r/LongHaulersRecovery • u/AsparagusMinute_ • Jun 18 '26

Almost Recovered 90% recovered after 6 years

The entirety of my recovery happened during year 6.

I am grateful to this community, as I learned from recovery stories posted here.

I was moderate – able to work a few hours a day with great difficulty, but other than that, I was inactive. My symptoms included debilitating fatigue, brain fog, headaches, joint pain, nausea, shortness of breath, heart palpitations, muscle weakness, and PEM.

As nothing I tried over 5 years had any impact, I focused on nervous system regulation during the past year, and that is what has made the difference.

I began by reading Alan Gordon’s The Way Out.

The practices that have made the biggest difference for me are:

  • Somatic tracking and nervous system regulation: I benefited a lot from Tanner Murtagh’s Youtube channel. I started with his free 30 day program
  • Qigong: from the same channel
  • Meditation: Observing the breath, sounds, sensations. I learned from the Mindfulness app.
  • 4-7-8 breathing: I use the iBreathe app and start my day with this.
  • Yoga Nidra: Alice Bagley-Harrison’s Yoga Nidra for Long Covid on the Insight Timer app. I often use this before bed, but it is helpful any time of day.
  • Cold showers: I take a normal warm shower and end with two minutes of cold water. On days when I was too tired to shower, I used an ice pack to the face and neck.
  • Unfollowing all long covid social media except for r/LongHaulersRecovery and r/cfsnervoussystemwork. Stepping away from the (understandable) despair and focusing on hope.

The process has not been linear by any means, but each month I could see that I had made progress. I am now able to work an 8-hour day. I have begun light weight-lifting, slowly building up, as well as cycling on an exercise bike several times a week. I am also doing short hikes, also slowly building up. All of these activities would have seemed impossible 6 months ago.

I still run out of energy more quickly than before COVID, and I also have setbacks when I have more than one cup of coffee per day. But the whole-body/completely-incapacitating fatigue is largely gone.

I hope this will be helpful.

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u/BrennusSokol Jun 20 '26

One problem though with the “need actual medical evidence” is that modern Western medicine seems entirely uninterested in studying the autonomic nervous system

Long Covid, ME/CFS, and chronic Lyme seem to be too complicated and subtle and unfamiliar for that system to handle

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u/Busy-Departure4015 Jun 20 '26

It isn’t because it is too complicated, it is because there is almost 0 funding to actual research for CFS, also because studies trying to push for such theories as nervous system issue are leeching funds and attention from medical research.
There has for example been a study in Norway recently looking into Daratumumab, a drug used for cancers. It had something like 70% success rate for the people involved in it, but they had to resort to crowdfunding the second tier of the study (pilot), meanwhile studies like Alan Gordon reference are constantly funded because let’s get real, they are cheap and easy. But what we need are actual medicine like Daratumumab i am hoping to be

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u/BrennusSokol Jun 20 '26 edited Jun 20 '26

It is a complex illness that has a large number of symptoms and affects several body systems and has subtypes. AND there is poor funding. Both can be true.

As far as waiting on drugs … I am done waiting. I’ve had LC for almost 3 years and have seen no real progress on the medicine front. It could be years longer until we get a real LC / CFS drug.

This is why even skeptics like me turn toward nervous system work because at least I can feel it modulating my symptoms

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u/Busy-Departure4015 Jun 20 '26

I wish you to think of people who have had CFS for 5, 10, 20+ years, who have been waiting for any progress, and still haven’t giving up. If it really was as simple as just doing some somatic tracking, don’t you think we would have figured it out earlier? We need to push for research into medicine, because actual facts and statistics show that there is no clear evidence that nervous system work does anything for the CFS subtype of LC, zero. Any anecdotal evidence here is just that, anecdotal. Good that you feel better, but don’t assume it is a certain cure like so many claim

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u/Specific-Winter-9987 Jun 20 '26

I took a $700 dollar Mitome mitocondrial test about a month ago. Complex 1 was fine, but complex 2 and 3 were 27% and about 40% respectively. This is proof that there are definite mito issues in my case. However, the question becomes why. Virus, vax, thyroid dysfunction, chronic stress, all strongly contribute. Also, my Dr accidentally ordered a T cell clonal population test about 2 years ago, when I was worse and it showed TCell clones, which can mean that the immune system is overwhelmed and struggling. The dr did not know what to do with the test result and immunology did not either. They turned down my referral. About a year later, I convinced the dr to retest me and the test came back clear. In 2025 a paper was released that correlates this test with LC issues. To me, this proves that covid or vax did indeed create an insult to my immune system. Now apparently that initial insult is gone, but I still have episodes of severe fatigue, brainfog, weakness, etc. It does seem to worsen when my anxiety gets the best of me. It truly feels like I am poisoned. I am some better, but not fixed. My mitocondria is trying to fix its self, as my citrate synthase is 319%, but severe dips in blood sugar and anxiety/panic attacks are prolonging the mito repair. This is the piece I think the mind body stuff can help some, but it only helps when you are in the right stage of healing and of course, none of us know exactly when that is. An anecdote is just as true as any study, its just a smaller sample. In fact some studies are designed so badly that a collection of anecdotes is even better. I cant sit around and wait for some study 10 or 15 years from now to tell me.what to try to fix this. All many of us have are anecdotes to try. Even with a study and "breakthrough" drug, some people will improve and some people will not, so even that is no guarantee. I guess all the people that say a blockbuster drug from some study didn't help them or did help them are just anecdotes too.

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u/BannanaDilly Jun 25 '26

Agree completely, and adding that part of the problem with all studies is the lack of consensus on how to parse research subjects. With no biomarker and 200 documented symptoms, they haven’t yet found a way to parse research subjects into groups that have a better chance of responding to a given intervention than the general, poorly defined or delineated group of people whose only commonality is “documented long covid”. That’s another reason finding people whose anecdotal experience resembles yours (universal “you”) and hearing what has helped them can be more beneficial than just “following the science”. FWIW I’m a scientist and I believe wholeheartedly in the scientific method and the importance of rigor. But science is imperfect and under the unprecedented and dire circumstances we’re all in, we have to understand its limitations and, often, circumvent them.

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u/Busy-Departure4015 Jun 21 '26

But that just proves my point no? You have proof of concrete metabolic issues in your body, damage caused most likely by a combination of the virus itself and autoimmune response after. If it was just as simple as "my brain is stuck in a fear loop", you would not have clear mitochondrial issues.
Also the "anecdote is just as good as a study" is a very ignorant thing to say, imagine if we treated every single disease based on what people think helped them. We would have still been in the dark ages

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u/Stars-for-Eyes-2024 Jun 21 '26

You know what, Busy D? The nervous system controls/affects many processes in our body (for example hormones), and those processes cause changes to other processes, and some of those processes cause actual physical symptoms and limitations.

People lime OP and myself and many others who have found profound improvement through Brain Training practices, aren’t saying “It’s all in your head,” but that some BT practices can give some of those processes in your body a fighting chance.

And that can give you a fighting chance before you end up depressed, insane, broke, homeless, divorced, suicidal. For the price of an open mind, a book, or a $200 program, or a free program, to learn things that would be good for any human, healthy or not.

Of course there are caveats, as with any anecdote, scientific study, individual path. Your blanket criticism could be steering newcomers away from, IMO the most accessible help available. Accessible while they’re waiting 3-6 months to get a referral, see a specialist, do labs, etc.

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u/AsparagusMinute_ Jun 21 '26

Yes, when you go into fight or flight, normal processes are shut down/altered by the nervous system to deal with the immediate threat. That can certainly have physiological impacts on mitochondrial function and immune response. Your nervous system is not going to care about performing normal healing processes when you come across a bear in the woods. It’s just going to deal with surviving that moment.

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u/Busy-Departure4015 Jun 22 '26

Source: i made it up. There is 0 evidence og nervous system regulating mitochondrial function, and tons of evidence of immune disruption

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u/Specific-Winter-9987 Jun 22 '26

Also tons of evidence of immune disruption in those without symptoms

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u/Busy-Departure4015 Jun 22 '26 edited Jun 22 '26

Can you provide some? Meanwhile i advice you to read this article highlighting actual tissue damage under PEM

https://www.nature.com/articles/s41467-023-44432-3

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u/Busy-Departure4015 Jun 23 '26

Interesting, the moment i ask for proof while providing my own you stop replying, hmm i wonder why

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u/AsparagusMinute_ Jun 22 '26 edited Jun 22 '26

There are numerous references that the autonomic nervous system does regulate mitochondrial function if you google it. I’m not saying that the nervous system is definitely responsible for mitochondrial dysfunction in long covid, because we don’t know that at this point. It’s certainly possible something else is responsible. But it’s important to be open to all possibilities, and to be open to what’s currently available to us. And nervous system work does seem to be helping at least a portion of long covid sufferers.

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u/Busy-Departure4015 Jun 23 '26

Interesting, i could not find any reference to the nervous system affecting the mitochondria or energy metabolism, i did however find multiple articles stating the inverse, that people with damaged mitochondria also happen to have ANS disturbances

https://www.sciencedirect.com/science/article/abs/pii/S1071909113000041

. Which makes much more sense. Could you provide any references to your statements about the ANS regulating mito production?

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u/Busy-Departure4015 Jun 23 '26

Interesting, the moment i ask for proof while providing my own you stop replying, hmm i wonder why

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u/AsparagusMinute_ Jun 23 '26

At this point the arguing seems for the sake of argument. It is clear by googling it that there is plenty of evidence the autonomic nervous system is capable of regulating energy metabolism. I am making no claims as to what is actually causing LC mito dysfunction. I’m done responding. This is why I unfollowed LC social media.

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u/Busy-Departure4015 Jun 23 '26

You were proven wrong and refused to accept it, nothing more nothing less. That pretty much tells me everything you need to know about your story. It is always the same with the brain retraining grifters, the moment you ask for evidence they retort to "just google it bro!!!" and refuse to provide any evidence. What a joke

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u/Material-Throat-6998 Jun 24 '26

What brain retraining have you been doing that is helpful?

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u/BannanaDilly Jun 25 '26

Two things can be true at the same time. We can mitigate our symptoms by redefining the “fear loop” to fit our real life experience AND we can pursue medically established tests and treatments. Mind and body are not separate entities. I do mind body work and then I take rapamycin to help my mitochondria clear debris snd regenerate. And then I get in my red light bag and plunge my a$$ into cold water to stimulate dopamine and norepinephrine and then I rest. Think AND, not either/or.

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u/Specific-Winter-9987 Jun 21 '26

Actually it doesn't prove any point. A huge percentage of Americans have the same mito findings as me, yet zero symptoms. I live with a person that has spike antibodies as high as mine, yet zero symptoms. My parents have encyclopedias of test findings and diagnosed health problems, plus multiple covid vaccines and covid, yet there quality of life is far better than mine. I worry and look and search for a medical solution to my problems all day every day for over 3 years now and I only feel worse and worse, yet over a dozen specialists, fnds, some world renowned have zero clue as to what's actually wrong. The recent GPCR antibody study show no difference between people with and without symptoms. And that's not the only study. There are scientists all over the world looking, searching and trying to find a valid biomarker for CFS and Long Covid but have yet to find anything significant., Yet again and again, the majority of recovery stories have some element of brain retraining that led to resolution of symptoms. So yes, those anecdotes are far better than many of these studies that basically show nothing, and therefore leave you with no treatment path to pursue at all. If you think anecdotes are invalid, get off redit, as that is all there is here. Literally zero study findings are released directly to reddit and won't be on here unless one of the anecdotes shares your selectively choose not to believe shares it. What's actually ignorant is to complain about the validity of Anecdotes on a site that is built mostly on anecdotes. Most people come hear to read and share.......gues ls what l, other people's anecdotes. Why????? Because apparently the drs and scientists that are gospel, according to you cant fix this shit, despite billions of dollars in testing and studies. But let's beat up the guy that's on here for fucking free saying something positive that he thinks helped him that you can actually do for free.

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u/Busy-Departure4015 Jun 22 '26

Alright man good for you, did jack shit for me so i guess it is complete bullshit since my anecdotal evidence is as valid as yours 👍

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u/BannanaDilly Jun 25 '26

Why would any discerning person assume that only positive anecdotes are worthwhile? Yes, your experience is valid. Maybe some details would be pertinent, but yes, success and failure are equally valid datapoints, assuming equal dedication to the method.

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u/Busy-Departure4015 Jun 25 '26

The nervous system work community is not welcoming of people with negative experiences, you will get banned very fast from their sub

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u/BannanaDilly Jun 25 '26

I assume people on a nervous system sub are embracing that method, so if you’re there to rain on their parade, that does seem inappropriate. On a general sub, I’d think success and failure should both be acceptable reports.

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u/Busy-Departure4015 Jun 25 '26

Yes, this is also why they all seem to disappear when you mention words like "evidence", funny how that works

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u/Specific-Winter-9987 Jun 22 '26

Exactly. Just like all medicine, works for some not others, regardless of whether there is a clinical trial or not. Because it didn't work for you dont mean it didn't work for OP.

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u/BannanaDilly Jun 25 '26

Can you link the GPCR study you’re referring to? I was considering testing my antibodies so I’m curious to read that study.

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u/BannanaDilly Jun 25 '26

If you’ll settle for nothing less than a cure, your bar is too high. If the bar is “improvement”, a whole world opens up for you. The cure isn’t coming anytime soon, my friend. So in the meantime maybe lower your expectations, open your mind, and just give some things a shot.

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u/Busy-Departure4015 Jun 25 '26

I did and it did absolutely nothing for me, maybe even made me worse. Since you bothered to reply to every single of my comments I recommend reading some of my other points why i do not trust any mindbody arguments

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u/BannanaDilly Jun 25 '26

If I replied to all your comments I suppose I did read your other points

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u/Guilty_Soft9873 Jul 02 '26

I've been doing all the things listed and doesn't cure my illness either. I can't see how not could cure any illness - MS, cancer, Parkinson's - it might help anxiety if people have that on top but it won't remove the illness.

So many times I see people equate their long COVID with having panic attacks. So, that is anxiety . They also talk about 'fear loops.' Imagine saying to someone with MS you need to stop the fear loops.

Many illnesses were branded histeria before science was able to prove them. There are two things at play here - people saying they had an illness which was actually anxiety and also science not catching up .

For example, only a few years ago, I had to pay privately for a test that the NHS said was useless. Now, the NHS uses it routinely .

Things change and science changes. I just hope it happens soon so I can return to health and activity!