The most helpful information during my Long COVID recovery

Understanding the neuro-immunological mechanisms behind ME/CFS was crucial for my recovery from Long COVID. And I completely changed my mind on recovery stories

A reminder that I’m not a doctor or researcher - just one person who has (mostly) recovered from severe Long COVID and ME/CFS, sharing my experience. Always ask your medical providers what’s right for you.

---

Last time, I shared my framework for recovery from Long COVID. Today I’m focusing on the foundation in that framework, and specifically, how you can build it for yourself. Resources at the bottom.

Focusing on the science

A few months into being sick with COVID-19, and then Long COVID, I was slowly coming to terms with my new reality. My condition wasn’t improving. None of the medications my doctor had recommended had worked. Specialist appointments were still months out, despite trying everything, and it was unclear if they’d have anything to offer. I was now severely disabled, fully dependent on care, in my late 30s. For now, I was left with a leaflet from my doctor, on “pacing”¹. It felt like a bad joke.

I searched for answers online, whenever I had a little bit of energy. I skimmed scientific papers, listened to interviews with medical experts, and read anything that I could find. I was desperately trying to figure out what was wrong with my body, and which medical interventions might help. It was exhausting—I had very little energy, and given the cognitive symptoms, could barely focus. But despite all of those research efforts, I didn’t find any answers. I did learn that the severe form of Long COVID closely resembles ME/CFS², a chronic neuro-immunological condition. I also learned that even leading experts don’t seem to have answers yet, and might not for years. I was holding on to hope, but barely so.

I had come across recovery stories here and there. They had always felt irrelevant to me, deeply unscientific. Misleading even. My bar to believe something could help was peer-reviewed research and medical trials, not the story of a random stranger on the internet. I’ve spent part of my career in charge of statistical trials at Tech companies. In Tech, we call those trials A/B tests, and the math is essentially the same as for medical trials (randomized, controlled, blind studies). So I know extremely well that individual data points, like a few people recovering miraculously, prove absolutely nothing. I figured that those people sharing their stories had been lucky to have gotten better, and then attributed their luck to god knows what³. Besides, all the recovery stories seemed to be selling something, and hence, by definition not credible (“Recovery is possible! Just spend $ on my program/supplements/…!”). I had very little energy to spend on research, as even that was exhausting, and so I had to be extremely picky about what I read. I kept focused on the science.

Changing my mind on recovery stories

My change of mind towards recovery stories happened when I hit peak desperation. I had done enough research to know that Western medicine just didn’t have answers for Long COVID yet. I also knew that it might not for a while, judging from decades of insufficient research for post-viral illnesses. I was at a very low point. I was in bed, had barely been able to move for days, my body feeling like cement. The feeling of suffocation in my cells was almost overpowering. A cardiac monitor had been glued to my chest, in an effort to get more data. The glue had caused a skin rash, it was itching. My legs were in compression devices, to prevent thrombosis. The devices were humming intermittently, a tight grip on my lower leg that was moving upwards. Even after months, I was still stunned. How was I in this position? How was this all happening, when months ago my life was totally normal? That’s when I finally did click on a recovery story.

Reading Johanna’s story ended up being a turning point for me. Her story was relatable, and she seemed credible - not selling anything, a PhD candidate. Her symptoms were similar to mine. Much less severe, but still. Her experiences with doctors and even with her friends were the same as mine, too. And she had recovered! She had advice! I was so excited. It gave me much needed hope. I followed her advice exactly, and I must have looked at her post dozens of times over the next months. I also started diving into more recovery stories. Ironically, after ignoring them the first months, I couldn’t get enough of them now. And to my big surprise, I found many of them really helpful (I’ll share more specific ones in future posts, as I dive into specific tools).

Looking for patterns

Now, after the first months of focusing on the science and on trying to figure out what was wrong with my body, I instead started spending all my energy on recovery stories, and how to get my body back to health again. I tried to distill what those recovered people had done to improve. I started looking for patterns across their reports. It turned out there were recurring themes. Whenever I noticed those, I tried things out, even if I couldn’t immediately explain how it would work. I paid very close attention to my body when I did. I ended up discovering a lot of practical tools that way, that had a real impact on the state of my body. (I listed many of those tools in my overview last week, and will share more detail in future posts.)

In addition to those tools, many of those recovery stories pointed me towards foundational information about the illness, which I now see as crucial to my recovery. One key resource here was the online program that Johanna recommended, ANS Rewire. I ended up doing the program, too, and found it very well researched and comprehensive. The author, Dan Neuffer, is a scientist by training and has recovered from severe ME/CFS himself. The program goes deep into the biology— the physiological, neurological, and immunological mechanisms behind ME/CFS and Long COVID, and, this is key, how I could impact them. It was well organized and easy to understand, breaking down the science. I could watch it from bed, in small increments. It helped me completely change my approach to recovery, and was a crucial piece to the puzzle for me.

A side note here: Before going through months of a debilitating mystery illness, it would have seemed insane to me to pay “some guy” on the internet for health advice. When I first encountered paid programs claiming recovery for ME/CFS, they seemed predatory. After all, ME/CFS is a debilitating, chronic, multisystem disorder, with low recovery prospects, for which Western medicine has no answers. Selling patients hope, if only they pay hundreds of dollars, seems inherently wrong. I learned a lot in the last year, however, and I now think about these programs in a much more nuanced way. I now understand why many of them exist. They do because on one hand, most doctors are very unhelpful, not having been trained in the condition in medical school (a topic for another time, but in short, there are historic reasons here, including a deep gender bias in medicine for the last century). And yet on the other hand, there actually is a lot of helpful information out there, and it’s very possible to recover (even if very difficult). Lots of people do recover. Some of those people then spend a lot of time condensing and organizing that helpful information into programs. Being on the tail end of my own recovery, and left with a deep desire to share the information I found, too, I very much understand that. I am deeply grateful to those people now.

The three types of information to look for

The types of information most helpful during my recovery were these:

• Knowledge on the mechanisms of ME/CFS, dysautonomia and related conditions, and specifically, how people can recover from these conditions

• Understanding how the body heals, in general

• Practical tools and advice

There are many ME/CFS recovery programs, of different flavors. Some are more scientific, some less - if you’re interested in doing one, I’d say do your research. 1. understand what exactly the program offers, 2. make sure it resonates with you, and it is what you need at this point in time, and 3. find credible references. If paid programs aren’t for you (I very much get that), I’ll recommend some other resources below, e.g. books, Youtube channels. Or you can follow along here. The point is - build your knowledge on the biological mechanisms of the condition, specifically the ME/CFS and dysautonomia part of Long COVID, as much as you can. To me, it was worth the time and energy, more than almost anything else I did during recovery.

I’d also recommend getting an understanding of how the body recovers in general, from any illness. This helped me gain trust that my body can fully recover, even with tissue damage and organ scarring from the initial infection, in my case. Even when at the time it certainly didn’t feel like I could fully recover, given how many parts of my body had stopped functioning. Learning about how the body repairs itself, and how we can help it do that, gave me much needed hope.

Below are some of the resources I’ve found helpful. See if anything resonates. You’ll need to find what works for you—maybe you find that below, maybe elsewhere. The key is to look for it, find it, and then start putting it into practice.

Resources

1) Knowledge on the mechanisms of ME/CFS and dysautonomia

• Online programs

  • ANS Rewire

  • Other programs: I’ve heard positive things about Gupta Program, CFS School, Dynamic Neural Retraining System, and the Re-Active Program (in German)

• Books

  • The Long Covid Solution by Dr. Carla Kuon at UCSF (University of California, San Francisco). Dr. Kuon also recovered from ME/CFS. I ended up being treated by her, months later, and she is excellent

  • Dan Neuffer’s book CFS Unraveled. I did his program so I haven’t read the book, but if you want to start with a book and you like a scientific approach, this would be my first try (pls let me know your thoughts if you do!)

  • Breaking Free by Jan Rothney. Take this one with a grain of salt - I haven’t read it in full. It seems much less comprehensive than ANS Rewire, and it felt a little condescending at times. I’m still listing it here because it’s been recommended by a lot of people, and, in my opinion, the approach and tools are helpful

• Other

  • I really like this 10-page overview of ME/CFS and Long COVID by Salome Fischer. Salome is a fellow Long COVID patient from Germany, and her write-up is intended as a primer for patients, as well as doctors. So if you need a short(ish) overview to share with your medical team, this is great.

2) Understanding how the body heals, in general

• The work of Dr. Andrew Weil at the University of Arizona. This book helped me understand how the body heals from illness, and gave me a lot of hope and some tools. Ignore the terrible title (I’m finding that extremely off-putting, personally). The book itself is actually not about “spontaneous healing”, but about creating the conditions in which the body can recover

• The work of Prof. Ellen Langer at Harvard, e.g. her book "The Mindful Body”

3) Practical tools, particularly recovery stories

My recommendation here is to find recovery stories that resonate with you, by people you can relate to, and see what you can take from their experience. And to look for tools and repeating patterns.

• The Long Covid Podcast by Jackie Baxter - one of the most comprehensive resources out there, with dozens of interviews with leading scientists from around the globe, as well as lots of recovery stories

• Suzy Bolt’s Youtube channel (Suzy has a very supportive Facebook group too, where lots of information is shared)

• Raelan Agle’s Youtube channel (same here re Facebook group)

---

I’d love to update my list with more resources. What information has been most helpful to you in understanding the mechanisms behind the illness? If you did a paid program, which one and what was your experience? What other resources have been helpful?

Overall, it’s pretty striking that the people behind the most helpful resources have almost all recovered from ME/CFS or Long COVID themselves. As long as there’s not enough research into these illnesses, the people who best understand them are those who went through it, and who made it to the other side. I’ve learned to listen to them.

Next week, I’ll dive into the three pillars of the framework, the practical tools. Where should I start? LMK what you’re most curious about!

All my best,

~ Nicole

Photo by Tom Hermans on Unsplash

1. Reducing or slowing down activities

2. Myalgic encephalomyelitis/chronic fatigue syndrome

3. The irony of this is not lost on me… here I am a year later, being a recovered stranger on the internet :)