-
DeCode Me Baby
“Barely slept last night after we announced funding for a £3.2m DNA study partnership that I Chair. Seven years+ of advocacy and lobbying final paid off.” Sonya Chowdhury, CEO of Action for ME – a leader in the effort
from Cort Johnson’s Health Rising https://www.healthrising.org/blog/2020/06/24/decodeme-genetic-chronic-fatigue-syndrome-uk/I’ve had Chronic Fatigue Syndrome since about 1990, or rather had it, because I don’t anymore. I used about 100 different therapies, supplements and interventions, then I recovered for ten years, relapsed after a series of deaths and recovered again.
The key to it for me was the calming of the glial cells in my brain, particularly the dark or dormant cells, which, through my own initiative I tend to wake up and treat like crack. So for me, meditation, low dose naltrexone, amitriptyline, country living, a peaceable mate, a happy family, all of these soothed my shadowy monster self. That established baseline. It is almost as if on this earth, that the key to any success or contentment is found where the forest is most tangled and dark.
-
Ultimate Sleep Hacking
I have had a disrupted sleep since I was a kid, but it didn’t become chronic until I grew up and assumed the anxiety of the adult, whereupon it became a real problem, requiring drugs that were hard to get. Doctors would be abstemious and hard-nosed about prescribing them, so I tried all their various recommendations, and even taught myself to meditate which took ten years. The result? I became so depleted, I contracted Chronic Fatigue Syndrome from a trio of the many herpes viruses which basically eviscerated my energy, and sent me into a quiet, a very quiet, too quiet life. The eight or nine herpes viruses are carried by most of us, but they need stressors to become active. I provided them with many stressors, moving countries, continents, chasing stories from dawn to dusk and parties from dusk to dawn.
We now know that 80 million Americans suffer from a variety of sleep problems and that there are 80 kinds of sleep disorders. By the time I was 40, I found that a tiny dose of an old-fashioned anti-depressant could deliver a night of sleep, and my life began to improve, radically and fast. But fifteen years of broken sleep has rendered me paranoid and worried, so last summer I bought an Oura Ring, which is the most sophisticated sleep tracker on the market to date.
Below I attach the Oura’s records of last night’s sleep. I have about 20 data points to consider. First of all, I know I was over-tired by supper-time, but instead of a nap, I powered through and by 10 pm, I was frazzled and it was hard to sleep – took me almost 80 minutes. And I woke constantly, through the night. My heart rate was high, my deep sleep low. Based on the data, I am more aware. I can make adjustments. The reason this is important is that the 20% of us (Please see my RCCX Theory essay, linked here ) who carry this sensitivity, which goes along with a more intense sensibility, can easily tip into complete sleeplessness. More and more people are recognizing that they are carriers and that their lives are impacted. Last month Justin Bieber confessed to the syndrome, his manifests as Lyme and it sent him to Christianity and marriage. Lady Gaga has it. Morgan Freeman, ‘Girl’s’ creator, Lena Dunham, Cher, and a host of others less famous. Ten million Americans and between 3 and 6% of the world’s population are sick with fibromyalgia, which is cousin to CFS.
Last week, a woman just south of me, Darden Burns, who had CFS for decades, killed herself because she hadn’t slept for months. Everything she tried worked for a while, then failed. Her life was heroic and makes it clear that, if you want to live, you must apply sleep hygiene. You must be conscious.
Next week Your Best Sleep Ever, an alternative medicine approach to improving sleep begins. It’s free and you can register here.
-
Reading this might Save your Life: the Vagus Nerve and the end to Mysterious Illness.
Elizabeth NicksonJun 3
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.
“I was shocked to learn that somehow medical education has completely missed an epidemic affecting so many gifted young people (mostly women), leaving the patients to fend for themselves.”
Dr. Sharon Megalthery
https://www.rccxandillness.com/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 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 French in her 70’s; every effort in service of training her mind. 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.
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 five years of serious analysis with subsequent check-ins, 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 plunges 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, still, 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.
“The genes of interest include CYP21A2 which codes for a crucial enzyme involved in the acute stress response (21 hydroxylase), TNXB which codes for tenascin, an important matrix protein implicated in EDS-HT and C4, a gene involved in the complement system and implicated in schizophrenia, CVID, MS, lupus and other autoimmune diseases. “
Dr Sharon Meglathery
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. This 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. Equally, 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.
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.
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 degrading 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. We can already see the culture moving towards the elements that form a cure. The stripping of harmful chemicals from our clothing, household cleaning products, cosmetics, the emphasis on yoga and meditation, the refusal of the super-culture’s demands, the focus on nutrition that heals the self and is both humane and nourishing of the planet, all these work to mitigate the effects of the CAPS genetic complex.
I have had to take extreme action. Since my diagnosis thirty years ago, my whole life was dedicated to finding relief. I moved to an island regulated so tightly I live in a giant park. Ten years ago I built a certifiable healthy house, with no off-gassing in any of the materials. We eat like hippies or Gwyneth Paltrow. Every friendship, every job I took was determined by whether something made me feel sick, or better. I sacrificed some of the glittering prizes of life, but the life I live now is what my body and nervous system need to thrive.
I think RCCX points the way forward. People suffering from the condition caused by the mutation 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, and the ability of intense hyperfocus. If so, our future is more garden than war zone. I say, bring it.
-
Reading this Might Save your Life
The modern physician should know as much about emotions and thoughts as about disease symptoms and drugs. This approach would appear to hold more promise of cure than anything medicine has given us to date
Hans SelyeI 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.
“I was shocked to learn that somehow medical education has completely missed an epidemic affecting so many gifted young people (mostly women), leaving the patients to fend for themselves.”
Dr. Sharon Megalthery
https://www.rccxandillness.com/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.
JENNIFER BREA; OMAR WASOW; UNREST “..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.
“The genes of interest include CYP21A2 which codes for a crucial enzyme involved in the acute stress response (21 hydroxylase), TNXB which codes for tenascin, an important matrix protein implicated in EDS-HT and C4, a gene involved in the complement system and implicated in schizophrenia, CVID, MS, lupus and other autoimmune diseases. ”
Dr Sharon MeglatheryMegalathery 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.
-
The Full Catastrophe
Over the weekend, Lena Dunham announced that Christine Blasey-Ford’s testimony triggered her fibromyalgia. This illness, which Lady Gaga also carries, along with millions of others, is barely understood. It is a kind of rheumatism, a disease of the nervous system, muscles, tendons and sinew that bears some resemblance to depression, and is often treated by anti-depressants. It is perhaps a somatization of depression, along with a maladjustment to massive structural change. Equally, as Dr. Sarah Myhill, one of the leading physicians of Chronic Fatigue and its attendant illnesses, globalization has brought home a whole bunch of new viruses which have overwhelmed our immune systems.
Women are 90% more likely to contract fibro, as my dear cousin calls it, as one would nickname her perpetual friend, her companion in life. It becomes that. As Dunham describes it, it is pain, pain in all its wondrous variations, a symphony of pain, an extraordinary mirroring of the shadow relationship between the body and the world.
I feel that this has a simple enough explanation. Has anything changed more than women’s lives in the last 50 years? Dunham and Lady Gaga have been lifestyle pioneers of their generation, and without moving to judgment on the value of their contributions, they have been impressively public in moving the goalposts of acceptable behavior for women, pushing the limits of expression of identity with a single-minded will.
Do I show my age or weariness when I wish for a consolidation of our gains? Two generations ago, women knew what to expect from life. Almost all of us spent at least part of our lives in secure marriages, in one or two cities or towns, knowing people in those towns birth to death. One hundred years ago, says Dr. Myhill, she would have spent her entire life in one valley in Wessex, eating the same food, encountering the same viruses, her life for the most part predictable, if not completely safe. Despite extreme boredom, her immune system, she states, would have loved her.
We need to catch up with ourselves on the most fundamental of levels, which is to say our bodies. I’ve moved seven cities and three continents in my lifetime, mostly on my own, mostly with very little in the way of support. I am confident that I can hack a living out of almost any wilderness now, and in my wake, and in that of millions of others, more or less accomplished, is a veritable symphony of achievement, independence, and freedom.
Blasey-Ford’s testimony last week, genuine or not, was a cry from that aching corner of women’s psyches that resonated all around the world. It felt real, it felt deep, almost every woman on the planet could see herself in that girlish woman, deeply credentialed, busted back to herself at a powerless fifteen. But that is not who we have become in actuality. Not at all. Aching we may be, but as a sex, in the last fifty years, singly and together we have hung the moon.
-
In which I change my life. Again.
I must have been a dozen people in my life – I even have a despairing name for myself, Miriam Myriad. I can adapt to pretty much any group of people until I’m bored, which sounds as an imperative similar to the Voice of God, whereupon I slip the harness and splash off in search of the next collection of interests. I do not believe this to be strictly ethical, though I will myself to not hurt anyone. It is a privilege not granted to many women without a lot of money, which I do not have, so I am profoundly grateful to a world where I can be so indulgent.
What tethers me to the earth and remains a constant is my body, temperamental, hyper-sensitive, tending towards exhaustion. I have a hyper-vigilant immune system, which I am always moderating with some kind of nutritional supplement or crazy-ass health program. To a pretty good result. I still have the ailments of a kid, still look young, no wrinkles, lines or folds. I can climb a mountain and swim the circumference of a small lake. This after years of exhaustion from working in the cities, clogged with dirt, dust, chemicals, and people. London, Paris, New York, Toronto, wherein I spent my time when not fighting for survival, figuring out how to get the hell out of Dodge.
Twenty years ago, I moved to the country in part because my body could not handle life in the cities. I live in a meadow, crossed by creeks, in front of a forest which hasn’t been touched for about 40 years. My water is from a well 200 feet deep and artesian. It is so alkaline, I could sell it. It has all the right minerals in all the right proportions. There is no cell coverage in my meadow and forest, my smart meter is 100 yards from the house. The house is rammed earth, materials with minimum off-gassing were used in construction, no dry-wall or paints. Wood stains were enviro-certified. It is a healthy house, as these things go, with geothermal heat and green roofs. With all this accommodation of my sensitivities, I was able to work hard, became reasonably successful, met a charming man who lives with me now, and thought it was over, I’d done it. I had turned myself into a normal healthy woman.
Then I relapsed.
-
Serge Faguet and Sean Parker, the nerd-fascists who would be God.
[epq-quote align=”align-center”]“[We will] live much longer, more productive lives”: “Because I’m a billionaire, I’m going to have access to better health care so … I’m going to be like 160 and I’m going to be part of this, like, class of immortal overlords. [Laughter] Because, you know the [Warren Buffett] expression about compound interest. … [G]ive us billionaires an extra hundred years and you’ll know what [true] wealth disparity looks like.” Sean Parker [/epq-quote]
I am an enthusiastic bio-hacker, which puts me into the crazy-ass category for my sex and age and profession, but I watched my mother cure her schizophrenia with diet, exercise, and nutritional supplements and that left an indelible stamp on my psyche. I was the eldest child, and a girl, so I spent my early life up close and personal with the vagaries of a diseased mind. Which made me admire her achievement all the more, I mean by this full-on deep respect. And it triggered my attempt, once given a diagnosis of Chronic Fatigue Syndrome, to take my undiseased mind and see if I could not only improve its function but use it to heal a disease the recovery rate of which is around 12%.
Turns out I could. I have radically improved my sleep, my pulse-ox, turned around my blood lipids, hacked my hormone levels. My liver and kidney markers are that of a 30-year-old; the universal response of a doctor when they read them is raised eyebrows. My mind is more plastic and agile than a lot of people my age because I know which combination of nutritional supplements taken at which time works for me; I can race through policy papers that would have killed me twenty years ago. I’ve dipped my toe into nootropics, but tend towards herbal mind enhancers like low-dose lithium and Bacopa. Lion’s Mane alone turned my memory into a steel-trap, nothing is lost. Ever. I even nebulize Glutathione (I used to smoke) because I believe it not only helps my lung function, it also prevents brain and eye aging. I am yearning to try low-dose Psylocibin or LSD. And if I can figure out how to get an IV pole and infuse myself with vitamins, I bloody well will.
I’m 32 and spent $200k on biohacking. Became calmer, thinner, extroverted, healthier & happier.
But this guy, Serge Faguet, is out there where any whiff of there has vanished into the wind. Faguet is an island unto himself, he lives alone, uses ultra-high-priced Russian escorts to maximize the benefits for sex, goes to bed at 9, wakes at 6, takes hundreds of pills a day, and you can read about his entire mad thing at the link in his name. He is going for super-human. In a post called ‘How to Biohack your Intelligence Now or Become Obsolete‘, he explains just what is in store for us mere humans.
“I think that what we are doing with biohacking is the beginning of humanity’s split into separate species. Enhanced posthumans who will make all the decisions (and who will likely come from the tech communities of Silicon Valley and China). “Basic humans,” who will (maybe) be taken care of well, but will have no real say in what happens.”
Doesn’t that sound fun for the rest of us? Course being older than Serge, I know life comes for all of us, breaks us down, turns the arrogant human with a ruthlessness that is breathtaking. I certainly plan to be around to see how Serge and his pal Sean Parker reap the whirlwind.
-
UnRest
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.
