"I HAVE CFS."
I don't have Chronic Fatigue Syndrome, it has me.
Chronic Fatigue Syndrome, (aka, CFS, and M.E.), is a whole-body, super-activation of the immune system, causing other systems and organs to slow down to a virtual halt. CFS flares or relapses are triggered by exertion, stress, food, pathogens, or even noise or light, immediately or days later. For example, after doing some cooking (through fatigue) on Monday, I was hit by deep fatigue, migraine and sore leg muscles all through Tuesday and into this morning. I probably won't be able to get any significant work done today. I have no idea why my calfs are aching like I ran a marathon - whether that was from walking around in the kitchen on Monday, or whether that was from mowing the lawn two or three weeks ago.
Chronic Fatigue Syndrome, (a gravely euphemistic misnomer), is the body reacting so extremely to viruses that the person basically becomes "allergic" to anything and everything. The problem is, there are no actual viruses in the body. It's all an immune hyper-reaction to some memory of a virus, or viruses. It's like the opposite of homeopathic healing. Although I dno't have Epstein-Barr Virus (EBV) in my bloodstream, the main indicator of my reaction to the so-called presence of EBV has been 100 times that of a person who actually suffers from active EBV mononucleosis. And the body isn't just reacting to phantoms of EBV, but CMV, HHV, and lots of other things, viral or nonviral. It is crazy!
But, CFS usually starts with some great shock or trauma in life, and/or some associated viral illness, such as Mono - or COVID. You have heard of COVID "Long-Haulers"? They are virtually indistinguishable from people with CFS/M.E., (although perhaps there may slightly different genetic damage done). Similarly, Gulf War Illness, Post-Polio Fatigue Syndrome, Fibromyalgia, possibly MS, and other chronic illnesses, are all manifestations or variations of CFS, though presenting different symptom expressions. Whereas COVID Long-hauler syndrome has been receiving much attention recently, CFS per se, (like GWS), receives very little attention and research funding, whereas it usually ranks as #1 in suicide rates among other common chronic illnesses.
Although general cluster outbreaks of CFS have been known to occur, CFS has not been shown to be contagious. Rather, something else appears to be going on in triggering such clusters - some combination of factors, such as release of some pesticide, mould, stress, plus the already widely common prevalence of a virus such as EBV. While CFS is almost certainly not contagious, people who suffer from CFS generally get sicker when they are around other people! This is because other people extend expectations that people with CFS are incapable of meeting. Also, CFS is generally simultaneously not taken seriously, AND taken advantage of, by more predatory or opportunistic people in society. I am referring to people with narcissistic, or even psychopathic, inclinations, who seek to thrive by misrepresenting and preying upon the more vulnerable. And everyone should educate themselves to this dynamic, which, of course, also impacts the poor, or other marginal people in society.
In the video below, a young woman tells of her new understanding that her suffering had not been all in her head, (though it certainly afflicted her brain). Not only do healthy people commonly discount personal reports of CFS symptoms, and relate them to their own experiences of common tiredness, and such, but people who do have CFS often try to outrun their symptoms, in a pathos of denial, until they finally collapse, in tortuous paralysis. As people with this illness learn to deal with their illness, it is not surprising that they grow weary of being around other people and, instead, retreat into their own silence and solitude. Which is what psychologists, fancying CFS to be something like depression, warn is exactly the wrong thing to do. What do they know? They think CFS is like a dimming light bulb, when it is actually like a light bulb that has completely burnt out.
So, note, in the video below, how the sufferer says she wishes to be away from people, while expressing both joy and sorrow over her recent diagnosis. A major hell she will experience, as time goes on, is that she will be stuck in the need to avoid human intimacy, (of which she will be physiologically incapable much of the time), while also wanting the common luxury of sharing her feelings with others, (who generally cannot relate). The video below, which I think gives a fairly good synopsis of what it is like to deal with (moderate) CFS, came to my via some online searching after being recommended by an LJ friend to other videos by "Meg," some of which are included in this post. Thanks to her!
If you are interested, you can find out lots more about CFS by exploring my tags and by checking out a_chronic_ill. Of course, YouTube will take you to more videos.
Chronic Fatigue Syndrome: 2 Years On - Carbs are bad. Proteins, ketos, water, salt and bicarb help. I have three giant mugs of "decaf mocha" every morning, which contains about 1/2 teaspoon of decaf instant coffee. With amble water, a little bicarb, salt, and rest, this can help get my circadian rythms moving. Though this miniscule amount of caffeine usually hampers my brain a bit, eventually the trade-off is usually worth it. Especially if I can get a nap in.
Jennifer Brea: UNREST / Jennifer Brae: AFTER UNREST
The social dynamic which actually abuses people with CFS, which can be the worst from relatives who think they care, goes something like this: "Since you say you're sick but you don't look sick to me, you must be some kind of inferior human being. But since I care so much, I will help you by bossing you around and imposing solutions. If you resist this help, then you are being ungrateful, and I can no longer trust you or spend time on you. Lucky me! My hands are free of this problem. I am completely right and you are completely wrong. Or, at least, I'll ignore this conclusion by ignoring you."
Some people feel they need to base their worth upon targetting or controlling someone they deem to be, "THE PROBLEM."
Note that, if you have relatives or friends who are still stuck in the whole "sibling rivalry" thing, this dynamic can be intensely weird and taxing. The more you try to relate to these control-obsessed busy bodies, the worse they get, and them more you see they are stuck - reinforced for - playing games they should have resolved back in childhood. It is seriously problem not only from siblings, but from people in the world who still play these games with people they find to be, for them, proxies for past siblings, or past parents.
I must say, however, that people with CFS are not without "fault" at all times. Since everything annoys and taxes them, then it is natural that they would have a mentality that people only mean them harm. And, when they interact with people, and see those people make such glaring mistakes about how they ought to be managing their lives, and energy, then it is natural that their frayed nerves would prompt them to react in anger or distress. But, the fact is, people with CFS simply want tow things: To be left alone, and to be supported, genuinely. They feel 200 hundred years old, like they've pulled an all-nighter for a few months, like the ability to even yawn is some far-away, impossible dream. They just want to stop being put-upon by everything. Including judgment.
People with CFS don't have the illness, it has them. It controls anything and everything they try to do. So, when other people come along and ask them or expect them to do more than they can do - even if it means keeping an impossible appointment with a doctor - they feel despair. Being controlled not only by CFS, and not only by misfortune, draining finances, and lost social connexions - and then being controlled by other people on TOP of that? No way! And certainly not by people who are egoistically obsessed with controlling easy prey at any opportunity! People on a mission to appear right or good above all else.
People with CFS, likewise, also experience inherent shame in their illness. Self-disappointment. Usually, before they became ill, they were strong people with big goals and very astute, responsible hearts. Creative, sensitive, self-willed, go-getters! So, they are the first to be disappointed in their sudden fall from competence! The last thing they need, on top of that, is to be shamed by society. But that is exactly what happens. The whole thing is like a Xeno's Paradox. The harder the try, the worse things get, exponentially. In every dimension.
And aside: The shame of relinquishing control to manipulators. - It happened to me!
Introducing Meg - 2017. - Nothing about CFS here - BUT, here's an example of whom often gets stricken with CFS; Intelligent, creative, sensitive, ambitious, self-motivated and just plain dazzling.
(Meg experiences major life events).
- I believe her earlier vlog posts about her CFS (2016 "An Update") are now private on her channel.
The Reality Of Moving With Chronic Illness - 2021. It happened to me!
"Left Out" - Subtitled documentary (47 mins).
CFS is a hyper-immune response to now absent viruses, allergens or stimili. This affects all parts of the body directly, and also via the brain. The profusion of cytokine immune chemicals, normally a transient event in response to infection, chronically, toxically bombard the brain. This causes continuing pain. Whether or not there may actually be viruses in the brain or neurons, this cytokine storm continuously flushes out fluid from the brain, in attempt to flush out a virus. Thus the brain becomes dehydrated. Increased toxins in the gut and blood also agitate the brain. In addition, to pain, migraines, dehydration and toxins, inflammation occurs. Chronic subacute inflammation is a fundamental problem in CFS, affecting the brain and circulatory system, encouraging cognitive dementia and chronic circulatory decline.
With all these things hitting the brain, then symptoms like PTSD, paranoia, anxiety, and chronic pain easilly emerge. This physiological assault is a more intense version of how traumatic memories can alter a person's psychology and well being. Thus the following two links...
Central Sensitisation Syndrome 1
Central Sensitisation Syndrome 2 - (longer lecture) (loud)
Peripheral Sensitisation Syndrome
https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?fbclid=IwAR0ZKuVpltCdc0Y7HwFImT17CBHsRvw9Qc4oJZsjr4AnYhrVa_UxINGCs5s
Chronic Fatigue - Dr. Alan Pocinki - 42 min lecture
CFS - Did you Know? - madman101
Some of what it feels like to have CFS. - madman101
Chronic Fatigue Syndrome, (aka, CFS, and M.E.), is a whole-body, super-activation of the immune system, causing other systems and organs to slow down to a virtual halt. CFS flares or relapses are triggered by exertion, stress, food, pathogens, or even noise or light, immediately or days later. For example, after doing some cooking (through fatigue) on Monday, I was hit by deep fatigue, migraine and sore leg muscles all through Tuesday and into this morning. I probably won't be able to get any significant work done today. I have no idea why my calfs are aching like I ran a marathon - whether that was from walking around in the kitchen on Monday, or whether that was from mowing the lawn two or three weeks ago.
Chronic Fatigue Syndrome, (a gravely euphemistic misnomer), is the body reacting so extremely to viruses that the person basically becomes "allergic" to anything and everything. The problem is, there are no actual viruses in the body. It's all an immune hyper-reaction to some memory of a virus, or viruses. It's like the opposite of homeopathic healing. Although I dno't have Epstein-Barr Virus (EBV) in my bloodstream, the main indicator of my reaction to the so-called presence of EBV has been 100 times that of a person who actually suffers from active EBV mononucleosis. And the body isn't just reacting to phantoms of EBV, but CMV, HHV, and lots of other things, viral or nonviral. It is crazy!
But, CFS usually starts with some great shock or trauma in life, and/or some associated viral illness, such as Mono - or COVID. You have heard of COVID "Long-Haulers"? They are virtually indistinguishable from people with CFS/M.E., (although perhaps there may slightly different genetic damage done). Similarly, Gulf War Illness, Post-Polio Fatigue Syndrome, Fibromyalgia, possibly MS, and other chronic illnesses, are all manifestations or variations of CFS, though presenting different symptom expressions. Whereas COVID Long-hauler syndrome has been receiving much attention recently, CFS per se, (like GWS), receives very little attention and research funding, whereas it usually ranks as #1 in suicide rates among other common chronic illnesses.
Although general cluster outbreaks of CFS have been known to occur, CFS has not been shown to be contagious. Rather, something else appears to be going on in triggering such clusters - some combination of factors, such as release of some pesticide, mould, stress, plus the already widely common prevalence of a virus such as EBV. While CFS is almost certainly not contagious, people who suffer from CFS generally get sicker when they are around other people! This is because other people extend expectations that people with CFS are incapable of meeting. Also, CFS is generally simultaneously not taken seriously, AND taken advantage of, by more predatory or opportunistic people in society. I am referring to people with narcissistic, or even psychopathic, inclinations, who seek to thrive by misrepresenting and preying upon the more vulnerable. And everyone should educate themselves to this dynamic, which, of course, also impacts the poor, or other marginal people in society.
In the video below, a young woman tells of her new understanding that her suffering had not been all in her head, (though it certainly afflicted her brain). Not only do healthy people commonly discount personal reports of CFS symptoms, and relate them to their own experiences of common tiredness, and such, but people who do have CFS often try to outrun their symptoms, in a pathos of denial, until they finally collapse, in tortuous paralysis. As people with this illness learn to deal with their illness, it is not surprising that they grow weary of being around other people and, instead, retreat into their own silence and solitude. Which is what psychologists, fancying CFS to be something like depression, warn is exactly the wrong thing to do. What do they know? They think CFS is like a dimming light bulb, when it is actually like a light bulb that has completely burnt out.
So, note, in the video below, how the sufferer says she wishes to be away from people, while expressing both joy and sorrow over her recent diagnosis. A major hell she will experience, as time goes on, is that she will be stuck in the need to avoid human intimacy, (of which she will be physiologically incapable much of the time), while also wanting the common luxury of sharing her feelings with others, (who generally cannot relate). The video below, which I think gives a fairly good synopsis of what it is like to deal with (moderate) CFS, came to my via some online searching after being recommended by an LJ friend to other videos by "Meg," some of which are included in this post. Thanks to her!
If you are interested, you can find out lots more about CFS by exploring my tags and by checking out a_chronic_ill. Of course, YouTube will take you to more videos.
Click to viewChronic Fatigue Syndrome: 2 Years On - Carbs are bad. Proteins, ketos, water, salt and bicarb help. I have three giant mugs of "decaf mocha" every morning, which contains about 1/2 teaspoon of decaf instant coffee. With amble water, a little bicarb, salt, and rest, this can help get my circadian rythms moving. Though this miniscule amount of caffeine usually hampers my brain a bit, eventually the trade-off is usually worth it. Especially if I can get a nap in.
Jennifer Brea: UNREST / Jennifer Brae: AFTER UNREST
The social dynamic which actually abuses people with CFS, which can be the worst from relatives who think they care, goes something like this: "Since you say you're sick but you don't look sick to me, you must be some kind of inferior human being. But since I care so much, I will help you by bossing you around and imposing solutions. If you resist this help, then you are being ungrateful, and I can no longer trust you or spend time on you. Lucky me! My hands are free of this problem. I am completely right and you are completely wrong. Or, at least, I'll ignore this conclusion by ignoring you."
Some people feel they need to base their worth upon targetting or controlling someone they deem to be, "THE PROBLEM."
Note that, if you have relatives or friends who are still stuck in the whole "sibling rivalry" thing, this dynamic can be intensely weird and taxing. The more you try to relate to these control-obsessed busy bodies, the worse they get, and them more you see they are stuck - reinforced for - playing games they should have resolved back in childhood. It is seriously problem not only from siblings, but from people in the world who still play these games with people they find to be, for them, proxies for past siblings, or past parents.
I must say, however, that people with CFS are not without "fault" at all times. Since everything annoys and taxes them, then it is natural that they would have a mentality that people only mean them harm. And, when they interact with people, and see those people make such glaring mistakes about how they ought to be managing their lives, and energy, then it is natural that their frayed nerves would prompt them to react in anger or distress. But, the fact is, people with CFS simply want tow things: To be left alone, and to be supported, genuinely. They feel 200 hundred years old, like they've pulled an all-nighter for a few months, like the ability to even yawn is some far-away, impossible dream. They just want to stop being put-upon by everything. Including judgment.
People with CFS don't have the illness, it has them. It controls anything and everything they try to do. So, when other people come along and ask them or expect them to do more than they can do - even if it means keeping an impossible appointment with a doctor - they feel despair. Being controlled not only by CFS, and not only by misfortune, draining finances, and lost social connexions - and then being controlled by other people on TOP of that? No way! And certainly not by people who are egoistically obsessed with controlling easy prey at any opportunity! People on a mission to appear right or good above all else.
People with CFS, likewise, also experience inherent shame in their illness. Self-disappointment. Usually, before they became ill, they were strong people with big goals and very astute, responsible hearts. Creative, sensitive, self-willed, go-getters! So, they are the first to be disappointed in their sudden fall from competence! The last thing they need, on top of that, is to be shamed by society. But that is exactly what happens. The whole thing is like a Xeno's Paradox. The harder the try, the worse things get, exponentially. In every dimension.
And aside: The shame of relinquishing control to manipulators. - It happened to me!
Introducing Meg - 2017. - Nothing about CFS here - BUT, here's an example of whom often gets stricken with CFS; Intelligent, creative, sensitive, ambitious, self-motivated and just plain dazzling.
(Meg experiences major life events).
- I believe her earlier vlog posts about her CFS (2016 "An Update") are now private on her channel.
The Reality Of Moving With Chronic Illness - 2021. It happened to me!
"Left Out" - Subtitled documentary (47 mins).
CFS is a hyper-immune response to now absent viruses, allergens or stimili. This affects all parts of the body directly, and also via the brain. The profusion of cytokine immune chemicals, normally a transient event in response to infection, chronically, toxically bombard the brain. This causes continuing pain. Whether or not there may actually be viruses in the brain or neurons, this cytokine storm continuously flushes out fluid from the brain, in attempt to flush out a virus. Thus the brain becomes dehydrated. Increased toxins in the gut and blood also agitate the brain. In addition, to pain, migraines, dehydration and toxins, inflammation occurs. Chronic subacute inflammation is a fundamental problem in CFS, affecting the brain and circulatory system, encouraging cognitive dementia and chronic circulatory decline.
With all these things hitting the brain, then symptoms like PTSD, paranoia, anxiety, and chronic pain easilly emerge. This physiological assault is a more intense version of how traumatic memories can alter a person's psychology and well being. Thus the following two links...
Central Sensitisation Syndrome 1
Central Sensitisation Syndrome 2 - (longer lecture) (loud)
Peripheral Sensitisation Syndrome
https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose?fbclid=IwAR0ZKuVpltCdc0Y7HwFImT17CBHsRvw9Qc4oJZsjr4AnYhrVa_UxINGCs5s
Chronic Fatigue - Dr. Alan Pocinki - 42 min lecture
CFS - Did you Know? - madman101
Some of what it feels like to have CFS. - madman101