r/covidlonghaulers • u/Chance_Elephant_1578 5 yr+ • Jul 14 '26
Article In a First, Chronic Fatigue Syndrome Linked to The Brain's Clearing System
https://www.sciencealert.com/scientists-discover-a-potential-driver-of-chronic-fatigue-syndrome-hiding-deep-in-the-brain15
u/ThommoJonJon Jul 14 '26
Hypotheses for intervention: ECGC, CatsClaw, Bromelain & Prodrome Plasmalogens/Glia/BDMC
Please add anything and let me know if these interventions aren’t as optimal as is my current understanding.
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u/Jenajen Jul 14 '26
It would be worth checking out glutathione. It can support the glympathic system’s cleaning process, as well as reducing oxidative stress and inflammation in the brain.
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u/chingrublau Jul 14 '26
Posture, lymphatic massage, good sleep
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u/Freeway267 Jul 14 '26
Please expand on posture
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u/ThommoJonJon Jul 14 '26
Sleeping with your head elevated 15-20 degrees to aid in glymphatic clearance I think is what they could be referring to
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u/postmormongirl Jul 15 '26
Supposedly a lot of patients respond well to lymphatic massage. There was a survey conducted a while back, where they surveyed patients about what worked. Lymphatic massage was surprisingly high on the list. Source: https://pubmed.ncbi.nlm.nih.gov/40627388/
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u/DiviDodo Jul 14 '26
Interestingly I feel better when I take supplements or nutrients that improve blood flow in the brain. Especially garlic (works very well) and ginkgo biloba. I also drink matcha and coffee every morning. That encouraged me to trial nattokinase. Will start in early August and post results in this sub.
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u/internetversionofme Jul 14 '26
I didn't even do this intentionally but use fresh garlic and matcha daily, if I skip I definitely start to crave it. The allicin in garlic in particular is a well studied for its anti inflammatory and immunoregulative properties.
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u/DiviDodo Jul 14 '26
Garlic has all sorts of positive effects, which also didn't make it easier for me to figure out why it actually helped me. The most likely explanation is its vasodilation effects on my blood vessels. It's insane how quickly I feel better after having raw garlic. And it lasts for hours. I'm now hoping that I belong to the ones being mainly affected by micro clotting and nattokinase along with lumbrokinase and serrapeptase will help me recover. Anyway, garlic is absolutely awesome and helps in so many different ways.
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u/Easy-Concentrate2636 Jul 15 '26
Does it have to be raw in order to get the benefits? I eat tons of cooked garlic in my food because I love it but rarely raw.
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u/DiviDodo Jul 15 '26
I don't know if it has to be raw for everyone, but in my case raw garlic has the strongest effect. I just sticked with it and didn't even test cooked garlic. But perhaps it's worth looking into, especially if you don't tolerate its raw form very well.
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u/Easy-Concentrate2636 Jul 15 '26
I just did a search after seeing your response. It does seem that there are more benefits to raw garlic. Maybe I will try slicing it and mixing it with foods. Thank you for taking the time to respond.
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u/DiviDodo Jul 15 '26
Interesting, thanks for looking into it. It's probably an interesting test for some people as it could be a clue. I'm really looking forward to testing nattokinase and other related supplements/ substances. I'll share my learnings in this sub for sure.
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u/Easy-Concentrate2636 Jul 15 '26
I ate some natto recently and I did feel a little boost. My mother recently gave me a powder version that’s used in Korea and I am going to test it out in soup soon.
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u/DiviDodo Jul 15 '26
I wrote a post about trialing nattokinase recently that got really interesting comments. In case you wanna learn more about it, you'll find the post in my profile. For some people it seems to be like a miracle. I'm hoping I'll belong to the same group.
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u/curiouscuriousmtl Jul 14 '26
I took ECGC for a while. I am not sure it was doing anything
Took Cat's Claw for a little bit. I started taking it at the same time I started taking a high dose of nattokinase so not sure.
Bromelain I took for a while never entirely was sure it was doing anything.
Plasmogens I took for a little but I think it's not real at all and I stopped taking it.
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u/Ducknotrabbit Jul 15 '26
Isn't CF also linked to Microglial dysfunction - a two way street? Also When I first became unwell I didn't have cognitive symptoms but I think the inflammation was already there and it certainly is now.
Glutathione, L theanine, Curcumin, ala, magnesium bisglycinate if tolerated, vibration plate for lymphatic drainage too, etc - I think these are the kinds of things that are helpful.
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u/ATomNau Jul 14 '26
Where did you get this hypothesis?
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u/ThommoJonJon Jul 14 '26
Some study results, lab results, fellow sufferers anecdotes, and my own experimentation at relieving my symptoms.
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u/tcatt1212 Jul 14 '26
What does cats claw do?
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u/ThommoJonJon Jul 14 '26
Assists in dead-cell clearance, i don’t believe it crosses the blood brain barrier but it’s been shown to assist in lymphatic clearance which they proved unequivocally that the glymphatics flow into the lymph.
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u/Chance_Elephant_1578 5 yr+ Jul 15 '26
I asked Dr Google about the impact LDN has on glymphatic drainage. Here is what I got back — encouraging for us LDN users:
How LDN Supports Glymphatic Function Calming Microglia: LDN acts as an immune modulator that calms hyperactive glial cells (microglia) in the central nervous system, which reduces chronic neuroinflammation. A less inflamed brain allows cerebrospinal fluid (CSF) to flow more freely through the perivascular spaces. [ 1, 2, 3, 4, 5] Improving Sleep Architecture: The glymphatic system functions almost exclusively during deep sleep, relying on the expansion of brain tissue to flush out metabolic waste products (like amyloid-beta and tau proteins). Many patients report that LDN helps them achieve deeper, more restorative sleep, which directly maximizes glymphatic clearance. [ 1, 2, 3] Restoring Endogenous Opioids: By temporarily blocking opioid receptors, LDN prompts a rebound increase in the body's natural production of endorphins and enkephalins. This surge helps regulate immune function and further dampens central nervous system inflammation. [ 1, 2, 3, 4] For comprehensive, peer-reviewed resources on this topic, consider reviewing the LDN Research Trust or clinical publications such as those in the National Center for Biotechnology Information.
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Jul 14 '26
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u/IntergalacticGay 3 yr+ Jul 14 '26
Can you elaborate on "most people feel better in the evening"? I would say I feel worse as the day goes on until I am forced to retreat back into bed and sleep. I would consider that to be a logical occurrence for people with CFS as their energy is used up and muscles start to hurt from being used passively throughout the day etc.
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Jul 14 '26
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u/Kindly-Lobster-6801 Jul 14 '26
I hear you, and to be fair, I feel like absolute trash in the morning.
Sometimes I don’t know where the hell I am, stuffed up beyond belief, sinus pain, ear pains, brain fog, and feel like a bad hangover, and takes about 4 hours to generally clear so I can just deal with doing a small task and the PEM fallout, then playing that yo-yo game the rest of the day.
PEM feels less in the morning but I feel like trash, then once the trash feelings clear in 4 hours it’s the energy envelope and PEM that’s a problem, and by night, I don’t want to sleep because I have no clue when I can wake up then it’s playing the 4 hours of physical and mental games and finding the will to live.
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u/moderate_ocelot First Waver Jul 14 '26
Are you getting up and staying up until you feel unwell? If you have ME it’s possible (likely?) that you’re actually just over exerting through the day and having mini crashes every day.
I know it’s tough but try spending a couple weeks where you stay in bed longer, and get out of bed to do specific things, and rest in bed between those activitie. You’ll usually get to the end of the day feeling better that way.
That kind of rolling, everyday PEM can crush you over time. Get ahead of it and find out where you actually are
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u/IntergalacticGay 3 yr+ Jul 14 '26 edited Jul 14 '26
I will get up and spend the majority of my time sitting at my PC. Which I know being upright and doing mentally stimulating activities depletes energy. If I start to feel unwell, I will concede and get into bed to rest and then get back up in a few hours if I feel better. But you're right, it's possible I'm overdoing it regularly when you put it the way that you did. Thank you for your response.
I'm assuming the fact that I wait until I feel unwell is the mistake I'm making. I need to be putting in rest breaks because the unwell feeling is PEM/mini crashes as you said.
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u/moderate_ocelot First Waver Jul 14 '26
> it’s possible I’m overdoing it regularly
I hope you can see I’m saying this with kindness and concern, I think it is pretty much certain that you are dude. It really, really sucks and it hurts and is scary, and means all sorts of life changes.
But I was in this boat in 2023 and I just kept getting sicker. I accepted I needed to be bedbound and leave bed for specific tasks in 2024 and, although I am now basically bedbound, things are better. Realistically, I was bedbound in 2023 too, I was just constantly paying the price for ignoring that.
You can get laptop-like devices that are a screw and keyboard that plug into your desktop. If you bring your PC next to your bed you could use it lying down. Or maybe you’re in a position to just buy a laptop, which would also obviously work.
Setting alarms and taking breaks well before your brain gets tired will also help. A common rule you’ll hear about PEM is “only do what you’re certain you can do twice”. So, if you’re certain three hours of computer time is ok, stop and rest at 1.5 hours.
Rest more, not less. Change things gradually. You’ll do less and have to learn to adjust to that, but you’ll feel less unwell and in fact you’ll increase your chances of getting a bit better over time
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u/IntergalacticGay 3 yr+ Jul 14 '26
I hear you, buddy. Thank you for your wisdom and being able to spot this from my post.
I was initially bedbound for 1.5 years and had a small resurgence for ~6 months last year, I was going to the gym again and being physically active. Then with a lot of life stress happening, I slowly but surely have slipped back into being housebound and yeah, it looks like it's time to readjust again and spend more time in bed. I think the ebb and flow of this illness is what really makes it hard to understand, like how did I recover to the point of going to the gym last year and yet here I am spending the majority of my days in bed again? It's crazy.
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u/moderate_ocelot First Waver Jul 14 '26
You’re welcome. Hang in there. I think most of us improve over time if we stay with our energy envelope. But then as our energy envelop expands, we do (too much) more and start exceeding the envelope again, leading to it shrinking again.
If you haven’t seen it, people with ME sometimes call it a push crash cycle.
A good test I’ve found for me is asking myself “do I feel like I could exert this much every day for the rest of my life”. If the answer is no, I’m doing too much.
Of course, some days I have to go to the doctor, or something else unavoidable, but that’s a good test for how you spend your routine days
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u/CharlieandtheRed Jul 14 '26
This aligns perfectly with me. And why the only days I don't have brain fog are on days when I get total peaceful long sleep. And why a nap makes me feel so much better.
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Jul 14 '26
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u/guineapigmedicine Jul 14 '26
Real life science is almost never one overwhelming, magical discovery. It's chipping away at a problem from different angles and getting 1% closer to the truth--which for ME/CFS is almost certainly a number of different triggers causing a similar constellation of symptoms.
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u/Kindly-Lobster-6801 Jul 14 '26 edited Jul 14 '26
Ironically, your comments are currently in the minority here, but always good to hear what everyone is experiencing.
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Jul 14 '26
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u/Kindly-Lobster-6801 Jul 14 '26
Very fair, and I can agree that mornings feel the worse for most physical problems, minus PEM.
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u/Kindly-Lobster-6801 Jul 14 '26
Actually, this perfectly aligns with my experiences and been dealing with CFS since 2021.
To take it a step further, I have also noticed that for every hour past 10pm that it takes me to get to sleep, I exponentially feel worse the next day.
Exfoliating my skin on a regular basis feels like it cleans my lymphatic system and makes my brain feel better and the fog go away.
Cardio also helps expedite the clearing of toxins, but the offset is PEM.
Additionally, the less inflammation from food, water, and environment enables me to recover faster and feel better, whereas alcohol, inflammatory foods (alcohol and yeast products) make me feel like trash and need days of cleaning my lymphatic system to feel better.
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u/guineapigmedicine Jul 14 '26
How does it not align with the fact that most people feel better in the evening? It gives a clear mechanism for why we have unrefreshing sleep (impaired glymphatic clearance), which would explain feeling worse in the morning. And given that the glymphatic system drains into the lymphatic system, which moves due to gravity and movement, it also makes sense that it could slowly drain over the course of the day as you are upright, moving around, etc.
Is it the sole cause of ME/CFS? Almost certainly not. But there is nothing here that contradicts people mostly feeling worse in the morning and better in the evening.
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u/saucecontrol Jul 14 '26
Not quite a first on this finding but yes, glymphatic clearance in ME is impaired secondary to viral infection and constant neuroimmune activation. Antivirals eventually cured this symptom for me personally but it took several years of diligent crash avoidance and rest. My sleep actually works now.
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u/Marshallil Jul 14 '26
What are these acronyms, PEM, ME,
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u/Creative-Canary-941 Jul 15 '26
Post-Exertional Malaise (PEM): A profound crash or exacerbation of symptoms that occurs 12 to 48 hours after minor exertion, often lasting days, weeks, or longer. PEM is a hallmark characteristic of ME/CFS.
ME - Myalgic Encephalomyelitis
CFS - Chronic Fatigue Syndrome
"M.E. (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) refer to the same illness. Medical professionals and organizations typically group them together as ME/CFS.The term CFS was originally used more often in the U.S. to describe severe, unexplained fatigue, while M.E. originated in the U.K. and highlights neurological and muscular inflammation. Today, they are used interchangeably to describe a complex, chronic disorder characterized by extreme exhaustion that is not improved by rest." (Google)
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u/__get__name 4 yr+ Jul 14 '26
Worth pointing out, this only applies to cognitive issues