I am 85% recovered from a Chronic Fatigue relapse. Which means I have recovered twice. Which makes me anomalous. Traditional medicine claims a cure of 6%, and functional medicine which combines alternative with hard-core science has been able to “cure” 60% of patients, but mostly in part. There are many others like me, but we are decidedly in the minority. A tiny minority.
But I am hiking the hard hills (cautiously), writing a steady two hours every day (hey it’s a start), and embarked on a spring cleaning routine, the contemplation of which at any time in the past three years, would have sent me into a tailspin of exhausted self-loathing. I still cannot contemplate giving a party (which I love) and travel is out of the question. I cannot publish.
The only thing that wasn’t affected was my curiosity. I could read, I could study, I could learn.
Early on, CFS/ME/Fibromyalgia – they are generally identified as lying on the same continuum – was considered mostly psychogenic, but it turned out that antidepressants helped only 5% of sufferers. “The yuppie flu”, “the worried well”, the contempt leveled at sufferers was searing and still is, if you cast your eye over the linked Reddit thread.
Then doctors began to collapse, were forced to revise their opinions and in order to crawl out of it, pushed every button and pulled every lever. No cure was found. Some things worked for a little while or helped a little going forward. Herbal and other nutritional supplements were found necessary by doctors with the disease – it is why complementary medicine can claim substantially more success than straight-up western medicine.
Finally, after thirty years of effort, there are trials using drugs originally aimed at other illnesses: the abortion pill, RU 486 might be able to reset the nervous system, mestonin, used for Myasthenia Gravis, helps with mental fatigue, Ampligen looked good at first, but no. Still no cure. Still no drugs. Still no effective simple test. Still no protocol.
Tens of millions of us suffer somewhere along the CFS/ME/Fibromyalgia continuum, including Lady Gaga, Lena Dunham, Cher, Stevie Nicks, filmmaker David Putnam, author Suzanna Moore, Randy Newman, the 10th Countess of Mar, Lauren Hillenbrand, and so on into infinity. Some estimate that we are among tens of millions of missing lives.
Further, it may be an epidemic about to soar. The Agency for Occupational Work and Safety recently reported that 43% of Americans consider themselves too tired to function at work. 97% carry least at one risk factor of fatigue, and 81% perform jobs where fatigue is a danger to others.
Jennifer Brea, a Harvard Ph.D. student fell ill mountain climbing at the age of 27, and after being dismissed by doctors, put together, from her bedroom, an award-winning documentary called Unrest, which premiered in 2017. This gave the disease profile. Last month, Jennifer announced that she had been cured by craniocervical surgery.
“..in my case, the circumstantial evidence strongly points to some structural defect the surgery resolved (e.g., relief of a squished vagus nerve, better CSF flow), but I put my money on the brainstem. Where does the cause of my PEM (if not all PEMs) reside? I can’t be sure but if it turns out that my PEM is truly gone, then I’d put the money, at least in my case, on the brainstem.” (PEM is Post-Exertional Malaise.)
Brea was initially diagnosed with a conversion disorder, which basically meant who the hell knows, but Brea says today, “the mechanism was structural. Its impacts were systemic.”
My mother bio-hacked her way out of schizophrenia by becoming an Adele Davis acolyte. I cannot imagine the discipline it took. She had no help, no one was thinking about curative nutrition at that time, much less the many other things she tried. But for her, exercise was core, she forced herself to become, slowly, arduously, a competitive golf and tennis player. She trained her mind, scheduled daily rest, learned meditation, and taught herself to speak fluent French in her 70’s. Wherever I moved in the world handwritten lists of nutrients would follow me and every new discovery was outlined in exhaustive detail. It wasn’t a complete cure, reality breaks were still part of her life but she was more than just functional. As a result, I was the only person I knew who would in every city, search out an immunologist who would test me for nutrient deficiencies. I believe that’s why I didn’t collapse completely when I fell ill. But for twenty years, I operated in a fugue state with maybe 65% of my energy. And then ten years ago, suddenly I was normal. I behaved as if I were normal with the predictable result: CRASH.
After I relapsed, as soon as I could sit up in bed and type, I studied. And a few months ago, a theory of everything coalesced. “First step,” I thought “what the hell, maybe this is psychological?” So I hired a therapist who had a practice in Los Angeles working with people with CFS and Hashimotos. Within a few sessions, we identified childhood triggers, and I began to apply behavioral modifications.
It didn’t really take. I mean it was interesting, but I’ve had seven therapists over the years, mostly because I was terrified of developing schizophrenia. All my neuroses have been fully disinterred and examined.
Back to the drawing board. Whereupon I read about the discovery by the Japanese who, given that their citizens will literally die from overwork (karoshi) put their backs into it and identified the malfunction of the Vagus nerve as the culprit.
They tested their theory by triggering Vagus nerve shutdown by challenging subjects’ cognition with a series of tests, pursued until the subject was exhausted and was unable to transition from fight or flight (sympathetic nervous system) to rest and recover (parasympathetic nervous system). In some people, not all, under extreme stress, the Vagus nerve which triggers the rest-and-recover system starts to curl up and die. This is a literal description and why surgery is sometimes called for.
I am going to radically simplify here: push your brain too hard, and your Autonomic Nervous System gets stuck on fight, flight or freeze. And then your body triggers hibernation. You become a bear in winter whether you like it or not.
Hibernation can take many forms. A list of the illnesses caused by ANS (autonomic nervous system) dysfunction is as long as your arm. The acronyms MCAS, POTS, EDS-HT, enhanced intracranial pressure, these are just a start. The body will do anything to make you stop and give it the relief it needs. In my case, the Epstein-Barre or mono virus, which most of us carry, activated. Also Herpes Simplex and the Cytomegalovirus, all of which I tested for. I had the mother of all flu for two years before I began to crawl out of it. Truly I have never been so sick. It was terrifying. Added to that, because of Canada’s bonkers health system, I had no GP. I went to emergency five times until they found me a doctor on an Indian reserve four hours away.
Once I discovered the Japanese theory, biohacking became relatively straightforward. I found herbal anti-virals from Dr. William Rawls, a physician who contracted Lyme, and built a practice from his discoveries, After two months the viruses were suppressed. I have been meditating for 30 years but I imposed a strict program which puts me into Theta or deep deep relaxation for an hour every afternoon. I slowly began to exercise, and if I felt PEM (post-exertional malaise), would force myself to take a long break. For two and a half years I was allergic to sugar, wheat, dairy, and chocolate, so I gave them up. I became ketogenic. I purchased a compendium of TCM (traditional Chinese medicine) herbs, innovative nutritional supplements that nourished my body, mushrooms, and minerals that optimized my brain and triggered Nerve Growth Factor. I am smarter than I was at the beginning of my collapse. Within three months, I was almost normal. I am almost normal. I can eat anything. I can hardly believe it.
It is a Wild Wild West out there in CFS/ME/Fibromyalgia land. An internist told me last week that in conventional medicine, no one knows nothing. There is a diagnosis code now, which means physicians can claim it on insurance forms. But again, few pharmaceuticals help, and none cure.
Individual physicians, many of whom have the illness have innovated protocols, most of which look like the one I devised for myself: super-nutrition, mindfulness, deep rest, a paleo diet, techniques to trip activation of rest and recover, and if necessary, surgery to free the Vagus nerve from its trap.
But the theory of everything comes from Dr. Sharon Meglathery, a psychiatrist and GP, who works in private practice in Arizona.
In 2009, Meglathery developed mast cell activation (MCAS), postural orthostatic tachycardia syndrome (POTS), raised intracranial pressure, chronic fatigue syndrome (CFS) and a host of other potentially disabling syndromes which she identified as lying within the setting of Ehlers-Danlos Syndrome (EDS-HT) or hypermobility.
She spent seven years researching, scouring forums, gathering data from her patients and those on the forums, reading into the scientific literature, experimenting on herself, and challenging assumptions held by the medical community.
“Early on, my broad medical background revealed that several commonly held assumptions about these conditions must be false. By letting those assumptions go, I was able to find a neuropsychiatric marker, dubbed CAPS, which predicts a higher risk of chronic illness regardless of hypermobility status which has stood the test of several years. From there, a lucky break revealed a set of candidate genes which pulled all of my observations together. The knowledge of these genes changed the course of my illness by presenting novel treatment options, and I expect will pave the way for new pharmaceuticals.”
The Vagus nerve is starting to receive popular attention as something that we all need to look after, to cherish, but some people are genetically predisposed to its malfunction.
Megalathery found that most of her patients operated as if they had grown up in an abusive family, even if they had not: their fight or flight instincts were finely tuned, they were hypervigilant, they had increased threat detection and enhanced stress response. And since nature likes to take with one hand and give with another, there are gifts that come along with an enhanced stress response. “If present in moderation,” says Meglathery, you can demonstrate “enhanced empathy (ability to read emotions in others), sensory sensitivity, superior pattern recognition/information processing, times of intense hyperfocus/obsession/special interests and unusual abilities (often in music, arts or abstract thinking).”
Twenty percent of us carry the CAPS mutation. This is not a small number. That is a market.
The finely tuned nervous system can also demonstrate “bursts of emotional dysregulation, dysautonomia, motor and sensory syndromes (hallucinations, dystonia, catatonia, cataplexy, non-dermatomal sensory symptoms, non-epileptic seizures, etc.) and inappropriate states of consciousness (fight/flight, freeze, shutdown).”
Further, these diseases cluster in families. Meglathery believes we intermarry because people with the mutation are attracted to each other. So you may find in such a family, CFS, heart disease, bouts of psychosis, autoimmune diseases, multiple sclerosis, eating disorders, bipolar disorder, gender fluidity, PTSD. Children may have ADD, Aspergers and sensory processing disorder. And there may be members who are massively successful, who hang the moon. In other words, if you can master your genes, you become super-human. There are two of these in my family, one ran the British General during the Second War, the other became the most successful gold miner of all time.
I can trace my mitochondrial DNA (matrilineal) through four generations. Most of the women and some of the men demonstrate negative aspects of the RCCX hypothesis, and some of the giftedness as well. What appears to come along with our genetic cluster, as a sweetener from nature, is seven longevity markers, with several of us surviving into the 100s and most into their late 90s.
And it isn’t just the CFS syndrome that is triggered by the CAPS mutation. Internet theorists are starting to suspect that mysterious illnesses like systemic lupus erythematosus, Crohn’s disease, ulcerative colitis, rheumatoid arthritis, myasthenia gravis, selective IgA deficiency, multiple sclerosis, MS, Parkinson’s, Graves, Hashimoto’s, ME/CFS, Fibromyalgia all turn up when your body just cannot handle another day in an adrenalin circus.
And what is the world right now but an adrenalin circus?
I admit I have had a lot of time to think over the past three years, but I believe Dr. Sharon Meglathery’s work is ground-breaking. Has she not cleared a wide road down which we may find the actual cure to life on earth? Is this genetic anomaly not showing us the next step in evolution?
“I believe that these genes, particularly C4 and CYP21A2 sit in the most highly mutagenic part of the genome because mutations of these genes provide novel ways of responding to ever-changing environments in terms of response to pathogens/brain wiring for C4 and stress response/brain wiring for CYP21A2.”
Are the people with CAPS and the ways they heal showing us how to best live? Do these food allergies suffered by the sensitive mean that some of our food is profoundly unhealthy? Can food become super-nutritious for everyone? Are the routines by which we spend our days counter-productive? Is our way of life killing us? Should we be exposing ourselves to endless waves of adrenalin and stress? Are agricultural and industrial chemicals and EMRs destroying our nervous systems? Are most of our illnesses the result of the ways we live? Are we maladapted? If we are to progress, to become smarter better innovators, do the 20% of us carrying the CAP mutation show the way?
The Economist published a long essay in their summer culture issue called The Curse of Genius, wherein they examined the plight of children so brilliant they lie in the top .1% of intelligence. Inadvertently they prove Meglathery’s hypothesis:
“Giftedness may even be linked with physiological conditions such as food allergies, asthma and autoimmune diseases, which sometimes go hand-in-hand with “sensory processing disorder”. For many exceptionally intelligent individuals, everyday stimuli such as a radio playing in the background, the colour or texture of food, a vibrant display on a classroom wall or a scratchy label in a piece of clothing can become almost unbearable. Because his brain function is so acute, Lorenzo’s senses are more than usually finely tuned, believes Hilary. “He can hear things that we can’t. He can find it impossible to do his homework in a room that would seem to most people completely silent.”
The secret to living to 900, as we did before Adam ate the apple, according to the Old Testament, may lie buried in the cure for the complex of diseases that Meglathery identified. Short form: increase rest, digest and recover. Super nutrition, exercise, connect, better sleep. Change everything.
I have had to take extreme action to cure myself. From twenty relatively successful years in Toronto, London, and New York, I moved to deep country, on an island regulated so tightly I live in a giant park. Our house is surrounded by an older growth forest, with a ravine and a couple of pristine creeks. Ten years ago I built a certifiable healthy house, with no off-gassing in any of the materials, even to the point that we have no drywall in the house. We eat organic, local humanely-raised meats. I have a vegetable garden. Jamie has built a spectacular garden around me, to the point where sometimes I feel as if I am living in a fairytale. Every step along this path was determined by whether something made me feel sick, or better. I sacrificed the glittering prizes of life in the passing lane. But this life is what my body and nervous system needed to thrive.
I think RCCX points the way forward. People suffering from the condition are our canaries. They almost certainly have gifts we can use. Perhaps the human’s next step is enhanced empathy, sensory sensitivity, superior pattern recognition, intense hyperfocus, and unusual abilities in the arts and a disconnect from the hyper-consumption living.
I spent last year in bed, with a relapse of chronic fatigue, from which I had believed I had completely recovered. If you ever get a chance to do that – and you probably will if you live long enough – rejoice, there is much pleasure to be found in extended rest. As well as anxiety, some terror, and bad FOMO. But since you (I) can get bored with misery, behind that was great politics, acres of books to read, films to watch, forums to observe, and thinking to do. Being ill, I thought principally about my illness, which I have packed around with myself for 30 years or so through New York, London, Bermuda and coastal British Columbia, where I found, finally, my health. I blame my mother. My matrilineal gifts are many, including among them long life, my mother and her aunt died at 96, their mother at 97, and a great aunt at 107. But illness or some kind of setting-aside-from-life was part of their lives too. They were Irish in origin, northern Irish, and a house still stands where 12 generations of them have lived and some still live. Somehow they hung on to home, no matter what.
I know the history of many lines in my family going back to 920 AD. But I wondered about those women in Ireland from the 1st to 10th century. Lots of long damp winters, where you stayed in by the fire and dozed all day, eating beans and, if you were lucky, bunnies. Probably not feeling completely well for months at a time. But through those long rests in a stone house in a cold country where freezing rain is the dominant weather feature, was born over 80 or 90 generations the longevity gene which I now carry.
We are or were all preoccupied with our health. When my grandmother went into the hospital at 97 for the last time, a small suitcase tipped and two dozen bottles of nutritional supplements rolled across the floor. “Was she always ill?” asked the nurse. My mother nodded. “Those old ladies go on forever,” she quipped to my mother, who too, carried suitcases of supplements when she traveled. As do I. I want to live to 105, reading and writing and shopping online to the very last day.
There is a genetic component to Chronic Fatigue/ME. No one really knows how it factors in, but it is mitochondrial, or female-based. Jennifer Brea, a sufferer like me, made a multi-award-winning film last year, called Unrest. It asks many questions, the answers to which may lead to a radical upswing in length of life.
I’ll be waiting. Possibly ill, but fully alive.