Lmst

https://youtube.com/watch?v=Ey5YlZ9Bpvo&si=APo-2bIR7D3rWoAv #mecfs #LongCovid #forschung #forschungsgelder #forschung #politik

Day 12 #ArtAdventCalendar • This #SciArt #anatomy & #symptomatology #embroidery, sensorium (2016), is about how hypersensitive my nervous system has become since the onset of #MECFS. I also used this as an album cover for my composition The Hum. Read more here: https://liapas.com/2024/03/15/the-hum/

In the centre of some bone white linen, there is a spine embroidery in thick satin stitch. Emanating from the spine are thick burgundy lines in an undulant oval shape. This oval is bisected across the middle. In the top half, there is a section outlined in burgundy filled with coiling blue lines and a similar section in the bottom half. The rest of the undulant oval is filled with fine coiling burgundy lines. The spine is very straight, the rest of the embroidery is very coiled and busy. Lia’s initials are stitched in fine thread the same colour as the cloth at the bottom right.

Dear #mecfs #LongCovid people, has anyone read the book “breaking free” by Jan Rothney? Thoughts? Asking for a friend.

#chronicillnessmemes #chronicillnesshumor #chronicillness #autoimmune #chronicallyill #spoonie #spoonielife #spooniememes #satire #cfs #mecfs #chronicfatigue #chronicfatiguesyndrome #fatigue

MyBodyIsTryingToKillMe.com - [woman stressing at computer desk] Local Chronically Ill Woman Forced To Choose Between Washing Hair And Talking To Husband - mybodyistryingtokillme.com

Trial By Error: Some Things I’ve Read Recently: Anil van der Zee on Sex, “Mold Warrior” Johnson, and a Rant Against the Word “Journey” By David Tuller

https://virology.ws/2025/12/10/trial-by-error-some-things-ive-read-recently-anil-on-sex-mold-warrior-johnson-and-a-rant-against-the-word-journey/

#mecfs #pwme @mecfs

@juchti

Für alle, die nur die ME/CFS Rede interessiert, sie fängt bei 1:13:13 an:

https://www.youtube.com/watch?v=l11Z6GB3LnU&t=4393s

#MECFS

'Sport ohne Ball' #FotoVorschlag
#Klettern. Fast 10 Jahre altes Foto aus einem anderen Leben. Dem vor #mecfs. Mein erstes Mal klettern draußen am Fels.
Wie sehr ich auch diesen Teil des Lebens vermisse…

#nature #sport #berge

Eine Frau, die auf einem felsigen Gipfel steht und in die Ferne blickt. Sie trägt Kletterausrüstung, darunter einen Klettergurt und einen orangefarbenen Helm in der Hand. Im Hintergrund erstreckt sich eine bewaldete Hügellandschaft unter einem bewölkten Himmel.

Leuk, kunnen we de komende tijd aan iedereen gaan uitleggen waarom we nog ziek zijn "want er is nu toch een medicijn voor?" #LongCovid #mecfs

Edit: voor wie het niet duidelijk is, de werkzaamheid van dit medicijn is twijfelachtig. Lees ook de toots hieronder.

Medicijn tegen longcovid gaf Jessica haar leven terug: "Het was een wereld van verschil" | Eva
https://eva.avrotros.nl/artikel/medicijn-tegen-longcovid-gaf-jessica-haar-leven-terug-het-was-een-wereld-van-verschil-1106

Source: insidestory1

#chronicillness #chronicallyill #autoimmune #autoimmunedisorder #spoonie #spoonielife #chronicillnesslife #fatigue #cfs #mecfs #chronicfatiguesyndrome #chronicfatigue

insidestory1 on Tumblr -
I think one of the biggest misconceptions about fatigue is that it's just a more extreme version of tiredness. Fatigue and tiredness are not the same thing. The biggest difference between them is that tiredness goes away if you rest, but fatigue doesn't. When you suffer from fatigue, your body keeps draining you even while you're lying down or sleeping. It's like a leak's been opened up somewhere and your energy keeps draining away no matter what you do. All you can do is wait and hope that at some point the flow will stop.

Day 11 #ArtAdventCalendar • One of my larger pieces, stars within, stars without (2017) illustrates the shift in my paresthesias from overwhelming to bearable. #MECFS #symptomatology #SciArt #embroidery

An embroidery on ochre linen, there is the outline of a head and outstretched arms. Tiny blue filigree decorates the face and hands and there are light coloured stars on the chest area and around the neck.

Mehrteiliger Bericht‼️

Q 10 - die ganze Wahrheit für #langlebigkeit & Krankheit

Coenzym Q10 – #Ubichinon vs. #Ubiquinol, Redox & #mitochondrien

Dieser Text fasst ausführlich zusammen, wie CoQ10 im Körper arbeitet, worin sich Ubichinon und Ubiquinol unterscheiden, welche #Cofaktoren wichtig sind und warum das gerade bei mitochondrialer #schwache #mecfs #mcas und oxidativem Stress eine große Rolle spielt. Die Inhalte sind neutral formuliert und nicht als individueller #therapieplanung gedacht!

Aber die kommentiert wenigstens nicht meine Ernährung was mich extrem triggert und essstörungszeug aktiviert
#mecfs #ed #barrierefreiheit

Woah. Das war das erste Mal, dass die Gutachterin von #MECFS wusste *und* entsprechend empathisch mit der Frau umgegangen ist. Da war am Ende große Erleichterung im Raum.
Jetzt ist Platz im Kopf für Weihnachtszeit. ☺️

Dr was a bit of a mixed bag. He at least knew what ME is, that's an improvement, and I have been referred to the local ME/CFS services which is also good.

I have to go through yet another round of blood tests to prove it's not something else, even though I've done that already.

Advice in the meantime "pace yourself" which doesn't help pay the bills. I literally have to tightrope walk bills and health at the moment.

Focusing on the positives for now. That's the only way through.

#mecfs

Off to see my new GP today. I wonder if they're going to be the 'prescribe painkillers, sleeping pills, anti-depressants and exercise' type, or if they'll actually listen to me when I tell them why those things don't work and try to find an alternative solution.

How much of my medical history am I going to have to repeat, again, and am I going to be gaslit about my own lived experience?

Don't get chronic illness folks, it's not worth it.

#mecfs

Heute ist die dritte Pflegebegutachtung. Wünscht uns eine kompetente Gutachterin… 🙈

#MECFS

The following is a long post about healthcare within the LongCovid crisis from the perspective of a chronically sick, mad, white trans femme.
I talk about medical institutions and health issues, so be warned.

#trans #MECFS #chronicillness #anarchism

Schweres #MECFS

RE: https://bsky.app/profile/did:plc:h23k6xrxot4xhgtahiefszch/post/3m7nzyhmkec2g

I wish I had spare energy to write up all the lifehacks I've done to make my living more sustainable.

For instance, my cat litter situation is super easy now. I got a Tidy Cat Breeze litter system and modified it.

https://www.chewy.com/tidy-cats-litter-box-system-breeze/dp/47104

It comes with little stone pellets you're supposed to switch out every few months. Instead of doing that, I mixed in wood pellets that made for animal bedding or pellet stoves.

The cat piss turns them into fine sawdust that falls through the cracks.

I do still use the plastic puppy pads like it came with (I use regular-sized puppy pads from the thrift store and cut them up), but the sawdust extends the life and absorbs smells.

As it appears, I just scoop the poop into my toilet (which is a bucket, also with sawdust – I don't have running water).

When I empty the cat box, I just take it out near the compost pile, dump the used sawdust from the tray, and toss out the puppy pad. The bottom of the box is open without the tray, so I just scoop around until the extra sawdust falls onto the ground. Add a scoop of new wood pellets, and the stone pellets last forever. (They help keep the sawdust from clumping and help the urine fall through.)

I think I can work out a system to not need the pad either, but I'm still thinking about it. The pad does help keep the tray clean so I don't need to use water to rinse it. That said, I don't use many pads at all.

When Midnight is outside in the summer, she hardly uses the box. I change it maybe once or twice all spring and summer. Now that it's winter, I've only changed it once. I expect to change it maybe 3-4 more times, at most, before spring.

It's really cut down on the work. The box stays clean, doesn't get stinky clumps of clay stuck on, and doesn't smell!

The pellets only cost $6 for a 40lbs bag, and I only need one scoop per empty. WAY cheaper.

I hope this can make it easier and more sustainable for you to have a cat.

#Lifehack #RVLife #OffGrid #CatsOfMastodon #MECFS #Solarpunk #Sustainability

Bald erscheint der Podcast zum Medizinprodukte -Skandal - erfahrt es als erste in meinem Newsletter, Anmeldung hier: https://www.martin-ruecker.com/newsletter. Außerdem: Neues aus der #PAIS-Forschung. #MECFS #LongCovid

#MECFS

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