Recovery tools, part 1

Video/audio tools

Welcome to The Tonic, a light-hearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.

I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (known here as The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.

Wish list shout out!

Gifts? Yes please! Many of my readers have chosen to support my efforts here via the Amazon wish list in lieu of paid subscriptions (which could jeopardize my disability benefits). A big Tonic THANK YOU this week goes to Brenda C.

If anyone is interested in showing support for The Tonic, see below for the info. There’s something for every budget and any help is appreciated. (Note: please be sure to include a note with your gift(s) so I can include you in the shout out!)

The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. Anyone who does gets a 📢 in an upcoming post. Thank you!

This messy, imperfect, non-linear thing called recovery

A few posts back, I mentioned possibly doing a post on the tools that have helped me along my path to recovery* from Long COVID and ME/CFS. Several of you said you’d be interested in reading such a post. But when I thought about putting it together, it frankly exhausted me. It’s a lot of info and would make for a pretty beastly post.

And then I realized that I MAKE THE MOTHER-EFFING RULES AROUND HERE.

It’s me. I AM the bananager.

So, I’m going to chunk this monkey out into parts. How many parts? Who knows? Who cares? But I’ll link to the prior parts in all of the subsequent parts so no one will miss out on my obsession with information and accumulation of pseudo-wisdom.

*To be quite clear, I am not fully recovered. Not even close. This is how I had hoped it would go vs. how it actually has:

However, you see how the starting point of the reality line is at the bottom, and everything tangly and hard and frustrating is still north of that? (well, technically northeast, but you catch my northeasterly drift). That is the silver lining here, folks. I am better than I was a year ago, and loads better than I was two years ago, even if sometimes the line has veered back south(west) a bit.

You know how when you see a friend who has lost a bunch of weight and it seems really dramatic to you, because you haven’t seen them in a year or two? But to them or to their partner, it felt much more gradual because they lost like .2lbs a day or even a week sometimes? Well, my recovery - to me - often feels like the slow, plodding kind of weight loss (or what experts say is the way you’re supposed to lose weight if you want the changes to stick). It’s only when I realize that a year ago, I couldn’t get through a single day without resting or meditating that I realize how far I’ve come. Or when I finish a set of body-weight squats when I couldn’t even dream of doing a single squat two years ago that it hits me that I’ve been steadily heading north.

I have had my share of dips (the squiggly lines on the right) or adjustment periods, to be sure. But instead of getting super bummed out each time (and then fearful and anxious and increasingly symptomatic), racking my brain for what I did “wrong” to have brought this on, I look at it as data that helps me as I “bounce” my boundaries a bit. A little more exertion, a little more stress, a little more stimulus has helped me see that I can handle more than I thought, or it’s helped me realize I wasn’t quite ready for something new yet. Both are vital forms of intel on this path to recovery.

So, my friends, please take these tools with a grain of salt. Often the tools someone tells you worked for them will not work for you. As I like to say:

If you’ve met one long hauler, you’ve met one long hauler.

Believe me, I spent the first two of the last four years beating myself up over why something worked for so-and-so but not for me. What had I failed to do? Had I not followed the protocol to a tee? Was I not buying in to the main premise of a certain program with sufficient gusto?

It took time for me to realize that something not working was not an indictment on my efforts or some kind of failure on my part. Medical science still does not know what causes Long COVID or ME/CFS, except that the evidence points to these being disorders on a very wide spectrum, which means that it’s unlikely that there will ever be one treatment that works for all. Moreover, if you listen to the dozens of recovery videos or podcasts that I have (some of those will be listed as recovery tools), you’ll see that for the vast majority of folks who have recovered, it wasn’t one thing that did it for them, but a host of different things that eventually got them back to health.

With that in mind, as I lay these tools out in this multi-part series, I will try to be as specific as possible about what helped shift something for me - physically, mentally, or emotionally - that way, you can decide if what spoke to me might also speak to you. Not everything will. In fact, most things won’t. But what you consistently hear in these recovery videos is to never give up trying to find the things that work for you, because you are likely to hit upon the winning combination at some point.

For years, folks with ME/CFS were told that very few people ever make a full recovery. I think the stat is something like 5% actually recover, and it can take years. This was all before the boom in YouTube channels devoted to recovery and a proliferation of recovery and health coaching programs specific to these types of conditions. Many more people are recovering now. The thing to keep in mind is:

If recovery was possible for them, then it’s possible for you.

Print that out. Tape it to your bathroom mirror, your dashboard, your Kindle, your cat’s treat jar - anywhere you’ll see it frequently. (And then after a week, take it down and tape it somewhere else because you’ll stop noticing it after too long).

If you are still out there thinking, “recovery is NOT possible for everyone. I’ve had ME/CFS for decades and I’ve tried everything” or “the ones who are able to recover must not have had too much wrong with them to begin with,” let me say a few things to you. First, you might be right. Not everyone recovers, and for many, it’s not for lack of trying. The caveat I’d add is that folks who have been sick for decades were very often gaslit by medical systems telling them that exercise and cognitive behavioral therapy (CBT) would “fix” them. It’s understandable that many of those folks felt so dismissed and unsupported that they are not willing to give these newer recovery programs a try because they seem suspiciously similar to CBT, for example. But there are some key differences, and these programs are worth revisiting, even for the longest of haulers out there.

Second, look up Dr. Eleanor Stein. She recovered from ME/CFS after 33 years. That’s astounding! And inspirational. And hopefully shows folks that it’s never too late.

Third, for anyone who wants to step to me with, “well, if you’re recovering, then you must not have been that sick” - hogwash. I am not one of those long haulers whose doctors have never found anything wrong with them through testing (though let me be clear - most long haulers have not had access to the battery of doctors and testing I have, and they are still as sick if not sicker than I am). I have many, many findings - 3+ years of Epstein Barr virus reactivation, POTS, dysautonomia, small fiber neuropathy, T cell dysfunction, mast cell activation syndrome, mitochondrial dysfunction, oxygenation problems, hypocapnia, metabolic issues, and I even had a brain lesion that only started resolving last year. Not one of these things was merely suspected; all were verified by testing. If I can make recovery strides with all of this going on, then you most likely can too.

The last thing to keep in mind is, any bit of a gain is part of recovery. Instead of lamenting that I’m not yet at 95-100% yet, I celebrate that I am 5-10% better than I was six months ago (for example). If I never wind up making a full recovery, won’t I still be happy I got some bit better? Absolutely. I am not bed- or couch-bound anymore, and that has allowed me to savor so much more in life. These gains are hard-won and should be acknowledged, celebrated, and savored as a WIN.

Recovery tools, part 1

1. The Gupta Program

   I’m starting out here with a BANG, folks. The Gupta Program, like the many neuroplasticity/brain retraining programs out there for folks with these complex chronic illnesses, is a bit controversial within our communities. The idea with these programs is to begin to alter your thought patterns around your symptoms, stopping negative or fearful thoughts/beliefs and redirecting them, which in turn can help you create new neural pathways and calm your nervous system.

   Many who are suffering think these programs are saying that these illnesses are psychosomatic in nature, somehow “all in our heads.” For that reason, some programs are not marketed as brain retraining per se, because they are sensitive to the folks who get immediately turned off by the phrase. But in my opinion, folks are sometimes too quick to dismiss something they may not have taken the time to fully understand (ain’t that true of most things in life?!). Some of these programs, including Gupta, are backed by research. These programs also go to great lengths to keep repeating, “your symptoms are real. No one is saying they aren’t. But your brain is playing a role in keeping the symptoms going.” From the Gupta Program home page:

   When faced with a threat like a virus, stress, trauma, or something else, the brain sends danger signals to the body. But for some people, these signals carry on after the threat has gone, causing symptoms that can be addressed through techniques like amygdala retraining and brain rewiring programs.

   When we, as folks with life-altering and devastating chronic diseases, get stuck in a thought/fear loop of, “I feel like I’m dying. I can’t get off the couch. I must be dying. Why do I feel so awful?”, we teach our brain that there is something going on to fear. This keeps our brains and nervous systems stuck in a “fight-or-flight” state, which our bodies were only designed to stay in for brief periods of time in order to seek safety from acute threats. Chronic symptoms are our brain’s way of trying to protect us from a danger it believes is ever-present but is most likely over and done with.

   Virtually all of these brain retraining “gurus” have themselves suffered and recovered from ME/CFS (and some now have recovered from Long COVID). They took the tools that helped them to recover and they turned them into a program. There are many such programs out there - DNRS, Primal Trust, the RESET program, CFS Recovery Jump Start, I Can Thrive, re-origin. (If you are interested in one of these programs, but don’t know which one is best for you - they each take slightly different approaches - you may want to check out Lindsay Vine’s website. Lindsay is a CFS program navigator and coach).

   I chose the Gupta Program back in late 2021/early 2022, because I had heard that many people make a full or partial recovery using programs like this and, having just experienced a devastating crash in the fall of 2021, I was desperate for a non-medical approach. Ashok Gupta, the program founder, recovered from ME/CFS when he was in his college years. He comes across in the videos as warm and likeable (and slightly corny, but that’s also relatable).

   

   Ashok Gupta (from his website)

   The self-paced video modules really broke down the dynamics of what is going on in our brains and bodies. I learned so much from these videos and I connected a lot of dots between the material and what was going on for me. The real work comes in when you perform a series of daily rounds of essentially stopping and redirecting your symptom thoughts. While I could feel this process starting to work and some of my symptoms lift, in truth I wasn’t giving the program a full chance because I was still working back then at my big, hairy job, which left no energy for anything outside of work. I declared the program ineffective, which probably wasn’t fair. I did not seek the refund that Gupta offers because although I didn’t feel that it “worked” for me, I did learn a lot and took many tools from the program.

   Last year (late 2023), I decided to give the program another go now that I didn’t have work distracting and depleting me. I no longer had access to the videos and didn’t have the $400 to spend to re-join, so I pulled out my fat Gupta workbook (which is essentially a transcript of every video), and I re-read it. I did the daily “stops” faithfully for a few months, and I did start to feel a bit better. The program did not get me all the way, but it has great value to me as far as the lessons I learned and carry out many days, and so I include it here as a recovery tool because it has been helpful. And many have used the program to fully recover. I have considered that maybe brain retraining is the right idea and maybe I just picked the wrong program for me. I’m not quite ready to spend more money on a different program, in part because I feel that between all of the recovery tools I will write about in this series, I have absorbed a ton of great info and made good progress on my own. For now, I plan to just keep truckin’ along.

2. Raelan Agle’s YouTube channel

   I figured I’d keep going here with the people whose videos have helped shift my mindset. Many of you will already know about Raelan Agle’s vast library of ME/CFS and Long COVID recovery videos. If you don’t, they’re very much worth your time. Raelan had ME/CFS for ten years, pretty much for her entire 30’s, and she recovered slowly and on her own. (Her mother also had the illness and tragically died by suicide to end her suffering, showing both the genetic component of illnesses like these and also the level to which they can devastate the lives of sufferers and their loved ones). Once Raelan recovered, she vowed to be visible to those suffering in a way that she didn’t have access to when she was sick.

   

   Raelan Agle (from her website)

   Raelan features both interviews with folks who have fully or partially recovered, and also videos of just her discussing various aspects of recovery. She is warm, personable, funny, and often has her adorably fluffy pup Blue on camera. (It should not go unnoticed how important it is that these folks are likeable; when you can relate to someone, you are more apt to be influenced by their work).

   The thing that has been the most helpful for me from all of her videos are the threads I started to pull through all of them, mostly about what worked and what didn’t work. Her videos were also where I learned that almost no one recovers using just one tool, and that was a key mindset shift for me, as I would become so disappointed when I thought I had stumbled upon “the thing,” only for it to seemingly not be doing much. The other themes were that most often, medical interventions, medications, and supplements were NOT part of most people’s recovery formula, but that brain retraining and activity pacing (but not resting 100% of the time - that often backfires) usually were.

   Many have had to get off social media, as being in groups where sick people are talking all day about being sick can be quite a counterproductive bummer. I was glad to have met fellow long haulers through social media and have developed some wonderful friendships, but I now take those friendships into other apps where we can chat or talk one-on-one and lift each other up emotionally. Raelan also wrote a book, which I recently read. Here was my favorite quote from her book:

   “Health is never owned, it is rented, and the rent is due every day.”

   She also developed her own video series on brain retraining, which you can access on her website for a fee. If you’ve got the interest and the resources, it’s very much worth becoming a member of her YouTube channel for the ridiculous steal of $2.99/month, which gets you access to more videos and to interactions more directly with Raelan.

3. Dan Buglio - Pain Free You

   We’re on a roll here with video-based recovery tools, so let’s keep going. I learned about Dan Buglio and his YouTube channel, Pain Free You, when Raelan interviewed him on her channel. If you are new to Dan, their interview is a good place to start.

   Dan employs the work of Dr. John Sarno, who worked with the notion that virtually all pain - acute or chronic - is created in the brain. When you stub your toe, your brain sends pain signals in order to keep you safe, so that you are careful with that toe for the next few days. The trick is, sometimes our brain forgets to turn off these pain signals once the acute threat is removed. And our fear and rumination over the symptoms tells our brain that we must still be in danger if we’re still paying attention to it, so it keeps the pain signals going. Dan healed his own chronic back pain after reading Sarno’s work and consistently treating his symptoms with indifference, dialing down the fear and getting back to living his life. He eventually cured himself and he now records free daily videos that anyone can watch on YouTube. He also has a group coaching program for anyone who feels they need additional support.

   Although Dan does not like to call his work ‘brain retraining,’ that is essentially what he’s coaching: your symptoms are very real, but sending your brain messages of safety helps your brain turn off those signals that are keeping you in pain (or in ‘fight-or-flight’; Dan has many recovery interview videos that go beyond chronic pain and into fatigue, brain fog, and many other conditions). I believe his teachings are a form of brain retraining. I have also not always agreed with everything he says in his videos. For example, he tends to poo-poo things like journaling, somatic exercises, and trauma therapy, which he thinks just keeps you focused on the fear rather than moving away from it. Many of the brain retraining programs, such as Primal Trust and the RESET program, address trauma directly as a root cause of these chronic illnesses and symptoms, and I tend to agree that this could be a cause for many. Despite not agreeing with everything he says, I still find that there are great takeaways in every video he does, and I still listen to them most mornings. My favorite expression of his?

   “Think better than you feel.”

   He urges folks to treat symptoms with indifference, to engage with life, to stop teaching your brain that every activity is scary and will cause an increase in symptoms. These messages have been helpful for me to embrace, as I’ve expanded my social outings and even started to look to what my professional future holds. Here is a recent favorite video of his that I wanted to share (and yes, I know he calls the forsythias ‘hyacinths’ 🤭).

4. The Long COVID Podcast and the Hope & Help for Fatigue & Chronic Illness podcast

   Okay, so these are not videos, but grouping these here will round out the visual-audio recovery tools. First up, the Long COVID Podcast, started by a (you guessed it) likeable Brit named Jackie Baxter who was a fellow first-wave Long COVID sufferer and has recently recovered (within the past year). Jackie interviews a range of folks, including patients, scientists, doctors, naturopaths, and more. She has interviewed Raelan Agle on her own journey through ME/CFS illness and recovery, and at times, Jackie records just herself talking about her own reflections or recovery. While nothing I heard on Jackie’s podcast contributed directly to a mindset shift for me, her podcast was an important tool that kept feeding my hunger for hope in this whole process.

   The next podcast, Hope & Help for Fatigue & Chronic Illness, is a newer find for me and has not had a huge impact yet, other than I’m glad to have found a solid source of audio info on these illnesses for when I just can’t read another article. It’s produced by the Institute for Neuro-Immune Medicine at Nova Southeastern University near Miami, FL - home to the long-time ME/CFS and Gulf War Illness (and now Long COVID) researcher, Dr. Nancy Klimas. In fact, the episode where the host interviews Dr. Klimas was the first one I listened to and was very informative.

That’s a wrap on this first edition of Recovery Tools. Look for the next one in a few weeks, depending on my spoons.

Now stick around for…

🥳 The After-party 🥳

Announcements, links to articles and studies, recommendations and shout-outs, and miscellany joy and/or tomfoolery.

🖥️ Upcoming Solve M.E. webinar: Symptom Management and Patient Empowerment Through The Long Covid Wearable Study. Register here.

💰

Colleen Steckel: ME-ICC Info

with her take on the recent Long COVID Moonshot funding proposal:

Long COVID Moonshot - mischief afoot?

🦠 New Long Covid trials aim to clear lingering virus—and help patients in dire need.

😲 Trader Joe’s coming in with yet another contaminated product (fresh basil).

🥣 30 healthy toppings for your oatmeal. YUM.

😃 What I’m excited about this week? Heather Locklear, Daphne Zuniga, Laura Leighton reuniting for 'Melrose Place' reboot.

Jeff Kravitz/FilmMagic/Getty Images

🤦🏽‍♂️ Buffoons of the week: these ASSHOLES, caught on camera toppling rock formations at Lake Mead National Recreation Area. Just WHY?? (rhetorical, but do watch the video to the end - the woman who cites Darwin is my fave 🐒).

🏆 Winner of the week: This guy, Kitboga, who poses online as little ol’ grandmas to tie-up and frustrate scammers. Apparently, you can watch him doing this on YouTube. Awesome!

Kitboga (from Twitch)

🐈‍⬛ 💩 And finally, it’s this week’s Cat Dump. You get a break from my crew this week to enjoy this: Rescue Cat Nicknamed 'Thicken Nugget' Takes Up Swimming to Help Him Shed Extra Weight.

THICKEN NUGGET!!! Best cat name ever. Look at Thick go:

Vanderburgh Humane Society/Facebook

Did you enjoy this post? 🤗

**Disclaimer: I am (clearly) not a licensed medical professional. You should not rely on any information contained in this newsletter in making medical, health-related or other decisions. Please consult a doctor or other health professional.