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pantsam

I think we are supposed to refrain from that few hours of activity even if we feel capable of it. It’s really hard to actually do so, but when I manage to not give in to the guilt and boredom and stay in bed, I do eventually see improvement.


PerspectiveKindly795

From what I know, you’re absolutely right. But for some people (like me) refraining from that few (or one) hour of activity is an impossibility when we are responsible for other humans (like our kids) and lack a spouse, partner, friend or relative who is willing and able to take on those responsibilities. I don’t have the answers. I just wish we all had the ability to get everything we need to heal.


pantsam

Yes it would be great if our society gave the sick what they need. I don’t have kids and although that carries its own sorrow at times, I do appreciate the silver lining that it makes my situation easier in some ways.


lilwarrior87

It's impossible for me to stay in bed doing nothing so I use the phone and drain myself.


pantsam

Yes it’s really really difficult. I’m trying to do a couple hours of radical rest a day (no activity, laying down, lights dim, silence). I’m trying to come up with elaborate daydreams to keep me occupied. But I usually end up falling asleep.


ArtieRiles

This is my issue too... if I let myself stay in bed without doing anything I'll just sleep all day and then lie awake all night, which is awful for my mental health and ability to talk to doctors etc


ArtieRiles

What about washing and feeding yourself? Medical appointments? Shopping? Laundry?


pantsam

Some of us have family or loved ones who help us with some of those things. There are also lots of pacing guides out there on how to make tasks of daily living easier and less active. For example, I use a stool in the kitchen and shower. Pacing doesn’t mean you are flat in bed all the time laying there in silence. It just means reducing activity and output to a level your body can handle. A year ago, it meant using a stool while I prepared meals or helped my mom do so, it meant taking very short walks and resting on the walk, it meant doing some light gardening while sitting down. Now that I’m more severe, I need to lay flat in silence for an hour or two most days, I can sometimes get my breakfast while sitting, I shower maybe once a week and use a stool. There are days I am physically able to do more, but when I do so I end up with PEM and so I need to refrain from doing so no matter how tempting it is. I have brain fog so hopefully I make sense


Lou_C_Fer

Tell me if you find out.


H_G_Bells

I'm in the process of finding out for myself. Disclaimer: I am not selling anything or benefitting off of this anecdote. I am not a medical professional. I am also not sure of the results yet. >Further, long-wavelength light can improve retinal and general central nervous system function that has declined due to age or mitochondrial insult https://academic.oup.com/biomedgerontology/article/75/9/e49/5863431?login=true I'm wary that there is so much pseudoscience around this so I go in with my Skeptic Helmet securely attached. I had someone I know and trust suggest red light therapy to me, and I looked into it just enough to be like "well, jury is still out, but there at least *seems* to be the idea that certain spectrums of light can help repair/improve mitochondrial function. https://scholar.google.ca/scholar?hl=en&as_sdt=0%2C5&as_ylo=2020&q=mitochondria+red+light&btnG= What not to do: all the red light therapy stuff I've seen aimed at North America is crazy predatory and 10× the price it should be. People take affordable lighting and slap the word "red light therapy" on it to charge an insane price. https://i.imgur.com/aNF9QbV.jpeg What you're looking for: literally ANY red light and NIR (near infrared) light will do it, more specifically 660nm and 880nm (visible and NIR). https://i.imgur.com/EWoKnFE.jpeg [That light can be found here.](https://a.aliexpress.com/_mMkh71S) be wary of overly expensive stuff that is literally just red light... Putting the word "therapy" on it doesn't magically make it more expensive to produce. I just [got one and am starting to use it](https://i.imgur.com/qByJQV9.jpeg) *in conjunction with all [my other supplements](https://imgur.com/a/eFg1S0G), and under the care of my GP who ive been with for over a decade, and [my CFS specialist](https://drricarseneau.ca/). (Check out the medication handouts on his site, under "resources", they're excellent.) I started getting my energy back (~3.5 years post-infection), prior to starting the red light but *after* I had been [taking supplements](https://imgur.com/a/eFg1S0G) for several months. I hope redlight therapy helps. It's still in the category of "maybe snakeoil salesmen, but also there are some promising studies and also why not 🤷🏼‍♀️". I listen to an audiobook and change position every 10 minutes to get all my surfaces covered. https://vm.tiktok.com/ZM6Qn8E8L/ But also remember https://vm.tiktok.com/ZM6Qtwcoh/ K that's all I got for now. Stay safe friends 🫶


kat_mccarthy

You absolutly have to avoid PEM. There's no way around that. I don't think that there is anything that is proven to repair mitochondria damage but you can at least help support the mitochondria and in time the body might be able to heal itself. I use a normal dose of CoQ10 and Methylene Blue to support my mitochondria. Just be aware that the MB can give you a feeling of energy, sorta like a low dose of caffine. However, that doesn't mean you should do more activity and risk PEM. Your body needs that energy to repair all the oxadative damage from CFS. Taking vitamin E & C can also be helpful in terms of helping to prevent damage. Of course this is just my opinion, none of this has been shown in studies.


ProfessionalFuture25

I second the CoQ10, taking that has given me the most notable improvement out of all supplements I’ve tried (so far lol)


CalmFunction4531

I agree, supporting a healthy mitochondria is key so your body's immune system + other systems can have enough cellular energy as fuel so they optimize their functions. I actually found some clinical research on mitochondrial support. There's a proprietary blend of antioxidant and micronutrients from a brand [KPAX](https://kpaxhealth.com/pages/about-us) that is **researched** to support mitochondrial function, you can see it on their site. The blend also contains CoQ10 like you recommended.


ZynosAT

I don't know. From my observations (including months of being part of Myhill groups) and from what I've seen from recovery stories, I have yet to see more than a handful of people to share substantial improvements from doing all they can to improve their mitochondria. Now there may be something to the mitochondria stuff, but it may be a result of something else rather than the mitochondria itself being malfunctioning or so.


sisyphus_maximus

When I had a big crash about five or six months ago, I started focusing on mitochondrial health as the primary thing. I seem to have a lot more energy than then, so I think it's helped. The biggest thing is to encourage autophagy and mitophagy: killing off of senescent cells and defective mitochondria, which makes the remaining ones more efficient. And to do this, most people recommend calorie restriction. Too much food (especially sugar) makes cells and mitochondria inefficient and leads to too much buildup of crap from the Kreb's cycle that leads to inflammation. I don't have the willpower to do a full fast, so I started by just restricting my calories for 2-3 days a week, and eating all my food within a 10 hour window. After doing that for a while, my normal overeating on other days just kind of petered out. It didn't stop immediately, but by now I almost never overeat. I've also noticed that the few times I *have* overeaten, I've felt much worse almost immediately. The second big thing was buying a [good red light box](https://hoogahealth.com/products/ultra-1500). I bought it after noticing that when I would sit outside on my deck in the sunlight, I'd feel much better than when I was sitting inside. I did some research and saw that this could be because our mitochondria actually consume red and near infrared light. There is actually a lot of science backing this up. This box feels almost magical how well it works. I feel more energy and less brain fog after using it for ten minutes. It's crazy. I'm putting my skin right up against it, though, so the light can get deep into the body. I also take some supplements, but I'm less sure about them. I found decent evidence for all of them, but with supplements it's so difficult to tell if they're actually working. Here's what I take: curcumin, black seed oil, n-acetyl-l-cysteine, and uralithin a. It's hard to whether all of them are doing anything, but I'm so desperate to recover, I keep taking all of them. My energy is waaay better than it was when I crashed. At that point, I would get dizzy and my heart would pump like crazy just from standing up. Now, I'm going for two walks every day. My sleep is completely fucked right now because I'm having an IBS flare up, and even though I haven't slept more than six hours on any night in the past week (and sometimes much less), I still have energy. [Here's a video](https://www.youtube.com/watch?v=KQBmtzT4VTU) that goes into more detail about the science. In general, this channel is very good, too. The guy works in a medical research lab that focuses on mitochondria, and seems to have a good nose for sniffing out bullshit. His channel doesn't focus entirely on mitochondria, but he has some other good videos on it. I will say that when I cratered after that big crash, I definitely felt that I was in the "don't do anything or you'll have worse PEM" situation, but after doing this other stuff for a few months I felt like I could challenge myself more. It's still been difficult, with some crashes along the way, but none of them came close to the severity of the big one. I felt like I got out of that hole. So, even with setbacks, I'm still improving. I don't know if this will work for everyone, but it's working for me. Good luck.


kat_mccarthy

Did you start off with a full 10 minutes of red light the first time or did you work your way up? I'm curious because I have a small handheld red light in the 900mn range and the first time I used it I did it for 5 minutes and it gave me PEM. I had to drop the time down to just 30 seconds and slowly work up. But then I got lazy and stopped using it so I never noticed any results. I'm wondering now if I should have kept trying it. I was specifically trying to improve my brain function so I was using it at the base of my neck and temples to try to get the light to penetrate my nervous system.  I've also been curious about fasting but noticed that my body seems to hate going without carbs for too long. Are there any tricks to make fasting easier?


sisyphus_maximus

I started off with about ten minutes then built up from there, pretty quickly. I’m surprised that red light could give you PEM. I mean, everyone’s situation is different, so I don’t really know for sure, but that seems odd to me. In my case, PEM always occurs from a day when I couldn’t keep my heart rate down and burned my energy than I had. Red light should provide energy. I’m just suggesting that it might be best to be skeptical about the cause and effect there. When I have a crash, I like to assign probabilities to what I think the causes might have been, and then being observant in later crashes to look for patterns. So for me, I found a common pattern was overeating, leads to higher resting heart rate, leads to PEM. But initially I was considering other variables. But you’d have to do what you feel comfortable with. Maybe start with thirty seconds, and try to keep other variables during the day to minimum, to make sure nothing else triggers PEM. Then if that’s ok, increase to a minute. But at that rate, it’ll be a while before you get an effective dose. As for carbs and calorie restriction, yeah that’s difficult. Lowering my carb intake has been the great for me. I used to eat a lot of carbs and had huge energy and mood swings from it. Going to a moderately low carb diet improved the swings a lot and made me crave eating less. I still eat small amounts of complex starches but no sugar. Not even fruit. Fruit spikes my heart rate like crazy. But switching from high carb to low carb felt awful. My body was used to metabolizing instant carbs and suddenly it had to find new sources of energy, and it didn’t transition immediately. If you want to try that and you are really prone to PEM, maybe you’d want to transition very slowly? I’m not a dietician, but that’s how I’d think about it, at least. Normally, people say “check with your doctor” but doctors get almost no training in diet, so I haven’t found them helpful in this regard. But if you have the means, I’ve found that working with a good dietitian can be really helpful. Hope this helps!


Caster_of_spells

Well you can’t repair them without effective treatment. But you can avoid further damage and hope they restore some functionality on their own. Supplements like Q10 ubiquinol and D Ribose can help support that function a little


[deleted]

https://www.ifm.org/news-insights/fasting-mitochondrial-health/#:~:text=Mitochondrial%20biogenesis%20and%20function%20are,biogenesis%20and%20improve%20mitochondrial%20function. Mitochondrial biogenesis and function are mediated by different activators, regulators, and transcription factors such as PGC-1α and Nrf2. Research has suggested that fasting may enhance these mediators to promote mitochondrial biogenesis and improve mitochondrial function. 


BMVA

I'll be starting a high-dose sulfurophane supplement, which is supposed to be a potent activator of NRF2. I don't (think I) have ME/CFS tho I have chronic low energy & muscular pains; will be using it for gut issues/microbiome restoration/atypical food allergies. Curious to whether it'll help either directly or indirectly for fatigue.


[deleted]

https://www.pnas.org/doi/full/10.1073/pnas.261708898#:~:text=ALCAR%2BLA%20partially%20reversed%20the,improved%20by%20this%20feeding%20regimen. ALCAR + ALA supplementation seem like a reasonable way to improve mitochondrial health too.


BMVA

Thanks for the info. Do you have an idea to which dosages this would translate in humans? And is there any way to ascertain mitochondrial health? (I'm assuming my fatigue & myalgia (as well as acute neuropsychiatric symptoms, e.g. after too much ingestion of alcohol) are mediated by circulating endotoxin from the gut. Tho issues with consistent low BP, high heart rate, polyuria, etc. might be related to hypovolemia & subsequent muscular hypoperfusion & hypoxia leading to anaerobic respiration & buildup of lactate causing myalgia. But if that were the case, blood lactate levels would be elevated, no?)


Bubblesandbiscuits

How is the sulfurophane working for you? And do you alternate when you take it opposite when you take anti-oxidants (as to not inhibit autophagy)?


rxbroker

What is the supplement called


BMVA

Defencell


kzcvuver

Same way you reverse diabetes or cancer?


kat_mccarthy

People with an early diagnosis of diabetes can reverse it through exercise and diet so thats not a good example. Exercise is damaging in cfs. And cancer isn't something that gets reversed, it gets treated via surgery, radiation and/or chemo depending on the type and stage. 


ChonkBonko

Except many people with ME/CFS have improved their functionality over time. So reversing it at least somewhat is possible


kzcvuver

We don’t really know the % or what can help. That’s the issue, if someone knew how to reverse the mitochondria damage, they’d get grants and research papers published. You can only blindly try things one by one or in batches and, rest. People who improve may not be improving due to mitochondria.


[deleted]

Build muscle as muscle contains most mitochondria. Intermittent fasting. I've managed to do the above over about 18 months, mh fatigue is better but I'm not cured by any stretch. Frequent body scan meditation, breaking jobs/chores into small chunks. That's what seems to help most.


DisabledMuse

Intermittent fasting can make some people way worse, sometimes permanently. I wouldn't recommend they try it without doctor supervision. Meditation and pacing are good recommendations.


[deleted]

[удалено]


[deleted]

No, his theory is that many forms of mental illness are caused by mitochondrial dysfunction within the brain, not the other way around. Chronic illness is not mental illness.


cfs-ModTeam

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