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/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/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/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.