org/news-release...

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

#chronicillness

1/
News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
March 5, 2025 at 3:51 PM
energy-minimalist.bsky.social
Living with ME, even the smallest things like a short message or a 15-minute visit, feel huge and bring me deep joy. These quiet moments of connection mean everything when the rest of life is so very limited.
#MeCfs
March 6, 2025 at 3:41 PM
Reposted by Hana
binitakane.bsky.social
Beautifully written by @drjogreer.bsky.social a Mum caring for a daughter with severe ME.
'The Red Tree' and M.E. - One leaf at a time
Images used with kind permission from Shaun Tan
theredtreeandme.substack.com
December 16, 2024 at 8:43 AM
Reposted by Hana
helldogbe.bsky.social
Low spoonie version of the PEM study of cerebrospinal fluid alterations in #MECFS
Cerebrospinal Fluid Metabolic and Lipidomic Alterations in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) • This study investigated cerebrospinal fluid (CSF) metabolomics and lipidomics in ME/ CFS patients, comparing them to sedentary controls, both at baseline and after submaximal exercise to model post-exertional malaise (PEM). ME/CFS patients showed elevated serine and reduced 5-methyltetrahydrofolate (5MTHF) in their CSF, indicating disruptions in one-carbon pathways and serine metabolism. • Further analysis revealed elevated levels of sarcosine, creatine, purine intermediates, and transaconitate in ME/CFS patients, suggesting alterations in multiple metabolic pathways including the tricarboxylic acid (TCA) cycle. • Exercise led to lipid consumption in both ME/ CFS patients and controls, but metabolite consumption in ME/CFS patients contrasted with metabolite generation in controls. highlighting a differential metabolic response to • Pathway enrichment analysis revealed significant alterations in methionine phenylacetate, pantothenate, pyrimidine, glycine, serine, arginine, proline, riboflavin, and betaine metabolism, implicating dysfunction in several key metabolic processes. • Lipid analysis showed enrichment in nervous tissue components, suggesting potential myelin and white matter dysfunction in ME/ CFS, further supported by pathway analysis indicating involvement of oligodendrocyte specification and sphingolipid pathways. • Correlations between metabolite levels and questionnaire items revealed associations between elevated serine and fatigue, consistent with ME/CFS diagnostic criteria, while other metabolites showed links to exercise, gender, and age, emphasizing the complexity of metabolic dysregulation in this condition
March 3, 2025 at 9:20 PM
Reposted by Hana
mamguwithme.bsky.social
Hi all #pwME I'm struggling mentally, I'll have been bedbound/housebound for 10 years, next Xmas and its really affecting me. Usually, the Sickaversary passes me by with no effect, but 10 years, is such a long time to be missing out on life and no sign of a cure or treatment in the near future. 1/4
March 4, 2025 at 12:15 PM
Reposted by Hana
mfairma.bsky.social
One of the contributors to this wonderful video, pwME Horace Reid, just passed. It’s only 6 minutes and affecting. Well worth the watch. His portion begins at 4:54. #MECFS #LongCovid
Discover M.E.
YouTube video by Hope4MEFibroNI
youtu.be
March 3, 2025 at 8:48 PM
Reposted by Hana
pehpunkt.bsky.social
menschen sterben an me/cfs.

#jederTagMECFS #MECFS #LongCovid #MEAwareness
Bleistiftzeichnung eines Zimmers mit zwei Fenstern, darin links ein Bett und rechts ein Tisch mit Stuhl. Draussen sieht man ein Haus und einen Baum. Am Himmel fliegt ein großer schwarzer Vogel. Auf dem Bett liegt eine schlappe Person auf dem Rücken.
March 4, 2025 at 10:03 AM
Reposted by Hana
hopefullizzy.bsky.social
This illness is often so scary and lonely, medically it’s like being in an entire ocean alone, desperately trying to tread water while doctors throw you a raincoat and half an oar but don’t address what happened to your boat.

It’s relentless💔
#MECFS #myalgicencephalomyelitis
January 20, 2025 at 11:48 PM
Reposted by Hana
neurostingl.bsky.social
"Ignoranz, Unwissen und Stigmatisierung können tödlich sein."

Das gilt bei #MECFS genauso wie überall sonst in der Medizin.

Starker Text von @janaxpetersen.bsky.social zu "Chronisch krank. Chronisch ignoriert."

www.arte-magazin.de/chronisch-kr...
Unterschätzte Qualen – ARTE Magazin Aboshop
Die Multisystemerkrankung ME/CFS gilt als schwerste Form von Long Covid. Ärzte und Kassen nehmen die Folgen kaum ernst, mahnt Autorin ­Jana ­Petersen.
www.arte-magazin.de
February 26, 2025 at 7:47 PM
Reposted by Hana
sabinehermisson.bsky.social
🖤🕯️ Faraz Fallahi

Mein Mitgefühl:

Mit Faraz' Familie und allen, die um ihn trauern.

Mit allen, die schwer krank sind und um ihr Leben kämpfen.

Mit allen, die unter dem dramatischen Mangel an medizinischer Versorgung, Forschung und Therapien zu #MECFS leiden.
RIP 24.02.2025 Faraz
February 24, 2025 at 7:30 PM
Reposted by Hana
anilvanderzee.bsky.social
1) Having #severeME and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live.

Most years, I see maybe one or two people, and many years I didn't see anyone

youtu.be/yLRateIQdzc?...
The prison of M.E.
Having #severeME and being homebound often feels like a prison. You're locked up in your home and your body, away from society, your loved ones, from the life you desperately yearn to live. Most years, I see maybe one or two people, and many years I didn't see anyone at all. I often get the question how do I get by and how do I get help, even though I don't really see or communicate with anyone. My health has somewhat stabilized since moving to a new and quiet place, and I can therefore do a bit more (hence the filming), but other than these changes, I'm still very much imprisoned by ME. So, like last year, I decided to document my life locked up in my home by ME to give a unique insight into my life with ME and how I spend the last year(s).  I hope you'll enjoy watching it. There are subtitles in different languages included, and there will be more to follow. Don't forget to share! 🙏👍♥️ Groetjes,  Anil  #MEawarenessMonth #MEawarenessday (which is tomorrow) #pwme #myalgicE #millionsmissing Subtitles: NL: Rob Wijbenga IT: Chiara Ginestra ENG: Anil van der Zee
youtu.be
May 11, 2024 at 12:29 PM