CFS - Did you Know? - Part One
Well, hello, you journal, you. What do you know, I had another bad CFS day. The negative consequences following cleaning are cumulative w/ each additional day. I am sorry I have been doing almost no commenting. I am trying to reduce my browsers tabs by posting more. One clump of tabs are related to CFS, and so that's what you are going to get now!
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) and ME/CFS, is a complex, fatiguing, long-term medical condition diagnosed by required primary symptoms and criteria, and often involves a broad range of symptoms. Distinguishing core symptoms are lengthy exacerbations or "flares" of the illness after ordinary minor physical or mental activity, known as post-exertional malaise (PEM);[11][12] greatly diminished capacity to accomplish tasks that were routine before the illness; and sleep disturbances.[11][13][1][4][2]:7 Orthostatic intolerance (difficulty sitting and standing upright) and cognitive dysfunction are also diagnostic. Other common symptoms may involve numerous body systems, and chronic pain is common.[13][14]
While the cause is not understood, proposed mechanisms include biological, genetic, infectious, and physical or psychological stress affecting the biochemistry of the body.[5][15] Diagnosis is based on the patient's symptoms because no confirmed diagnostic test is available.[16] The fatigue in CFS is not due to strenuous ongoing exertion, is not much relieved by rest, and is not due to a previous medical condition.[13] Fatigue is a common symptom in many illnesses, but the unexplained fatigue and severity of functional impairment in CFS are relatively rare in these other illnesses.[17]
Persons with CFS may recover or improve over time, but some will become severely affected and disabled for an extended period.[18] No therapies or medications are approved to treat the cause of the illness; treatment is aimed at symptomatology.[7][19] The CDC recommends pacing (personal activity management) to keep mental and physical activity from making symptoms worse.[7] Limited evidence suggests that rintatolimod, counseling, and graded exercise helps some patients.[20]
I like that this mentions that even mental exertion can cause problems or exacerbations, (which I call crashes). It took years for anyone to accept this. Any kind of stress, physical or mental, can cause crashes. The effects of persistent or recurrent stress are cumulative or geometric. Even attention, thought or sex can trigger or contribute to relapses. Sometimes, even too much light or sound.
How is CFS managed? Of course, there is no cure. And there is a lot of denial. Being able to live a life where one can generate one's own choices, but keep within each day's, "energy envelope," in a safe and supportive environment, is crucial to minimising symptoms. Note, in the Wiki page, three management protocols are redundant - basically discussed twice: first under, "Management," and then under, "Therapies." Bad writing betrays the ongoing misunderstanding. Patients may benefit from cognitive-behavioural counselling, pacing and graded exercise. But, the fact is, doctors don't manage this illness. Only the patients can manage this illness.
In fact, counselling and graded exercise have been found to be generally ineffective as therapies. Counselling is based on an assumption that patients have some kind of depression or mental flaw. That's like calling a burnt-out light-bulb, "too dim." And the effectiveness of graded exercise, as a therapy, has been widely - and finally - debunked. Patients, who were once sensitive perfectionists and overachievers, certainly do not lack the will to be active. However, the only way pacing and graded exercise can help is if they are left to the patient to determine and employ.
CFS can affect all ages, genders and races or nationalities. Even though it is now said that USA minorities may have a higher incidence, I still carry the belief that CFS tends to be a little more common in people of a British or Celtic background - which can also include other Europeans. This partial list of people with CFS (aka, Myalgic Encephalomyelitis), seems to support this idea. (First official UK death from chronic fatigue syndrome, June 16, 2006).
But there are problems in diagnosing CFS. Males report their illness less than women. Children with CFS may be misunderstood. CFS can be misdiagnosed as various other illnesses, and vice versa.
Here is a blurb from the CDC, which has been historically naive and conservative on CFS, but it's the CDC, what're ya gonna do?...
A variety of studies by CDC and others have shown that between 1 and 4 million Americans suffer from Chronic Fatigue Syndrome (CFS). They are seriously impaired, at least a quarter are unemployed or on disability because of CFS. Yet, only about half have consulted a physician for their illness. The earlier a person with CFS receives medical treatment the greater the likelihood that the illness will resolve. Equally important, about 40% of people in the general population who report symptoms of CFS have a serious, treatable, previously unrecognized medical or psychiatric condition (such as diabetes, thyroid disease, substance abuse). CFS is a serious illness and poses a dilemma for patients, their families, and health care providers. This web site aims to provide evidence-based information concerning the illness, its manifestations, and treatment.
There are various pages at this site, regarding symptoms, management, and so on. (Looks like it hasn't been updated since 2009?!!)
I recently rewatched the movie, "Seabiscuit." It's about a phenomenal race horse, his jockey, etc., who helped bring the country out of the Depression, and help it confront the war which was on the horizon. It is an inspiring take of the little guy, fighting against the odds, to become a beacon of strength for the wider society. Well, who should write of such an exalting struggle than someone who's hopes had been dashed by outrageous misfortune? Someone's who's life had been destroyed - by CFS - leaving only a never ending fight not just to survive, but to prevail?
I don't remember if I heard of Laura Hillenbrand before she actually wrote the book, "Seabiscuit." But, certainly after that, she became a voice for people with CFS, long before the movie hit the box-office. I don't think too many people know she has had CFS. So, here's a very nice expose in the New Yorker, which traces the line between Laura's contraction of the illness, the hell she went through, and the book she finally wrote, which not only redeemed her, but helped inspire a whole lot of people, beyond those with CFS, to push on with their own goals and struggles. Hillenbrand also wrote Unbroken, about the famed Olympic runner and WW2 bombardier, Louis Zamperini, who became lost as sea, and then was tortured in Japanese P.O.W. camps. Talk about the struggle to prevail! Three movies were later developed, Unbroken (2014), its sequel Unbroken: Path to Redemption (2018), and Captured by Grace (2015).
A Sudden Illness - by Laura Hillenbrand, The New Yorker, June 30, 2003
In this article, Laura is driving along and almost hits a deer, but her life is saved, and a comet appears in the sky. Thenceforth, she experiences debilitating illness, including symptoms I am familiar with, like...
Sometimes I’d look at words or pictures but see only meaningless shapes. I’d stare at clocks and not understand what the positions of the hands meant. Words from different parts of a page appeared to be grouped together in bizarre sentences: “Endangered Condors Charged in Shotgun Killing.” In conversation, I’d think of one word but say something completely unrelated: “hotel” became “plankton”; “cup” came out “elastic.” I couldn’t hang on to a thought long enough to carry it through a sentence. When I tried to cross the street, the motion of the cars became so disorienting that I couldn’t move. I was at a sensory distance from the world, as if I were wrapped in clear plastic.
Here's a good Q&A discussion with Laura Hillenbrand, about her experience with CFS, and how she related to the survival story of Louis Zamperini.
An Author Escapes From Chronic Fatigue Syndrome.
This is why I talk about it. You can’t look at me and say I’m lazy or that this is someone who wants to avoid working. The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers. I was that kind of person. I was working my tail off in college and loving it. It’s exasperating because of the name, which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb.
This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.
And here's a quick Q&A synopsis from psychology professor, Leonard Jason, which tries to dispel notions that CFS is mere fatigue or depression: Learning Firsthand About Chronic Fatigue Syndrome, By David Tuller, NYT Health, Oct.13, 2009.
For a few years, I kept hearing about this person who was working on a CFS video, to be called, "Canary In A Coal Mine." I was later confused when it later debuted as, "Unrest," by Jennifer Brea. Unrest is a major go-to video for understanding CFS. I have posted about it, and Jennifer Brea, before. So, you can research my tags, or search online. Here is something I might have posted before, Brea speaking at TEDTalks...
The story and stigma of a baffling illness: Jen Brea speaks at TEDSummit, posted June 27, 2016
... Jennifer Brea... was pursuing a PhD in political science at Harvard when she came down with a sharp fever, which afterward gave way to a number of strange bodily symptoms - crippling exhaustion, hypersensitivity to sound, burning sensations and more. Doctor after doctor told her she was physically fine; tests found nothing amiss. When a neurologist told her she had conversion disorder and chalked her pain up to repressed trauma, Brea’s health only spiraled downhill more. Soon she was bedridden and almost unable to move. Not buying the conversion idea, Brea started doing her own digging online, finding a whole population of millions of people with similar symptoms who had been diagnosed with chronic fatigue syndrome, an widespread phenomenon that is poorly understood and badly under-researched. (Given popular perceptions that CFS is a “made-up” condition, Brea uses the more specific - if harder to pronounce - myalgic encephalomyeltis, or ME.)
Before I got CFS, I was runner, a weigh-lifter, a student, a researcher, a publisher, a partier, etc. When I started to feel it pulling me down, I was hitch-hiking and train-hopping out to Seattle. I was in a relationship, I was in a movie, I was in a clinical study. So, it's not like I suddenly stopped wanting to be active, right? Quite oppositely, the more I wanted to outrun this massive drag, the more I collapsed.
It is not uncommon for athletes - or very active people - to fall from CFS. Prior to her CFS, Laura Hillenbrand was an athlete. Swimmer Ella Eastin had pushed herself to break a record in the 2019 NCAA Championships, but got hit by CFS before she could make trials for the Olympics. Swimmer Ella Eastin’s path to the Olympics instead became a medical mystery journey. French track and field gold medal winner, Marie-José Pérec,left the Sidney 2000 Olympic Games, after being assaulted, but less well-known, after contracting Epstein Barr Virus, and likely CFS... Why Did French Runner Run Away? (She was also facing the stress of support by Australia for Cathy Freeman).
Perec, 32, who is a native of the French Caribbean island of Guadeloupe, won the women's 400 in Barcelona in 1992 and in Atlanta in 1996, when she also won the 200 meters. Since then, she has struggled with injury and illness - she suffers from Epstein-Barr Syndrome, which causes chronic fatigue.
She has not won a 400-meter race since the Atlanta Games and her form was poor in the few races she ran early this summer. Her relations with the French press, always marked by extreme sensitivity on her part, have deteriorated. At the same time, her desire for privacy has increased.
For athletes, there is something called The Overtraining Syndrome. Train too much, and you blow a fuse. Lights out on any chance of winning upcoming matches. In fact, push any kind of stress, and this can apply to anyone, athlete or not. People can fall from CFS if any one of these predisposing factors exist: Serious physical or emotional trauma. Exposure to toxins or pathogens. Exposure to EBV or CMV. A history of emotional abuse. Substance abuse. Or just poor sleep with an attempt to do everything all at once. Overtraining...
The overtraining syndrome affects mainly endurance athletes. It is a condition of chronic fatigue, underperformance, and an increased vulnerability to infection leading to recurrent infections. It is not yet known exactly how the stress of hard training and competition leads to the observed spectrum of symptoms.
Chronic Fatigue Syndrome, sometimes called CFS, is a condition that makes one feel so tired that he/she is unable to do all of the normal, daily activities. It is a debilitating and multifaceted disorder characterized by profound fatigue not improved by bed rest and may be worsened by physical or mental activity.
Overtraining Syndrome • Overtraining: A sharp increase in training volume, intensity, or frequency, up to near max capacity for the individual, that can be endured for only a short time (i.e., < 1 month). • Overtraining Syndrome: The result of overtraining, a long-term fall in performance capacity, with RPE and fatigue increased and energy...
So, ironically, it is often the most macho people who end up crashing, for years, possibly never to recover - while society tends to berate them as being malingerers, or the like. I could write a book.
On the other end of the spectrum, it often happens that it is the sensitive, creative, productive type who ends up being overtaken by this illness. Why is that? Well, it's very simple. Just like athletes, these people are perfectionists - workaholics - training their brains, and their hearts, towards some distant, almost impossible ideal. They lose sleep. They experience strain within society. They sometimes experience poor health or substance abuse. And, so many times, they endure rejection of their projects. They are out there, on a limb. So, it actually does make sense. Sensitive overachievers are not that different to physical athletes.
How many of you know that the following artists have had CFS?...
Stevie Nicks. "In 1987, Stevie Nicks checked herself into the Betty Ford clinic for a 30-day stay to kick her cocaine addiction. She followed that up with Fleetwood Mac's "Tango In the Night" album and tour, the band's first tour without Lindsey Buckingham. But she couldn't stay healthy. She was diagnosed with Chronic Fatigue Syndrome and found herself, once again, with an addiction problem, this time to pain killers." Stevie Nicks Interview - Off The Record (2000)
Naomi Weisstein. A radical feminist neuroscientist, psychologist and musician. Yeah, that's pretty overachieving. "By the fall of 1979, when we came to Greenwich Village on Naomi's Guggenheim, the day-to-day combat with the sharks had almost destroyed her. My sisters and I spent the first day there being driven by Naomi to install ghastly alarm systems that would go off like firebells when the faintest breeze blew. She was building a fort against the previous horrors. And she had to stay in shape for the endless combat, so when the disease hit, she continued her ferocious exercising -- exactly the wrong thing to do when this disease hits. She had come to New York, gloried in the Village's celebration of deviance after the repressiveness of Buffalo, and had been racked but happy. "Here comes the happy lady," they said at the gay xerox shop on Bleecker and at Balducci's, as she strode by on her long legs, looking like Freewheelin' Franklin. But now she was to be struck down, a fallen hero, a direct victim, I think, of body-punishing struggles against grotesque male supremacy. Too little has been made of the costs to women's health of such horrendous struggles."
Cher. "According to Berman, "After the success of Moonstruck, she was so worried about her next career move that she was overly cautious."[154] In the early 1990s, she contracted the Epstein-Barr virus[143] and developed chronic fatigue syndrome, which left her too exhausted to sustain her music and film careers.[155] Because she needed to earn money and was not healthy enough to work on other projects, she starred in infomercials launching health, beauty, and diet products,[156] which earned her close to $10 million in fees.[157] The skits were parodied on Saturday Night Live[158] and critics considered them a sellout,[157] many suggesting her film career was over.[159] She told Ladies' Home Journal, "Suddenly I became the Infomercial Queen and it didn't occur to me that people would focus on that and strip me of all my other things."[156]" - Wikipedia.
Laura Dundovic (born 16 September 1987 in Sydney, Australia) is an Australian actress, model and beauty pageant titleholder who won Miss Universe Australia 2008 and represented Australia in the Miss Universe 2008 competition, in which she placed in the top 10. She also took part in the Australian version of I'm A Celebrity Get Me Out Of Here.[1][2][3][4]
Keith Jarrett. Renowned jazz pianist, (of Celtic-Hungarian ancestry). He has always had that strange guttural utterance when he played - as if it was a strain to make the music, eh? So, I dunno. But he's another one. "In the late 1990s, Jarrett was diagnosed with chronic fatigue syndrome[12] and was unable to leave his home for long periods of time. It was during this period that he recorded The Melody at Night, with You, a solo piano effort consisting of jazz standards presented with very little of the reinterpretation he usually employs. The album had originally been a Christmas gift to his second wife, Rose Anne.[38] ...In a September 11, 2000 interview with Terry Gross, Jarrett revealed that Chronic Fatigue Syndrome had required him to radically overhaul his piano to have less "breakaway" keypress resistance in order for him to keep playing.[38]" - Wikipedia
Stuart Murdoch (of Belle and Sebastian). That's right. "Whilst at university at the end of the 1980s, he became ill with myalgic encephalomyelitis, or chronic fatigue syndrome, and was unable to work for seven years. Murdoch said that the isolation of these years is what led to his becoming a songwriter: "That was a big desert at the time, a kind of vacuum in my life. From that, these songs started coming out, these melodies where I could express what I was feeling." By early 1995 Murdoch had largely recovered from his illness and began to look for fellow musicians to form a band, which became Belle & Sebastian. Murdoch's struggle with chronic fatigue syndrome is the subject of the song "Nobody's Empire" on Belle & Sebastian's album Girls in Peacetime Want to Dance.[2]"- Wikipedia. Check out this great little biopic. Indie pop sensation’s disease became his muse
Do you know anybody with this illness? I occasionally hear about someone new - and then I generally forget again. Maybe that means I have it? Hmmm... could be. Well, it appears that this post is coming to an end. I'll have more things to add later, so look forward to a part two. Until then, I will leave you with a nice blog where a certain Ken Wilber describes his wrestling match with CFS. It's pretty good. It mentions karma. I also like it because it is easy on the CFS eyes - just like my journal. Ever wonder why my journal is white-on-black? Now you know.
"The medical team I had really was the finest ER team in Colorado, and they really did save my life. But, as orthodox physicians, they knew pretty much nothing about CFIDS/REDD/ME. I had to point out to each of them that the CDC (Centers for Disease Control in Atlanta) had finally conceded that not only is this a brutally real illness, it's approaching epidemic proportions. The CDC now estimates that at least one million Americans have this illness, although expert opinion puts it at at least double that. More people have it than have HIV, and quality of life studies indicate that the quality of life for those with active CFIDS is comparable to those undergoing chemotherapy. The parameters of this illness are actually fairly well understood. The exact trigger mechanism is not yet known, but it's mechanism of action is-it involves the damaging of the human body's production of the enzyme RNase. This defective enzyme then begins to dissolve the body's own RNA, and does so in literally every cell in the body, which is why so many different organ systems can end up involved. There is now even a test for this defective enzyme that is 95% accurate. All the other symptoms of this illness are caused by this central mechanism, which is why the only really accurate name for this illness is REDD (RNase Enzyme Deficiency Disease). "Chronic Fatigue Syndrome (CFS)" is almost a complete misnomer, first, because it's not really fatigue but paralysis that one experiences when there is a flare-up; and second, because that "fatigue" is the least of your worries in any event (it's definitely a problem, but quite far down on a list that includes everything from seizures to organ failure). For years now there has been a concerted effort to get the name changed, but so far the only alternative to CFS that one sees in this country is CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)-which is at least a slight improvement since the immune system is one of those systems hit hardest. In Britain it is referred to as M.E. (Myalgic Encephalomyelitis)-reflecting the neurological damage that is in fact quite similar to M.S. (Multiple Sclerosis). As "A Hummingbird's Guide to M.E." puts it: "In reality having M.E. is like having parts of Multiple Sclerosis, AIDS, Alzheimers, Arthritis and Epilepsy all mixed together at once, with some extra horrific symptoms thrown in that are entirely its own. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system-not a problem of ‘chronic fatigue.'"
"For those of you who would like more information on this syndrome, the aforementioned Hummingbird's Guide is one of dozens of sources of information that have finally become available that are quite accurate and useful. The resources they recommend are also ones that I highly recommend. Also check out ImmuneSupport.com and my own discussion of this illness and how it has affected me can be found here (as well as "A Sudden Illness" by Laura Hillenbrand, author of Seabiscuit)."
- from http://www.kenwilber.com/blog/show/214 "Meditate and Eat Your Veggies" December 26, 2006
Goodnight!
Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) and ME/CFS, is a complex, fatiguing, long-term medical condition diagnosed by required primary symptoms and criteria, and often involves a broad range of symptoms. Distinguishing core symptoms are lengthy exacerbations or "flares" of the illness after ordinary minor physical or mental activity, known as post-exertional malaise (PEM);[11][12] greatly diminished capacity to accomplish tasks that were routine before the illness; and sleep disturbances.[11][13][1][4][2]:7 Orthostatic intolerance (difficulty sitting and standing upright) and cognitive dysfunction are also diagnostic. Other common symptoms may involve numerous body systems, and chronic pain is common.[13][14]
While the cause is not understood, proposed mechanisms include biological, genetic, infectious, and physical or psychological stress affecting the biochemistry of the body.[5][15] Diagnosis is based on the patient's symptoms because no confirmed diagnostic test is available.[16] The fatigue in CFS is not due to strenuous ongoing exertion, is not much relieved by rest, and is not due to a previous medical condition.[13] Fatigue is a common symptom in many illnesses, but the unexplained fatigue and severity of functional impairment in CFS are relatively rare in these other illnesses.[17]
Persons with CFS may recover or improve over time, but some will become severely affected and disabled for an extended period.[18] No therapies or medications are approved to treat the cause of the illness; treatment is aimed at symptomatology.[7][19] The CDC recommends pacing (personal activity management) to keep mental and physical activity from making symptoms worse.[7] Limited evidence suggests that rintatolimod, counseling, and graded exercise helps some patients.[20]
I like that this mentions that even mental exertion can cause problems or exacerbations, (which I call crashes). It took years for anyone to accept this. Any kind of stress, physical or mental, can cause crashes. The effects of persistent or recurrent stress are cumulative or geometric. Even attention, thought or sex can trigger or contribute to relapses. Sometimes, even too much light or sound.
How is CFS managed? Of course, there is no cure. And there is a lot of denial. Being able to live a life where one can generate one's own choices, but keep within each day's, "energy envelope," in a safe and supportive environment, is crucial to minimising symptoms. Note, in the Wiki page, three management protocols are redundant - basically discussed twice: first under, "Management," and then under, "Therapies." Bad writing betrays the ongoing misunderstanding. Patients may benefit from cognitive-behavioural counselling, pacing and graded exercise. But, the fact is, doctors don't manage this illness. Only the patients can manage this illness.
In fact, counselling and graded exercise have been found to be generally ineffective as therapies. Counselling is based on an assumption that patients have some kind of depression or mental flaw. That's like calling a burnt-out light-bulb, "too dim." And the effectiveness of graded exercise, as a therapy, has been widely - and finally - debunked. Patients, who were once sensitive perfectionists and overachievers, certainly do not lack the will to be active. However, the only way pacing and graded exercise can help is if they are left to the patient to determine and employ.
CFS can affect all ages, genders and races or nationalities. Even though it is now said that USA minorities may have a higher incidence, I still carry the belief that CFS tends to be a little more common in people of a British or Celtic background - which can also include other Europeans. This partial list of people with CFS (aka, Myalgic Encephalomyelitis), seems to support this idea. (First official UK death from chronic fatigue syndrome, June 16, 2006).
But there are problems in diagnosing CFS. Males report their illness less than women. Children with CFS may be misunderstood. CFS can be misdiagnosed as various other illnesses, and vice versa.
Here is a blurb from the CDC, which has been historically naive and conservative on CFS, but it's the CDC, what're ya gonna do?...
A variety of studies by CDC and others have shown that between 1 and 4 million Americans suffer from Chronic Fatigue Syndrome (CFS). They are seriously impaired, at least a quarter are unemployed or on disability because of CFS. Yet, only about half have consulted a physician for their illness. The earlier a person with CFS receives medical treatment the greater the likelihood that the illness will resolve. Equally important, about 40% of people in the general population who report symptoms of CFS have a serious, treatable, previously unrecognized medical or psychiatric condition (such as diabetes, thyroid disease, substance abuse). CFS is a serious illness and poses a dilemma for patients, their families, and health care providers. This web site aims to provide evidence-based information concerning the illness, its manifestations, and treatment.
There are various pages at this site, regarding symptoms, management, and so on. (Looks like it hasn't been updated since 2009?!!)
I recently rewatched the movie, "Seabiscuit." It's about a phenomenal race horse, his jockey, etc., who helped bring the country out of the Depression, and help it confront the war which was on the horizon. It is an inspiring take of the little guy, fighting against the odds, to become a beacon of strength for the wider society. Well, who should write of such an exalting struggle than someone who's hopes had been dashed by outrageous misfortune? Someone's who's life had been destroyed - by CFS - leaving only a never ending fight not just to survive, but to prevail?
I don't remember if I heard of Laura Hillenbrand before she actually wrote the book, "Seabiscuit." But, certainly after that, she became a voice for people with CFS, long before the movie hit the box-office. I don't think too many people know she has had CFS. So, here's a very nice expose in the New Yorker, which traces the line between Laura's contraction of the illness, the hell she went through, and the book she finally wrote, which not only redeemed her, but helped inspire a whole lot of people, beyond those with CFS, to push on with their own goals and struggles. Hillenbrand also wrote Unbroken, about the famed Olympic runner and WW2 bombardier, Louis Zamperini, who became lost as sea, and then was tortured in Japanese P.O.W. camps. Talk about the struggle to prevail! Three movies were later developed, Unbroken (2014), its sequel Unbroken: Path to Redemption (2018), and Captured by Grace (2015).
A Sudden Illness - by Laura Hillenbrand, The New Yorker, June 30, 2003
In this article, Laura is driving along and almost hits a deer, but her life is saved, and a comet appears in the sky. Thenceforth, she experiences debilitating illness, including symptoms I am familiar with, like...
Sometimes I’d look at words or pictures but see only meaningless shapes. I’d stare at clocks and not understand what the positions of the hands meant. Words from different parts of a page appeared to be grouped together in bizarre sentences: “Endangered Condors Charged in Shotgun Killing.” In conversation, I’d think of one word but say something completely unrelated: “hotel” became “plankton”; “cup” came out “elastic.” I couldn’t hang on to a thought long enough to carry it through a sentence. When I tried to cross the street, the motion of the cars became so disorienting that I couldn’t move. I was at a sensory distance from the world, as if I were wrapped in clear plastic.
Here's a good Q&A discussion with Laura Hillenbrand, about her experience with CFS, and how she related to the survival story of Louis Zamperini.
An Author Escapes From Chronic Fatigue Syndrome.
This is why I talk about it. You can’t look at me and say I’m lazy or that this is someone who wants to avoid working. The average person who has this disease, before they got it, we were not lazy people; it’s very typical that people were Type A and hard, hard workers. I was that kind of person. I was working my tail off in college and loving it. It’s exasperating because of the name, which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb.
This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.
And here's a quick Q&A synopsis from psychology professor, Leonard Jason, which tries to dispel notions that CFS is mere fatigue or depression: Learning Firsthand About Chronic Fatigue Syndrome, By David Tuller, NYT Health, Oct.13, 2009.
For a few years, I kept hearing about this person who was working on a CFS video, to be called, "Canary In A Coal Mine." I was later confused when it later debuted as, "Unrest," by Jennifer Brea. Unrest is a major go-to video for understanding CFS. I have posted about it, and Jennifer Brea, before. So, you can research my tags, or search online. Here is something I might have posted before, Brea speaking at TEDTalks...
The story and stigma of a baffling illness: Jen Brea speaks at TEDSummit, posted June 27, 2016
... Jennifer Brea... was pursuing a PhD in political science at Harvard when she came down with a sharp fever, which afterward gave way to a number of strange bodily symptoms - crippling exhaustion, hypersensitivity to sound, burning sensations and more. Doctor after doctor told her she was physically fine; tests found nothing amiss. When a neurologist told her she had conversion disorder and chalked her pain up to repressed trauma, Brea’s health only spiraled downhill more. Soon she was bedridden and almost unable to move. Not buying the conversion idea, Brea started doing her own digging online, finding a whole population of millions of people with similar symptoms who had been diagnosed with chronic fatigue syndrome, an widespread phenomenon that is poorly understood and badly under-researched. (Given popular perceptions that CFS is a “made-up” condition, Brea uses the more specific - if harder to pronounce - myalgic encephalomyeltis, or ME.)
Before I got CFS, I was runner, a weigh-lifter, a student, a researcher, a publisher, a partier, etc. When I started to feel it pulling me down, I was hitch-hiking and train-hopping out to Seattle. I was in a relationship, I was in a movie, I was in a clinical study. So, it's not like I suddenly stopped wanting to be active, right? Quite oppositely, the more I wanted to outrun this massive drag, the more I collapsed.
It is not uncommon for athletes - or very active people - to fall from CFS. Prior to her CFS, Laura Hillenbrand was an athlete. Swimmer Ella Eastin had pushed herself to break a record in the 2019 NCAA Championships, but got hit by CFS before she could make trials for the Olympics. Swimmer Ella Eastin’s path to the Olympics instead became a medical mystery journey. French track and field gold medal winner, Marie-José Pérec,left the Sidney 2000 Olympic Games, after being assaulted, but less well-known, after contracting Epstein Barr Virus, and likely CFS... Why Did French Runner Run Away? (She was also facing the stress of support by Australia for Cathy Freeman).
Perec, 32, who is a native of the French Caribbean island of Guadeloupe, won the women's 400 in Barcelona in 1992 and in Atlanta in 1996, when she also won the 200 meters. Since then, she has struggled with injury and illness - she suffers from Epstein-Barr Syndrome, which causes chronic fatigue.
She has not won a 400-meter race since the Atlanta Games and her form was poor in the few races she ran early this summer. Her relations with the French press, always marked by extreme sensitivity on her part, have deteriorated. At the same time, her desire for privacy has increased.
For athletes, there is something called The Overtraining Syndrome. Train too much, and you blow a fuse. Lights out on any chance of winning upcoming matches. In fact, push any kind of stress, and this can apply to anyone, athlete or not. People can fall from CFS if any one of these predisposing factors exist: Serious physical or emotional trauma. Exposure to toxins or pathogens. Exposure to EBV or CMV. A history of emotional abuse. Substance abuse. Or just poor sleep with an attempt to do everything all at once. Overtraining...
The overtraining syndrome affects mainly endurance athletes. It is a condition of chronic fatigue, underperformance, and an increased vulnerability to infection leading to recurrent infections. It is not yet known exactly how the stress of hard training and competition leads to the observed spectrum of symptoms.
Chronic Fatigue Syndrome, sometimes called CFS, is a condition that makes one feel so tired that he/she is unable to do all of the normal, daily activities. It is a debilitating and multifaceted disorder characterized by profound fatigue not improved by bed rest and may be worsened by physical or mental activity.
Overtraining Syndrome • Overtraining: A sharp increase in training volume, intensity, or frequency, up to near max capacity for the individual, that can be endured for only a short time (i.e., < 1 month). • Overtraining Syndrome: The result of overtraining, a long-term fall in performance capacity, with RPE and fatigue increased and energy...
So, ironically, it is often the most macho people who end up crashing, for years, possibly never to recover - while society tends to berate them as being malingerers, or the like. I could write a book.
On the other end of the spectrum, it often happens that it is the sensitive, creative, productive type who ends up being overtaken by this illness. Why is that? Well, it's very simple. Just like athletes, these people are perfectionists - workaholics - training their brains, and their hearts, towards some distant, almost impossible ideal. They lose sleep. They experience strain within society. They sometimes experience poor health or substance abuse. And, so many times, they endure rejection of their projects. They are out there, on a limb. So, it actually does make sense. Sensitive overachievers are not that different to physical athletes.
How many of you know that the following artists have had CFS?...
Stevie Nicks. "In 1987, Stevie Nicks checked herself into the Betty Ford clinic for a 30-day stay to kick her cocaine addiction. She followed that up with Fleetwood Mac's "Tango In the Night" album and tour, the band's first tour without Lindsey Buckingham. But she couldn't stay healthy. She was diagnosed with Chronic Fatigue Syndrome and found herself, once again, with an addiction problem, this time to pain killers." Stevie Nicks Interview - Off The Record (2000)
Naomi Weisstein. A radical feminist neuroscientist, psychologist and musician. Yeah, that's pretty overachieving. "By the fall of 1979, when we came to Greenwich Village on Naomi's Guggenheim, the day-to-day combat with the sharks had almost destroyed her. My sisters and I spent the first day there being driven by Naomi to install ghastly alarm systems that would go off like firebells when the faintest breeze blew. She was building a fort against the previous horrors. And she had to stay in shape for the endless combat, so when the disease hit, she continued her ferocious exercising -- exactly the wrong thing to do when this disease hits. She had come to New York, gloried in the Village's celebration of deviance after the repressiveness of Buffalo, and had been racked but happy. "Here comes the happy lady," they said at the gay xerox shop on Bleecker and at Balducci's, as she strode by on her long legs, looking like Freewheelin' Franklin. But now she was to be struck down, a fallen hero, a direct victim, I think, of body-punishing struggles against grotesque male supremacy. Too little has been made of the costs to women's health of such horrendous struggles."
Cher. "According to Berman, "After the success of Moonstruck, she was so worried about her next career move that she was overly cautious."[154] In the early 1990s, she contracted the Epstein-Barr virus[143] and developed chronic fatigue syndrome, which left her too exhausted to sustain her music and film careers.[155] Because she needed to earn money and was not healthy enough to work on other projects, she starred in infomercials launching health, beauty, and diet products,[156] which earned her close to $10 million in fees.[157] The skits were parodied on Saturday Night Live[158] and critics considered them a sellout,[157] many suggesting her film career was over.[159] She told Ladies' Home Journal, "Suddenly I became the Infomercial Queen and it didn't occur to me that people would focus on that and strip me of all my other things."[156]" - Wikipedia.
Laura Dundovic (born 16 September 1987 in Sydney, Australia) is an Australian actress, model and beauty pageant titleholder who won Miss Universe Australia 2008 and represented Australia in the Miss Universe 2008 competition, in which she placed in the top 10. She also took part in the Australian version of I'm A Celebrity Get Me Out Of Here.[1][2][3][4]
Keith Jarrett. Renowned jazz pianist, (of Celtic-Hungarian ancestry). He has always had that strange guttural utterance when he played - as if it was a strain to make the music, eh? So, I dunno. But he's another one. "In the late 1990s, Jarrett was diagnosed with chronic fatigue syndrome[12] and was unable to leave his home for long periods of time. It was during this period that he recorded The Melody at Night, with You, a solo piano effort consisting of jazz standards presented with very little of the reinterpretation he usually employs. The album had originally been a Christmas gift to his second wife, Rose Anne.[38] ...In a September 11, 2000 interview with Terry Gross, Jarrett revealed that Chronic Fatigue Syndrome had required him to radically overhaul his piano to have less "breakaway" keypress resistance in order for him to keep playing.[38]" - Wikipedia
Stuart Murdoch (of Belle and Sebastian). That's right. "Whilst at university at the end of the 1980s, he became ill with myalgic encephalomyelitis, or chronic fatigue syndrome, and was unable to work for seven years. Murdoch said that the isolation of these years is what led to his becoming a songwriter: "That was a big desert at the time, a kind of vacuum in my life. From that, these songs started coming out, these melodies where I could express what I was feeling." By early 1995 Murdoch had largely recovered from his illness and began to look for fellow musicians to form a band, which became Belle & Sebastian. Murdoch's struggle with chronic fatigue syndrome is the subject of the song "Nobody's Empire" on Belle & Sebastian's album Girls in Peacetime Want to Dance.[2]"- Wikipedia. Check out this great little biopic. Indie pop sensation’s disease became his muse
Do you know anybody with this illness? I occasionally hear about someone new - and then I generally forget again. Maybe that means I have it? Hmmm... could be. Well, it appears that this post is coming to an end. I'll have more things to add later, so look forward to a part two. Until then, I will leave you with a nice blog where a certain Ken Wilber describes his wrestling match with CFS. It's pretty good. It mentions karma. I also like it because it is easy on the CFS eyes - just like my journal. Ever wonder why my journal is white-on-black? Now you know.
"The medical team I had really was the finest ER team in Colorado, and they really did save my life. But, as orthodox physicians, they knew pretty much nothing about CFIDS/REDD/ME. I had to point out to each of them that the CDC (Centers for Disease Control in Atlanta) had finally conceded that not only is this a brutally real illness, it's approaching epidemic proportions. The CDC now estimates that at least one million Americans have this illness, although expert opinion puts it at at least double that. More people have it than have HIV, and quality of life studies indicate that the quality of life for those with active CFIDS is comparable to those undergoing chemotherapy. The parameters of this illness are actually fairly well understood. The exact trigger mechanism is not yet known, but it's mechanism of action is-it involves the damaging of the human body's production of the enzyme RNase. This defective enzyme then begins to dissolve the body's own RNA, and does so in literally every cell in the body, which is why so many different organ systems can end up involved. There is now even a test for this defective enzyme that is 95% accurate. All the other symptoms of this illness are caused by this central mechanism, which is why the only really accurate name for this illness is REDD (RNase Enzyme Deficiency Disease). "Chronic Fatigue Syndrome (CFS)" is almost a complete misnomer, first, because it's not really fatigue but paralysis that one experiences when there is a flare-up; and second, because that "fatigue" is the least of your worries in any event (it's definitely a problem, but quite far down on a list that includes everything from seizures to organ failure). For years now there has been a concerted effort to get the name changed, but so far the only alternative to CFS that one sees in this country is CFIDS (Chronic Fatigue Immune Dysfunction Syndrome)-which is at least a slight improvement since the immune system is one of those systems hit hardest. In Britain it is referred to as M.E. (Myalgic Encephalomyelitis)-reflecting the neurological damage that is in fact quite similar to M.S. (Multiple Sclerosis). As "A Hummingbird's Guide to M.E." puts it: "In reality having M.E. is like having parts of Multiple Sclerosis, AIDS, Alzheimers, Arthritis and Epilepsy all mixed together at once, with some extra horrific symptoms thrown in that are entirely its own. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system-not a problem of ‘chronic fatigue.'"
"For those of you who would like more information on this syndrome, the aforementioned Hummingbird's Guide is one of dozens of sources of information that have finally become available that are quite accurate and useful. The resources they recommend are also ones that I highly recommend. Also check out ImmuneSupport.com and my own discussion of this illness and how it has affected me can be found here (as well as "A Sudden Illness" by Laura Hillenbrand, author of Seabiscuit)."
- from http://www.kenwilber.com/blog/show/214 "Meditate and Eat Your Veggies" December 26, 2006
Goodnight!