Chronic pain, ME/CFS, "post exertional malaise", what is killing the mitochondria, wrong theories of the case, and the slide into the metaverse
A coming out of sorts in hopes that it might help others
I. The unwelcome stranger who never left
Twenty-five years ago, pain showed up in my life unbidden. At first it was along my right temple and down my neck but soon it became a dull ache throughout my whole body. I’ve lived with chronic pain every day since then.
Of course I thought it was only temporary. If I could just get more sleep or a proper meal or a less stressful job, the pain would surely go away. I did all of those things but nothing helped.
I spent about a decade trying every treatment modality available — allopathic medicine, neurologists, psychologists, psychiatrists, pain specialists, chiropractors, homeopaths, reiki, massage, nutritionists, yoga, meditation etc.
A chiropractor recommended a glandular supplement called Glucostatin that brought the pain down from a daily average of 7 (out of 10) to a more survivable 3. Homeopathy helped me to sleep better for a bit. Heavy anti-inflammatories (particularly indomethacin) help — but over time these medicines damage the stomach and kidneys. No matter how hard I hit it, some pain remains.
Pain is the lens through which I experience the world. Regular 40 hour jobs are impossible (I tried one once and had to call in sick every Friday so that I could sleep all day to try to bring down the pain).
Friends are curious for about 6 months and then life intervenes and interest wanes. Family sticks around for about a year and then there’s really nothing more to say. Dating is nearly impossible (long distance relationships can hide the disability for a bit and many have tried to be understanding but there are so many dreams, especially financial stability, that are simply not possible because of the constant blanket of pain).
So then one just enters the vast desert of pain unfolding in all directions as far as the eye can see. Pain warps all sense of space and time and one just continues on without a clear destination.
There is a brilliant memoir titled, All in my head by Paula Kamen that describes her life with chronic pain. She writes about attending a dinner party with someone who lost an arm in an accident and finds that this person’s life is not nearly as constrained as living with chronic daily pain (that limits everything).
In order to survive in the movement one must believe that everything we are experiencing is guided. Indeed, there are several silver linings to this horrifying experience.
I never tried opioids. In my case, I imagine they would have provided temporary relief followed by addiction and death.
Going through so many treatment providers also taught me the limits of both allopathic and alternative medicine. In my experience about 90% of both approaches are snake oil, and it’s really tough to figure out the 10% of providers and treatments that really help.
Because regular jobs were not possible I had to shift into more episodic work — speechwriting for a decade, and then academia for a decade (earning a masters and then a Ph.D. because school has always come easily to me).
When I stumbled into researching autism it was not a big surprise to me that doctors had absolutely no idea what they were talking about. And because my body would crash if I went to the beach or on an adventure, I spent nearly all of my time in the air conditioned library instead, slowly and steadily reading everything written on the possible causes of autism.
II. PEM and the death of mitochondria
So that was that. I lost a bunch of years to pain in the late 1990s, figured out how to bring the pain down a bit in the early 2000s, and got tired of sending good hours after bad in the search for a cure and so I just learned to live with chronic pain and muddle through.
Then, two years ago, I met a brilliant young academic who researches myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Wanting to understand her research and experience of the world I asked for book recommendations. She said that Sarah Myhill’s book, Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis: It’s Mitochondria, Not Hypochondria saved her life so that’s where I began.
To my astonishment, the descriptions of ME/CFS in the book matched what I had been going through for over two decades. In spite of tens of thousands of dollars and countless medical professionals, no one had ever mentioned ME/CFS to me before.
ME/CFS is poorly understood, stigmatized, little researched, and everywhere once you know what to look for.
At the heart of ME/CFS is what’s called Post Exertional Malaise (PEM) — an unfortunate name for a very big problem. The idea is that any extra expenditure of energy — physical, emotional, or mental — causes a crash (pain, extreme fatigue, and brain fog) that can last days, weeks, months, or even years.
In my case, a 45 minute hike causes me to crash for up to a week. But I’m one of the lucky ones. Jennifer Brea, who made a very good film about ME/CFS titled Unrest crashed for several years after a two mile walk home from a doctor’s appointment. It’s not just physical exertion that causes a crash — emotional and mental strains can produce similar symptoms.
This is the opposite of how our bodies are supposed to work. We’ve been taught through a constant stream of messages in school, the media, and from our doctors that exercise is essential for health and that exertion leads to a virtuous cycle of more energy, better mood, and more capacity the next time. But with ME/CFS, exertion beyond a certain minimal baseline creates a vicious cycle that leaves one worse off than before.
Having ME/CFS is like having a car that redlines at 10 miles an hour and then the engine begins to overheat and break down.
The reason why any extra exertion causes a crash is because of an underlying mitochondrial disorder (hence the subtitle to Myhill’s book, “It’s mitochondria not hypochondria!”). Mitochondria are the organelles inside our cells that generate adenosine triphosphate (ATP) that gives us energy. Little kids have heaps of mitochondria, over a lifetime it decreases.
Mitochondrial dysfunction is everywhere these days. J.B. Handley in his book, How to End the Autism Epidemic shows that 20% to 50% of children on the spectrum have an underlying mitochondrial disorder. One of the test cases in the Omnibus Autism Proceedings, Hannah Poling, involved an underlying mitochondrial disorder. ME/CFS is up 62-fold since the 1980s. And now a growing number of people are experiencing “long forms” of various illnesses — flu, pneumonia, Covid — and the theory is that these are all forms of ME/CFS that involve mitochondrial dysfunction.
It seems that something is killing off the mitochondria (or at least severely limiting its ability to function) across wide swaths of the population. The question is what?
It’s obviously not genetic because there is no such thing as a genetic epidemic.
The likely suspects include all of the toxicants I studied in my research on autism — ingredients in plastics and fire retardants, pesticides and herbicides, EMF/RFR, mercury and other heavy metals, and pharmaceuticals, especially vaccines.
Investigative journalist Hillary Johnson, who suffers from ME/CFS, wrote the definitive history of the disease, Osler’s Web. She also published a new book on ME/CFS in April that I’m eager to read.
RFK, Jr. just interviewed Johnson for his podcast. Johnson thinks ME/CFS is caused by a virus. The question becomes how this virus became widespread in the population. RFK Jr. thinks the vaccine program is the vector while Johnson is not convinced of that hypothesis. I hope that Johnson is correct because then a cure becomes possible (just find a way to kill the virus). But I’m also skeptical because if ME/CFS is caused by a virus, then a successful treatment should have been found by now.
What makes ME/CFS intriguing and very similar to autism is that the NIH, CDC, and Tony Fauci go to great lengths to prevent scientists from researching its causes. Although an estimated 1% of the global population has ME/CFS, the NIH devotes a paltry seven million dollars into ME/CFS research each year. Compare that with the seven to eight BILLION dollars the NIH spends each year on searching for the genetic causes of disease (research that by the way never yields any treatments). Total U.S. spending on coronavirus is now in the trillions of dollars even though it can be prevented and treated with about 20 off-the-shelf medicines.
The fact that the federal government is trying to thwart research into ME/CFS is a massive poker tell that it’s iatrogenic and discovering the cause would threaten the profits of a very powerful industry.
III. Wrong theories of the case
Learning about ME/CFS was like a Rosetta Stone that explained so much of my life over the last 25 years.
I spent years trying to figure out how and why I got sick and how to get well. I even wrote a memoir about it — exploring everything from psychology to alternative medicine to spirituality.
Every time I had just a little bit of money I would spend it on a new doctor or treatment. And every time I had just a little bit of energy I would expend it on an exercise program that I was just sure would lead to a virtuous cycle that would get me out of the woods. And every time, no matter how much effort and discipline I invested, my body would punish me through pain, fatigue, and brain fog for days, weeks, and months. Several times I even pushed through that hoping to finally break out on the other side and every time it made things much much worse.
But that’s because I had the wrong theory of the case. This was at a time when the “serotonin theory of depression” was everywhere, promoted by billions of dollars from Pharma, and it crowded out other ways of knowing and seeing the world. From the late 1990s until about 2010 or so, it seemed as if there was only one disorder — depression, and only one treatment — SSRIs, all other theories of health be damned.
Even when I was searching and searching for an explanation, with an open mind, it took twenty-five years, and a chance book recommendation from a friend, to accidentally find a theory of the case that fit all of the data.
Both Hillary Johnson’s and RFK Jr.’s theory of the case could apply to my experience. I was infected with Giardia during a semester study abroad program in Central America in 1990 and carried it with me for eight months before it was diagnosed and treated with Flagyl. It turns out that Giardia is often a trigger for ME/CFS and it can show up anytime in the 5 years after exposure (and then it never really goes away).
I also got a required Tdap before that trip and a bunch of vaccines in childhood. So given that vaccines are toxic and if vaccines are also contaminated with viruses/retroviruses (a possibility given the lax regulatory oversight in the U.S.) then that could have been the trigger instead.
It seems possible that ME/CFS could be autoimmune as well — a response to a virus and/or toxicants that continues even after the initial threat has passed.
IV. The slippery slope into the metaverse.
I’ve been chewing on this article from the NY Times Sunday Magazine for the past week — “Can Virtual Reality Help Ease Chronic Pain?” Apparently if one puts a virtual reality headset on a person suffering from chronic pain and provides them with an immersive experience of swooshing down ski slopes or galavanting through a forest (think Avatar), then the pain goes away for a bit.
This is not a surprise to me at all. In my experience, the best treatment for chronic pain is drama. Why do you think kids on the spectrum spend so much of their time living inside of Disney fantasies? Because drama is a great pain reliever (okay there are other factors too but that is likely one of them).
I spend huge chunks of each day searching for energy and pain relief. I wake up every morning more tired than when I went to sleep. And then I struggle to grab a few kilojoules of energy wherever I can find them — caffeine, protein, sugar if I’m desperate, sunshine is pretty good, heaps of supplements, and/or a short walk.
But Instagram Reels and TikTok are by far the best pain relievers — they are 5 second dopamine pellets that rats in the cage can press whenever they want. So when pain is high and energy is low I will use these sites to give my body dopamine that it cannot seem to get anywhere else. Obviously not a good solution.
The point is, I already live inside the metaverse because it’s where I find the greatest pain relief. Just because I’ve gotten good at it (50 million impressions on Twitter in 2020 before being banned, 1 million views a week on Instagram before being shadowbanned, and now making a living as a writer on Substack) does not entirely remove the embarrassment of being forced out of the real world into the digital.
My worry is that millions of people are in my same position. Bill Gates, Klaus Schwab, the entire Democratic Party, and the regulatory state are poisoning the f*ck out of the whole world via vaccines, EMF, and a wide range of poorly regulated industrial chemicals. That toxic assault likely causes widespread die off of mitochondria, triggering chronic pain and lack of energy, and people are already turning to the immersive worlds of social media, video games, and the metaverse (all three of those digital spaces will soon blend together) for energy and pain relief via a constant dopamine drip.
It’s a perfect business plan and it feels like an inexorable slide into a dystopia that will create ten trillionaires while enslaving the rest of humanity.
Engel’s great insight in the mid-19th century (that was the catalyst for the emergence of the modern left) is that poor people in Manchester, England were chronically ill because of the working conditions inside factories, not because they lacked moral character (which was the prevailing view of the medical establishment at the time).
The left has since forgotten this insight as they’ve now become bougie a$$holes who have Stockholm Syndrome and identify with the genocidal pharmaceutical industry.
Sarah Myhill’s great insight is that people who are chronically ill today — whether that is autism, ME/CFS, or long-anything — have no energy and live in chronic pain because something is killing off our mitochondria.
If we are going to survive as a species we need to figure out exactly what’s causing this mitochondrial dysfunction and permanently ban its production and distribution worldwide.
We also have to figure out how to heal and rebuild our mitochondria. Myhill’s book has some ideas but we still have a long way to go to find a cure.
Blessings to everyone dealing with chronic illness around the world. 🙌
Prayers for the freedom fighters working to bring down the toxic polluters including the genocidal pharmaceutical industry. 🙏
Please keep contacting the FDA every day to tell them to reject Moderna and Pfizer’s applications to inject mRNA into little kids.
In the comments, please let me know what’s on your mind.
(As always, please help me to improve this piece by pointing out any typos.)
Thank you for that beautifully tragic personal account that didn’t shy away from the true crushing costs like relationships etc... You’re a brave honest soul.
Thank you from the bottom of my heart. Currently a particularly bad pain day for me and having insight to that degree that people like yourself, that I so admire are also plagued with chronic pain breaks my heart but gives me hope for all of us and lately I’ve been struggling to have it for myself for some time recently.
Iodine has helped me too. A strict carnivore diet brought my pain down so much I got off all meds for a while but the recently war on meat and inflation has set my health back tremendously as I can’t afford to eat the way that I apparently have to because lack of money.
Toby I was just recently directed to this particular issue of your substack from one of your most recent issues. I feel a somewhat parallel situation to yours as I have been playing detective, researcher, etc... trying endless therapies and protocols to help my son and his long list of ailments (for a very long time). Long story short, I just came across this video in my research which talks about high dose thiamine being a useful therapy for conditions characterized by mitochondrial dysfunction. I immediately remembered this article and on the off chance you have yet to receive this unsolicited advice, here is the video.
My next phase of research is to look at the source of the video, Dr. Antonio Constantini.
Sorry if this info is redundant.