A community for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS). ME
Since Lemmy is small, this community also serves as a hub for common comorbidities of ME/CFS. Long COVID (Post COVID), POTS (Postural Orthostatic Tachycardia Syndrome), OI (orthostatic intolerance), MCAS (mast cell activation syndrome), and more!
For those who want an even more general community, check out [email protected]
Also please DM me I need to add some mods!
Rules: Instance Rules, No Ableism + No quackery or denialism. Empathy first, is a must to participate. No unsolicited advice.
Kreatin update
For all the two people interested in a Kreatin update. https://swg-empire.de/post/2801694
I think it actually helped me get a little bit better. I'm still bed ridden but I felt like I'm on a good trajectory. Friends and family also say that I seem to be a little bit more awake.
But it always made me pretty depressed about 1-2 hours after taking it. But much worse I started getting muscle cramps despite drinking lots of water. It got so bad that last night I feared that I wouldn't be able to sleep.
I'm going to stop taking it, look how I feel and then probably continue with a lower dose of 3 g per day.
For those with bad brain fog, what helped you?
I have embarrassing brain fog due to POTS and CFS caused by EDS. The onset of POTS and CFS was insidious which contributed to me having an extremely delayed diagnosis (12 years from onset). I'm on ivabradine for POTS and my heart rate is actually normal now, which I really appreciate, but the brain fog is still causing daily embarrassments and some days I can't even form a coherent sentence or process something directly in front of me. It's genuinely driving me nuts. Salt and fluids help a little but I'm still nowhere near my former self. Even my movement is slow like I'm underwater.
Pacing 101
cross-posted from: https://lemmit.online/post/5623716
This is an automated archive made by the Lemmit Bot.
The original was posted on /r/cfs by /u/Johannes_Keppler on 2025-04-11 08:11:54+00:00.
Anyone tried Kreatin?
I started a few days ago on 8 grams a day and since today with 3 grams of glucose on top. I feel strange. Jittery. With heat flashes. Mentally bad. All in all it feels like stopping to take antidepressants so I hope it's not somehow interfering with the Venlafaxin my doctor prescribed.
But it's the first time in a long while that I'm feeling anything from anything I tried so I will keep taking it a while longer.
Here's a study on the subject. https://www.deutschesgesundheitsportal.de/2024/06/03/long-covid-symptomlinderung-mit-kreatin-plus-glukose/
196 gets us
cross-posted from: https://sh.itjust.works/post/35700769
when you come to the conclusion you're rule, sleep doesn't come easily
For Germans: Petition for the future German government to make an awareness campaign for ME
Wir sammeln Unterschriften für einen offenen Brief, der an alle Abgeordneten der Union und der SPD gehen soll. Es geht darum, folgende Passagen in den Koalitionsvertrag zu bekommen: „Zur Sicherstellung der bedarfsgerechten Versorgung von ME/CFS und anderen Postakuten Infektionssyndromen e...
cross-posted from: https://swg-empire.de/post/2555919
Offener Brief an Abgeordnete von Union und SPD zur Aufnahme von MEcfs in den Koalitionsvertrag
Ich hoffe dieser offene Brief kann etwas erreichen. ME ist die häufigste Ausprägung von Long Covid. War aber schon vorher Jahrzehnte lang bekannt. Trotzdem wissen noch nicht einmal die meisten Ärzte, dass es existiert oder tun es als Depression oder andere psychische Erkrankung ab.
Einfach nur mehr Bekanntheit würde mir und anderen Betroffenen viel bringen.
Does oxaloacetate reduce ME/CFS fatigue?
Summary of the latest study on oxaloacetate, a food supplement found in nutmeg among others. The supplement is pretty expensive.
I've been taking 1000 mg per day for about a month and haven't noticed any change. I think I will raise that to 2000 mg when my current bottle is empty and then decide if I will keep taking it. Currently not very optimistic.
Mutual Aid Directory for Masking and COVID Tests
MaskBloc.org lists active Mask Blocs around the world. Free high-quality masks, COVID-19 tests and other equipment for your community. Mutual Aid & We Keep Us Safe.
cross-posted from: https://lemmy.blahaj.zone/post/22577442
The federal government’s work on long Covid has been fitful and disappointing. Now even those efforts seem to be nearing an end.
cross-posted from: https://lemmy.blahaj.zone/post/22652063
The gravity of the approaching long Covid pandemic was accurately forecast as early as 2021. Recent data from the Centers for Disease Control and Prevention reveals that more than 3 million U.S. adults have long Covid with significant limitations in daily activities, and more than 16 million have had the condition. A Brookings study found that long Covid has kept between 2 and 4 million full-time equivalent workers out of the workforce. The mainstream media has regularly featured disheartening stories of the biomedical establishment and society-at-large turning its back to the plight of sufferers and the widespread disillusionment this has caused.
In December 2020, the U.S. government’s involvement
How a promising triathlete was left bedridden by cruel disease
James Walton was aiming for the world championships when he was suddenly struck down by chronic fatigue syndrome. He is now calling for more research into ME
cross-posted from: https://lemmy.blahaj.zone/post/22652538
How a promising triathlete was left bedridden by cruel disease
I think we should describe it as Mitochondrial Energy (ME) disease when talking about ME for public education and outreach.
Everyone knows that the mitochondria is the powerhouse of the cell. And we know that ME significantly affects the mitochondria. So by unofficially renaming it to Mitochondrial Energy (ME) disease, it helps unfamiliar readers to understand the primary mechanism at a glance, without having to research it more. Easier public understanding can lead to better public image and more donors.
Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened
cross-posted from: https://lemmy.blahaj.zone/post/22601408
Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened.
:::spoiler Article “Highlights” The unwillingness to discuss chronic illness in these conversations is especially concerning when combined with the scepticism faced by long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness. Many report beingdisbelieved; shockingly, the then prime minister Boris Johnson scrawled “bollocks… this is Gulf War Syndrome” next to an October 2020 memo discussing long Covid and its symptoms. Anyone posting about their experience online is likely to be[ accused](https://www.th
If we can’t learn from errors, families relive tragedy for nothing
The inquest into my daughter’s death showed me that the system is almost entirely broken
cross-posted from: https://lemmy.blahaj.zone/post/22606663
If we can’t learn from errors, families relive tragedy for nothing
“The inquest into my daughter’s death showed me that the system is almost entirely broken
…
“What is the point of investigating avoidable deaths — of making bereaved families relive their trauma, of spending millions of public pounds — unless we are prepared to learn how to avoid similar fatal errors?
Dear Mom, Thirty years later, I finally understand. Do you remember the year 1994? You got sick when I was a child, and you weren’t ever the same again. At first, it was a cough and congestion But as days gathered into weeks, you spent more time in bed Why are you so tired, I asked myself. What happ...
The article of ME is featured on Wikipedia!
https://en.wikipedia.org/wiki/Main_Page
Although I have no idea who looks at the homepage. Still, every little bit helps.
The effects of the US election on Long COVID (and ME) research are disastrous
Warning, the following is possibly negative, but I think it’s fully backed by the facts:
I don’t have the exact numbers, but with 1.65 billion invested in Long COVID (most of which has been used up) the US government must have contributed over 50% possibly over 80% of all research funds ever invested into Long COVID.
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The NIH was finally starting to be more reasonable with the money they had left. They started taking input from post-viral experts and seriously including patients in the planning process. There was political will, among the governing party to pass some sort of guarantee for the next decade for Long COVID funding. (Likely, the moonshot wouldn’t have passed as is, but a watered down version would have).
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Now the US population has elected a complete trifecta (looks like house is near certainly going GOP although results are yet to be confirmed), to a party which has significant portions believing various covid denialist and anti-vaccine conspiracy theories.
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Trump h