ME/CFS

The traditional problem for me personally is that when I'm doing a good job of 'faking it,' with fecking bells hanging off (oops, slipped in to Father Ted mode), I feel like I'm a downright Superman dealing with my chronic illness, but of course... people around me tend to assume that's just me using my normal amount of energy / alertness. And that's even coming from people who've known about my issues since forever.

Which amounts to a recurring problem, in which strategically-speaking, 'faking it' for appearances is seemingly one of the worst possible things one can do.

Loads to unpack there of course, but... you guessed it, I'm tired and need to lay down for a bit. Lucky me, because some ME/CFS-sufferers can barely make it out of bed for the most basic of needs. ("not you, Grandpa Joe!") And its heartbreaking when that's happening to teens & twentysomes, their young primes being wrecked by this cursed syndrome of diseases.

cross-posted from: https://sh.itjust.works/post/59710353

I’ve got a cup of coffee and a dream to make it through this day.

cross-posted from: https://lemmy.world/post/45961044

Someone made a website with all the forms you might need for insurance and stuff in Germany. And they included a list of possible medication along with studies if they exist.

cross-posted from: https://lemmit.online/post/8176711

This is an automated archive made by the Lemmit Bot.

The original was posted on /r/cfs by /u/Hip_III on 2026-04-15 02:41:59+00:00.

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From the 1970s onwards, a number of studies by British researchers found persistent enterovirus infections in ME/CFS patients' muscles. These many UK studies are detailed in an MEpedia article here.

The CDC saw all this research coming from the UK, and in 1994, conducted an in-house unpublished study on US ME/CFS patients to see if they could find enterovirus.

But the CDC made a fundamental mistake in their study: the CDC tested ME/CFS patients' blood for enterovirus by PCR, and could not detect the virus. So the CDC concluded that enterovirus was not involved in ME/CFS. And from that time onwards, enterovirus was largely ignored in the US as a causal factor for ME/CFS.

British researchers, however, were aware that the virus was not to be found in the blood, and knew the virus lived the tissues, so they tested muscle tissue samples for enterovirus, and were able to routinely detect enterovirus in ME/CFS patients. But for some reason, the CDC did not follow this methodology.

So this set back enterovirus ME/CFS research in the US for decades, until Dr John Chia came along and published his seminal 2008 study where he detected enterovirus in the stomach tissues of 82% of US ME/CFS patients.

Source: Dr John Chia, Invest in ME International ME Conference, London 2009: Diagnosis and Treatment of ME/CFS Associated With Chronic Enterovirus Infection. Timecode 22:30.

Started watching Sailor Moon. Just about every episode is about demons stealing energy from people.

Resonates with me. No idea why...

cross-posted from: https://lemmit.online/post/7866644

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The original was posted on /r/cfs by /u/anonym5088 on 2026-02-21 10:22:35+00:00.

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It’s concerning that Wyller, a Norwegian pediatrician and ME/CFS researcher known for promoting a psychosomatic understanding of the illness, has received additional funding for psychosomatic research, including mind body reprocessing therapy.

At the same time, the Haukeland team studying daratumumab has received no direct government funding. Their pilot study showed promising results, and a new trial is now underway, largely funded by patients and their families.

That contrast speaks volumes about current research priorities.

ME/CFS patients deserve serious investment in biomedical research and potential disease modifying treatments. If you agree, please consider signing and sharing this campaign to help secure proper funding for the daratumumab study.

Someone made a game about ME (with much pacing and help) and put it on Steam. It's about to be released by the end of the year.

The author made a post about it on Reddit. It will cost £ 1.99. Wishlisting it will help with visibility.

cross-posted from: https://lemmy.ml/post/38596184

cross-posted from: https://piefed.social/post/1347621

Researchers believe they have developed the first dedicated blood test to diagnose chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), which has the potential to be a game-changer for millions around the globe who suffer from the debilitating condition.

cross-posted from: https://lemmit.online/post/6732711

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The original was posted on /r/cfs by /u/Senior_Line_4260 on 2025-09-03 18:16:06+00:00.

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New study from the Charité involving Prof. Scheibenbogen and others.

Hand Strength measurements were used to determine muscle strength.

Median Strength increase was 2,6kg (5,7lbs) on 30mg of medication.

The median heartrate increase in lying to standing was also decreased from 17 to 13bpm

Original article in German: 3.000 Long-COVID Betroffene informieren sich über neue Nikotinpflastertherapie

Via this Mastodon post (in German).

cross-posted from: https://lemmit.online/post/6598249

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The original was posted on /r/cfs by /u/dsnyder42 on 2025-08-17 16:06:35+00:00.

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Hello everyone,

I've created a new, open-source GitHub repository to help people navigate the world of ME/CFS research.

The repository, "ME-CFS-Research-Summaries," contains plain-language summaries of recent and important scientific papers on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The goal is to make this complex information more accessible to patients, caregivers, and anyone else interested in staying up-to-date on the latest findings.

You can find the repository here: https://github.com/Hanneseh/ME-CFS-Research-Summaries/tree/main

Feel free to check it out, use the summaries, and contribute if you have any expertise!

Show that to every doctor who didn't believe you.

geteilt von: https://lemmit.online/post/6041589

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The original was posted on /r/cfs by /u/MyYearsOfRelaxation on 2025-06-10 14:27:12+00:00.

cross-posted from: https://lemmit.online/post/6001404

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The original was posted on /r/cfs by /u/FilletOFish___ on 2025-06-05 14:02:53+00:00.

https://archive.ph/qMUDo

cross-posted from: https://swg-empire.de/post/3130289

ich🛏️🪧iel

Heute (10.05.2025) ist ME/CFS-Tag. Bin dankbar für meine Schwägerin die morgen für mich gleich zweimal demonstrieren geht.

Falls ihr euch fragt wie das Leben mit einer chronischen Krankheit ist könnt ihr you're just imagining it spielen.

I have moderate to severe CFS/ME and I've been using a Hypershell X exoskeleton to help me get about. It's not a medical device but it's designed to help people walk/run/hike/cycle further than they could on their own. A price increase was announced for the 20th of May (https://hypershell.tech/en-uk/blogs/news/hypershell-price-adjustments-coming-may-20-2025) so I thought I'd try to raise awareness of this product for anyone that might want to get one before hand.

I previously used two walking sticks for short distances and an electric wheelchair for anything more. I wasn't completely happy with the wheelchair and wanted something in-between. I was a bit skeptical at first but the Hypershell X does seem to deliver just that. There's a bit of a learning curve and I certainly did overdo it a lot in the beginning. After a month of getting to know it I definitely feel like it helps. Since spring arrived I've been trying to get out into the sunshine and it helps a lot with getting back upstairs. I've also been walking along my road a little. While walking I use 50-100% Eco mode (its less powerful mode) and for climbing stairs I change it to 50-75% Hyper mode (the full power mode not available on the Go X model). It works similarly to the pedal-assist on e-bikes in that it first detects the motion you're making then assists with it.

The urge to do even more with it is strong but using it during activities that can already be managed should be safer and have a clear benefit. It can easily be used with other walking aids. Sitting while wearing it is usually fine as long as there's room.

I have a referral link for $30 off if anybody would like it: https://hypershelltechglob.refr.cc/referral30/u/willgroom?s=sp&t=cp .

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.

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.

cross-posted from: https://lemmit.online/post/5623716

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The original was posted on /r/cfs by /u/Johannes_Keppler on 2025-04-11 08:11:54+00:00.

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/

cross-posted from: https://sh.itjust.works/post/35700769

when you come to the conclusion you're rule, sleep doesn't come easily