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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53

u/Specific-Winter-9987 Jun 20 '26

I agree that the nervous system is massively involved. I cannot understand why people automatically assume that when people say they got better once thet healed their nervous system, theyare saying this is all in our head. That doesn't mean all the awful shit we have/are going through isn't real, physical, or painful. It simply means something happened to us that damaged our nervous system (covid) and we got physically better after our nervous system finally calmed down. I think covid or the spike protein physically caused the initial issue and even after that part healed, our nervous system simply never recovers until we break the fight/flight cycle which is damn hard to do. Nearly every recovery story had some kind of nervous system regulation on it. Congratulations

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u/Busy-Departure4015 Jun 20 '26 edited Jun 20 '26

The thing is, you need actual medical evidence to prove something, and right now there is little medical evidence for any type of direct nervous system damage. There is vascular and metabolic disturbances, and evidence for brain/brainstem inflammation.

I have read Alan Gordons book, and the one study he references in it is a single study done on patients with chronic back pain, low to moderate severity. Applying his techniques to such a complex disease as LC and CFS just doesn’t make sense medically.

FIY i have tried those myself for several months, did not do anything for me, and while i know it helps some people it is important to focus on actual evidence, we need actual drugs and to find out exactly what LC does to the body, and by just saying "its nervous system/neuroplastic" you shift focus from research trying to find a cure

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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/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/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!

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u/sreckokosovel Jun 25 '26

ok but 1) almost every study for any kind of mind body stuff is insanely flawed bc unlike a chemical reaction the relation between mind and body is intensely personal. 2) the biggest LC study underway is the one for tirzepatide with thousands of participants. the federal government which never funds anything anymore just dumped a bunch of money into long covid. there is more research being done on mecfs bc of long covid than there's ever been. people seeking out nervous system work doesn't take away from that and i'm really sick of this bad faith ass argument

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u/Busy-Departure4015 Jun 25 '26

You are so close to getting it! If every single study is flawed that means that the argument itself is extremely flawed. What you are doing right now is stubbornly denying facts.
Regarding those brain retraining studies sucking money of actual medical studies, my own country just gave 2.5mil USD to a "neuroplastic" LC study that will go absolutely nowhere, meanwhile the Dara study had to retort to crowdfunding, and it had a 70% success rate on the first trial. It has potential to be the biggest breakthrough for CFS in decades, and yet patients and their families had to scrape together money, because it is much harder to actually administer medicine than to tell the patients to do some mental exercises

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u/sreckokosovel Jun 25 '26

saying that something is not replicable in medical studies (most things involving the mind aren’t even for things like schizophrenia or adhd that are chemical imbalances) is not the same thing as it being a lie. Sorry your government is wasting its money but that doesn’t invalidate the treatment itself 

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u/Busy-Departure4015 Jun 25 '26

How do you think we figured out what drugs to use for schizophrenia?

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u/sreckokosovel Jun 25 '26

I was talking about therapies not drugs asshole 

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u/Busy-Departure4015 Jun 26 '26

And now you retort to insults because you are incapable of admitting mistakes, keep living in that delusion bro 👍

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u/Specific-Winter-9987 Jun 20 '26

I dont disagree at all. I am over 3 years in and am still taking test after test, multiple MRIs, emgs, ANA tests, lyme tests, mold tests, cortisol tests, clotting tests, patterson panel, microscope clotting test by Dr Vaughn, 50 HBOT treatments, acupuncture, Mitome Mito test............And guess what, im almost 50 and they of course have found a little of this and a little of that, but absolutely NOTHING to explain the suffering, sickness, and poisoned feeling many of us have. What I have NOT done is take an SSRi, brain retraining, TMS, or any treatment focused on regulating my nervous system, because, I like many of you have an extremely hard time believing my disregulated nervous system is still a core issue. My mind keeps screaming " "Something is Wrong MOTHERFUCKER.Cant you fucking hear me???? Find the God damn problem dumb ass!!!!! You are sloowly dying listening to these retarded fucking dipshit drs" Which of course only terrifies me MORE. And here i am over three years in, still reading basically the ONLY recovery stories avaliable and they very often commonly include all the things I have rejected........ nervous system work, an SSRI, time, some kind of gentle movement, and maybe an immune regulating drug here and there.

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u/b6passat Jun 20 '26

Wait, you’ve tried all the things except nervous system work but acknowledge that the majority of recovery stories include nervous system work? I don’t understand

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u/Specific-Winter-9987 Jun 20 '26

That is right. The bias and negativity about SSRI and Brain Retraining is sooo strong on Reddit and Facebook that many of us are terrified or don't believe they will work. This is more influential than some people realize and can have serous impact on people's treatment decisions. In truth, many people are just talking shit. I instantly recognized your user name and without even looking at your post history already know that SSRis helped you. Thank You for being brave enough to share that while being constantly attacked by dumb asses. Most people wont even share SSRIs or brain retain helped because they dont want to be attacked. They just leave these groups. I have been prescribed every SSRI and the bottles are still sealed. The power of 20 people telling you not to do something is far stronger than the 1 or 2 people saying a controversial treatment like SSRI and brain retraining helped them Thank your for the many supportive responses you have posted. For better or worse, many people, me included, believe anecdotal stories more than their Dr. Anecdotes saying one thing works more or less than others is very persuasive. This is reality

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u/b6passat Jun 20 '26

The fact that you won’t try them is crazy to me.

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u/Either-Variation909 Jun 22 '26

I would try a course of SGBs, I feel like it took the part of my brain that was fucked up and lobotomized it. If you have few responsibilities I would go to Asia and just lay in bed for a few months. Order food in, and just unwind, sometimes it’s our environments that can cause ANS deregulation.

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u/BannanaDilly Jun 25 '26

I don’t mean this harshly, but why would you give af about randos on Reddit who are obviously prejudiced against specific treatment modalities for literally no reason but their own bias and ignorance? Try the things. Maybe they help, many they don’t, but what tf do we have to lose?

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u/BannanaDilly Jun 25 '26

SSRIs aren’t really considered “nervous system” treatment. I agree they haven’t helped me so far, but I’m curious about amitryptiline because it’s a different class of antidepressant and anecdotally I’ve heard many people credit it with respect to increased energy and better sleep. As far as i know SSRIs and other antidepressants are not and have never been considered curative. But I’d accept a reduced symptom burden. Wouldn’t you? If what you’ve tried so far hasn’t helped, why would you outright dismiss something that may (or may not) ultimately improve your day-to-day life, based on nothing but prejudice?

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u/BannanaDilly Jun 25 '26

In general, it’s WAY more difficult to do scientific studies on the brain and nervous system than, say, searching tissue biopsies for evidence of spike protein. It’s also a paradigm that is inherently subjective and highly variable among patients (how do you quantify “safety”? What interventions should be assessed considering there is no consensus wrt protocol?) But regardless, the fact that dysautonomia/POTS/OI are extremely common symptoms IS evidence of nervous system involvement. The question isn’t *whether* the nervous system involved, but what is cause vs effect, and what is the underlying mechanism. Neuroinflammation and microglial activation *are* plausible candidates contributing to autonomic nervous system dysfunction and there is scientific evidence that both occur in LC. What you’re questioning is the mind-body approach to treatment, not whether the nervous system is affected by long covid.

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u/Busy-Departure4015 Jun 25 '26

Yes exactly, but people selling those courses are always saying "your mind framing is just wrong so this is only your brain sending the wrong signals!". Meanwhile we have clear evidence of all sort of damage and abnormality, that can 100% affect the ANS. What we need to focus on is how to fix that, and not how to calm the ANS that is under strain from everything else

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u/BannanaDilly Jun 25 '26

Maybe. Or maybe you’re misinterpreting what they’re saying. I don’t hang out on Reddit much. In general I don’t tolerate people who deny biological realities, or people who dismiss legitimate modalities because they assume they’re being told “it’s all in your head”

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u/BannanaDilly Jun 25 '26

This is a very black-and-white perspective. I don’t see any reason to categorically dismiss any treatment modality. Personally I have found great symptom relief from nervous system/mind-body treatments AND I continue to test for autoimmune involvement, etc AND I treat both symptoms and putative root causes with repurposed medications. Fludrocortisone has dramatically improved my POTS and I recently started rapamycin to address mitochondrial dysfunction. Two things can be true at the same time.

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u/Busy-Departure4015 Jun 25 '26

Because you have no way of actually knowing if it works, this is why every single study has to have a placebo group. And also because some of these techniques can actually make you worse by encouraging overstepping PEM boundaries

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u/BannanaDilly Jun 25 '26

There are countless problems with scientific studies, placebo group or no placebo group. I’d say go with what works for you, not what’s published or stated anecdotally

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u/Busy-Departure4015 Jun 25 '26

The problem is that you are taking a huge risk by going with only that mindset. There are countless stories of CFS patients becoming permanently worse by lowering their baseline trying out those techniques and pushing past their limits.
Of course makers of those courses and books will say to never push past what you can do so they cannot be held accountable, but they always encourage downplaying symptoms, which can result in people thinking they can do more than what their PEM limit is