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submitted 3 days ago* (last edited 3 days ago) by MicroWave@lemmy.world to c/health@lemmy.world

Summary

Post-viral fatigue,* a mysterious illness linked to infections such as Epstein-Barr, Ebola, and Lyme disease, has long been poorly understood.

Scientists are now investigating its underlying causes, including mitochondrial dysfunction, inflammation, and autoimmunity, while exploring potential treatments like enzyme supplements and repurposed medications.

Current studies are focusing on repurposed HIV drugs, enzyme therapies, and supplements such as Coenzyme Q10.

Identifying at-risk subgroups and uncovering the mechanisms behind fatigue could produce targeted clinical trials and new treatments within the next 1-2 years.


EDIT:

*Should be post-acute infection syndrome or myalgic encephalomyelitis instead (thanks @FundMECFSResearch@lemmy.blahaj.zone)

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[-] FundMECFSResearch 27 points 3 days ago

I hate when the media tries to “simplify” the name to “fatigue”.

There’s a reason the medical profession has abandoned the terms post-viral fatigue syndrome and chronic fatigue syndrome as names, in favour of Post-Actute Infection Syndrome, and Myalgic Encephalomyelitis

  1. They are extremely inaccurate names, these conditions can cause hundreds of symptoms and fatigue isn’t always one of them.

  2. It’s an incredibly minimising name when these conditions are known to have caused death, and can cause people to lose the ability to speak or digest in severe cases. “Fatigue” is something healthy people experience too.

But the media always loves “dumbing it down” to “fatigue”.

[-] MicroWave@lemmy.world 11 points 3 days ago

Thanks for the info. I've updated the post summary with it.

[-] FundMECFSResearch 6 points 3 days ago

very much appreciated. because the public stereotype of it being fatigue tends to worsen the problem.

[-] bjoern_tantau@swg-empire.de 5 points 3 days ago

Yeah, we've been training our family to call it just ME. I always know that a doctor knows jack shit about it when they starts saying things like "so then you felt sleepy..." It's even further removed from ME than calling it fatigue.

[-] flicker@lemmy.world 3 points 3 days ago

"Fatigue" is something healthy people experience too.

The amount of time I spend explaining that when someone has a symptom of ADHD, it isn't the same as what "everyone" has been dealing with, and it's extremely difficult to overcome.

It's a frequent occurrence in any ADHD space I occupy where outsiders will come in and accuse us of making a symptom out of "normal" behavior, or accuse us of "confusing" a symptom for the symptoms of something else.

I recently locked myself out of my house in the evening after my medicine had worn off. "Well, everyone does that sometimes!" Does everyone do it three times this year, incurring considerable embarrassment because you have to inconvenience someone with a spare key? Does everyone rack up considerable cost on the occasions when they couldn't wait for help to come and had to call a locksmith?

Sorry, I didn't mean to make this about me. I meant to call attention to the problem we seem to have as a society where random people diminish the severity of what someone is suffering for no real reason.

[-] FundMECFSResearch 5 points 3 days ago* (last edited 3 days ago)

I totally get it, healthy people love trying to relate, but sometimes it can negate our experiences.

“I’m tired too”

“I’m in pain too”

“I’m [x] too”

like I don’t think these comments healthy people make come from bad places, but they often dont really understand our problems tend to be orders of magnitude more severe than the “common meaning” of the word, because they have never experienced it. I mean I would assume the same before I got my illness.

[-] solrize@lemmy.world 4 points 3 days ago

I thought Lyme disease was bacterial (borrelia burgdorfi or some such) rather than viral.

[-] FundMECFSResearch 9 points 3 days ago

That’s because whoever wrote this has little clue what they are talking about.

What they are calling “long fatigue” is medically known as “post-acute infection syndrome” and contains hundreds of symptoms which don’t necessarily include fatigue.

It can be caused by both viral and bacterial infections, Lyme being one of the bacterial ones.

[-] MicroWave@lemmy.world 6 points 3 days ago

It is, but the article seems to conflate post-viral fatigue with long-term fatigue in the grouping:

Post-viral fatigue has long been poorly understood, and for many years was often dismissed as psychological. But this long-term fatigue with varying degrees of severity has been linked to infections ranging from Sars to EbolaEpstein-Barr virus and influenza, as well as infections with tick-borne pathogens such as the bacteria Borrelia burgdorferi, which causes Lyme disease.

[-] FundMECFSResearch 11 points 3 days ago

“fatigue” being in the name was one of the reasons it used to be dismissed as psychological.

But now, especially with the help of long covid, we’ve found a distinct clinical entity, with clear physical markings, Complement system overractivation, T-cell exhaustion, WASF3-caused mitochondrial dysfunction etc.

[-] MicroWave@lemmy.world 6 points 3 days ago

Thanks. I've updated the summary to reflect your info.

this post was submitted on 20 Nov 2024
79 points (100.0% liked)

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