Chronic Fatigue Quotes

I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn't really.

After trauma the world is experienced with a different nervous system. The survivor’s energy now becomes focused on suppressing inner chaos, at the expense of spontaneous involvement in their lives. These attempts to maintain control over unbearable physiological reactions can result in a whole range of physical symptoms, including fibromyalgia, chronic fatigue, and other autoimmune diseases. This explains why it is critical for trauma treatment to engage the entire organism, body, mind, and brain.

People who don't see you every day have a hard time understanding how on some days--good days--you can run three miles, but can barely walk across the parking lot on other days,' [my mom] said quietly.

In fact, I do not think laziness exists. You know what does exist? Executive dysfunction, procrastination, feeling overwhelmed, perfectionism, trauma, amotivation, chronic pain, energy fatigue, depression, lack of skills, lack of support, and differing priorities.

Cat, you asked me before to find out if those dream -suppression pills had any side effects. I’ve checked with Pathology, and they said you might experience depression, mood swings, irritability, paranoia, and chronic fatigue. Have you noticed any of that?

Addiction, self-sabotage, procrastination, laziness, rage, chronic fatigue, and depression are all ways that we withhold our full participation in the program of life we are offered. When the conscious mind cannot find a reason to say no, the unconscious says no in its own way.

Sure, society understands visible shackles-- they get the symbolism of the wheelchair, of prosthetics, of a bumper sticker reading disabled veteran, but they still struggle for comprehension of the profound, invisible shackles that an illness such as [Chronic Fatigue] puts on a person's body.

People with [Chronic Fatigue] who kill themselves are the millenium's favorite type of disabled citizens-- those who will walk quietly among the healthy, then quietly dispose of themselves.

And so it is a truth universally acknowledged that a young woman in possession of vague symptoms like fatigue and pain will be in search of a doctor who believes she is actually sick.

It's extraordinary how many people have a postviral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.

I’m really tired”, you come to understand, is meaningless, giving the impression all will be well with a good rest and that if you’ve ever been tired, you know what it is to be exhausted.

I had learned quickly that life doesn't always go the way I want it to, and that's okay. I still plod on.

Pain is a portal to transformation, It does not knock politely.

Jay Levy saw ten women," the doctor later recalled, "And he thought they were all hysterical. Then he saw a man, whose complaints he took seriously.

Within that tired body, lies a soul so persistent in love, repentant in serving others before yourself. I see the person who can sympathize all layers of the human experience. I see you.

Because doctors can’t name the illness, everyone—the patient's family, friends, health insurance, and in many cases the patient—comes to think of the patient as not really sick and not really suffering. What the patient comes to require in these circumstances, in the absence of help, are facts—tests and studies that show that they might “in fact” have something.

Do you know about the spoons? Because you should. The Spoon Theory was created by a friend of mine, Christine Miserandino, to explain the limits you have when you live with chronic illness. Most healthy people have a seemingly infinite number of spoons at their disposal, each one representing the energy needed to do a task. You get up in the morning. That’s a spoon. You take a shower. That’s a spoon. You work, and play, and clean, and love, and hate, and that’s lots of damn spoons … but if you are young and healthy you still have spoons left over as you fall asleep and wait for the new supply of spoons to be delivered in the morning. But if you are sick or in pain, your exhaustion changes you and the number of spoons you have. Autoimmune disease or chronic pain like I have with my arthritis cuts down on your spoons. Depression or anxiety takes away even more. Maybe you only have six spoons to use that day. Sometimes you have even fewer. And you look at the things you need to do and realize that you don’t have enough spoons to do them all. If you clean the house you won’t have any spoons left to exercise. You can visit a friend but you won’t have enough spoons to drive yourself back home. You can accomplish everything a normal person does for hours but then you hit a wall and fall into bed thinking, “I wish I could stop breathing for an hour because it’s exhausting, all this inhaling and exhaling.” And then your husband sees you lying on the bed and raises his eyebrow seductively and you say, “No. I can’t have sex with you today because there aren’t enough spoons,” and he looks at you strangely because that sounds kinky, and not in a good way. And you know you should explain the Spoon Theory so he won’t get mad but you don’t have the energy to explain properly because you used your last spoon of the morning picking up his dry cleaning so instead you just defensively yell: “I SPENT ALL MY SPOONS ON YOUR LAUNDRY,” and he says, “What the … You can’t pay for dry cleaning with spoons. What is wrong with you?” Now you’re mad because this is his fault too but you’re too tired to fight out loud and so you have the argument in your mind, but it doesn’t go well because you’re too tired to defend yourself even in your head, and the critical internal voices take over and you’re too tired not to believe them. Then you get more depressed and the next day you wake up with even fewer spoons and so you try to make spoons out of caffeine and willpower but that never really works. The only thing that does work is realizing that your lack of spoons is not your fault, and to remind yourself of that fact over and over as you compare your fucked-up life to everyone else’s just-as-fucked-up-but-not-as-noticeably-to-outsiders lives. Really, the only people you should be comparing yourself to would be people who make you feel better by comparison. For instance, people who are in comas, because those people have no spoons at all and you don’t see anyone judging them. Personally, I always compare myself to Galileo because everyone knows he’s fantastic, but he has no spoons at all because he’s dead. So technically I’m better than Galileo because all I’ve done is take a shower and already I’ve accomplished more than him today. If we were having a competition I’d have beaten him in daily accomplishments every damn day of my life. But I’m not gloating because Galileo can’t control his current spoon supply any more than I can, and if Galileo couldn’t figure out how to keep his dwindling spoon supply I think it’s pretty unfair of me to judge myself for mine. I’ve learned to use my spoons wisely. To say no. To push myself, but not too hard. To try to enjoy the amazingness of life while teetering at the edge of terror and fatigue.

This sort of sickness is a nothingness, really – a state of limbo; neither well enough to be a functioning member of society nor possessing a sign of illness that signals to the world you are sick. There’s no broken arm. Not even a sore throat and hacking cough.

No matter how hopeless you feel, strive to find the one thing that makes you feel alive and pull yourself to the light at the end of the tunnel. There is hope. Trust me.

Time becomes very weird. Sometimes it seems as if the hours are rushing by in a blur, the moment of performance hurtling toward me. Other times the clock seems to poke along like a sloth with chronic fatigue syndrome.

Highly traumatized and chronically neglected or abused individuals are dominated by the immobilization/shutdown system. On the other hand, acutely traumatized people (often by a single recent event and without a history of repeated trauma, neglect or abuse) are generally dominated by the sympathetic fight/flight system. They tend to suffer from flashbacks and racing hearts, while the chronically traumatized individuals generally show no change or even a decrease in heart rate. These sufferers tend to be plagued with dissociative symptoms, including frequent spacyness, unreality, depersonalization, and various somatic and health complaints. Somatic symptoms include gastrointestinal problems, migraines, some forms of asthma, persistent pain, chronic fatigue, and general disengagement from life.

Somatic symptoms for which no clear physical basis can be found are ubiquitous in traumatized children and adults. They can include chronic back and neck pain, fibromyalgia, migraines, digestive problems, spastic colon/irritable bowel syndrome, chronic fatigue, and some forms of asthma.16 Traumatized children have fifty times the rate of asthma as their nontraumatized peers.17 Studies have shown that many children and adults with fatal asthma attacks were not aware of having breathing problems before the attacks.

If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome. One doctor said: “Just drink some coffee.

I have continued to get sicker in part because I refuse to rest as much as I should, because I am optomistic and because I push myself.

As one patient with chronic fatigue syndrome put it, 'The difference between a crazed neurotic and a seriously ill person is simply a test.

Mental illness and chronic fatigue are comparable to a dead soul inhabiting a surviving body.

The absolute worst thing that you can say to a person that suffers with chronic fatigue: It is all in your head.

But the fatigue of physical dysfunction, I came to recognize, is as different from normal sleep deprivation as COVID-19 is from the common cold. It was not caused by needing sleep, I thought, but by my body’s cellular conviction that it needed to conserve energy in order to fix whatever was wrong. The feeling erased my will, the sense of identity that drives most of us. The worst part of my fatigue was the loss of an intact sense of self.

Van der Poel discovered—in addition to Buteyko’s diagnoses—that people with chronic fatigue, burnout, fibromyalgia and myalgic encephalomyelitis also breathe more rapidly or deeply than is necessary.

I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn’t like his classes, but because he had an illness that seemed to be eating him up from the inside, despite it not really being visible on the outside.

We can't escape from our problems, but we can learn to live with them in a way that is peaceful and joyful.

The weekend was a much-needed breath of fresh air; Monday always seemed to not only take that breath right back, but add a few extra pounds to my shoulders as well.

If I have found promise, it is because I’ve squeezed it from the seemingly impossible.

I’m in a caregiver's relationship with my body, a perpetual internal gauging of wellness. My spine is Hogarth’s thermometer. I ascend and descend its rungs a hundred times a day, reading the mercury level. The same dis-ease speaks many languages. If you block one mouth, another will speak. The symptoms represent differently, and as I get older, my translation changes. The prescription changes. Must be vigilant. Must be my best nurse.

Widespread pain conditions like fibromyalgia or chronic fatigue syndrome are especially social conditions, since their symptoms have a direct impact on a patient’s ability to maintain various roles and identities. Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases.

hierarchies of diseases exist among patients and healthcare professionals...and when it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS) /myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list

Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it's worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar but as a whine.

It dawns on me that maybe I'm just terrifically lazy; that I might be appropriating other people’s invisible sicknesses and disorders and scribbling them on the clipboard at the end of my bed to fool the nurses; so I can indulge in rest cures all day, every day. That I’m even fooling myself.

Multiple allergies are perhaps the most obvious sign of immune system overreaction. Patients with CFIDS frequently have a past history of allergies, implying that their immune response is genetically primed for a vigorous response. Other patients with CFIDS develop allergic symptoms after the onset of their illness. CFIDS patients have a hair trigger for allergies.

Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.

How to be there for someone with depression or anxiety 1. Know that you are needed, and appreciated, even if it seems you are not. 2. Listen. 3. Never say ‘pull yourself together’ or ‘cheer up’ unless you’re also going to provide detailed, foolproof instructions. (Tough love doesn’t work. Turns out that just good old ‘love’ is enough.) 4. Appreciate that it is an illness. Things will be said that aren’t meant. 5. Educate yourself. Understand, above all, that what might seem easy to you –going to a shop, for instance –might be an impossible challenge for a depressive. 6. Don’t take anything personally, any more than you would take someone suffering with the flu or chronic fatigue syndrome or arthritis personally. None of this is your fault. 7. Be patient. Understand it isn’t going to be easy. Depression ebbs and flows and moves up and down. It doesn’t stay still. Do not take one happy/ bad moment as proof of recovery/ relapse. Play the long game. 8. Meet them where they are. Ask what you can do. The main thing you can do is just be there. 9. Relieve any work/ life pressure if that is doable. 10. Where possible, don’t make the depressive feel weirder than they already feel. Three days on the sofa? Haven’t opened the curtains? Crying over difficult decisions like which pair of socks to wear? So what. No biggie. There is no standard normal. Normal is subjective. There are seven billion versions of normal on this planet.

People with chronic illness, pain, and fatigue have been among the most critical of this aspect of the social model, rightly noting that social and structural changes will do little to make one's joints stop aching or to alleviate back pain. Nor will changes in architecture and attitude heal diabetes or cancer or fatigue. Focusing exclusively on disabling barriers, as a strict social model seems to do, renders pain and fatigue irrelevant to the project of disability politics.

we see cardiac diastolic dysfunction in almost every case... there are patients whose diastolic dysfunction is so low/poor that they would fit well into a cardiac ward awaiting transplant... The whole idea that you can take a disease like this [M.E./Chronic Fatigue Syndrome] and exercise your way to health is foolishness. It is insane.

ME’ as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndrome’; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs, as well as social trends and social care systems that reward illness seeking behaviours.

It is a perfectly normal side-effect for someone to have depression because he cannot move or function in his job. That is all that it is: a side-effect. Those with disabilities and debilitating illnesses probably have more to get depressed about than others.

The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E.) at this point is undoubtedly appropriate rest in the early and/or severe stages of the illness. The importance of avoiding overexertion in M.E. can not be overestimated.

Burnout occurs when an individual has experienced prolonged demands, chronic stress, fatigue, a lack of support, and a decrease satisfaction in what they are doing.

Chronic pain shatters productive lives. Chronic pain almost always is accompanied by depression, anxiety, frustration, fatigue, isolation, and lowered self-esteem.

If your body is chronically deprived of the regenerative sleep between 10:00 p.m. and 2:00 a.m., then you may still feel fatigued when you wake up in the morning.

Fatigue had started to set in...and now my eyes showed it as I struggled to keep them open.

The video was still playing, although I didn't know why. It seemed as if the able-bodied dancers were mocking me.

During my time of need, the medical system failed me.

Light is life.

The biochemistry and needs of each patient is unique. Chronically ill patients require nutritional support for healing.

I am a person suffering from chronic fatigue syndrome and I am appalled that it has been given such a trivial name. Here is a disease that totally disables most of its victims; a disease that causes balance disorders, resulting in some of us requiring wheelchairs, cognitive disorders that leave us unable to perform formerly simple mental tasks, and immune disorders that lay us open to multiple infections and to autoimmune problems. And all the medical profession can come up with to define this syndrome to the general population is "fatigue!

I have no problem with not understanding the exact mechanism of the symptoms of CFS…I do have a problem with the lack of respect given patients with poorly understood neurological disease.

Please don't look at our scarlet A's and write us off. Look us in the eye, talk directly to us. Don't panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things, and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses.

All I ask of all my friends is that they understand this is truly a devastating neurological illness and not just about being a bit tired because its way and above beyond that. One day ME will be unravelled by the many researchers working tirelessly around the world I hope it's in my lifetime!

A heated and often bitter debate persists over whether chronic fatigue syndrome (or myalgic encephalomyelitis (or the postviral fatigue syndrome) is physical or psychological. Although many doctors avoid controversy by stating the obvious—namely, that the mind-body split is artificial and all diseases have physical and mental components—what is really at issue is whether this illness is real or imaginary.

Allison of RADAD: The Royal Academy of Dramatic Arts and Disability The ticks of Lyme Suck my blood of time And leave me rather drowsy. My feet move like tar With Epstein-Barr And I wake up feeling lousy. I fall asleep in my Pepsi With Narcolepsy To the chagrin of the soda jerk. My Chronic Fatigue (and thespian ability) puts me in the big league (of insurance fraud disability) So who the fuck needs to work!

As a doctor who has been bedridden with severe ME for a long period after GET caused a severe relapse from which I have not recovered, I am in a unique position to combine the patient and doctor perspective...

I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV.

If the individual feels never- ending self-imposed pressure to do good, be good, or appear good, she will eventually fall into the long-term effects of fatigue. The long-term effects of this can only be characterized as chronic fatigue.

An apple a day might have kept the doctor away prior to the industrialization of food growing and preparation. But, according to research compiled by the United States Drug Administration (USDA) today’s apple contains residue of eleven different neurotoxins—azinphos, methyl chloripyrifos, diazinon, dimethoate, ethion, omthoate, parathion, parathion methyl, phosalone, and phosmet — and the USDA was testing for only one category of chemicals known as organophosphate insecticides. That doesn’t sound too appetizing does it? The average apple is sprayed with pesticides seventeen times before it is harvested.

Many chronic symptoms and health conditions—such as fatigue, sleepiness, mood disorders, insomnia, gastroesophageal reflux disease, lipid disorders, high blood pressure, headaches (including migraines), gas, bloating, irritable bowel syndrome, joint inflammation, acne, and difficulty concentrating, to name a few—will improve on a ketogenic diet. Treating lifestyle conditions with lifestyle change such as this can make us a healthier and less drug-dependent country. – Jackie Eberstein

You get ill, you are accused of being mentally ill, denied effective treatment, then when you campaign for ‘real science’, you are accused of terrorising those who do not believe in your illness...after all, if your message is that people who say they are suffering from ME or CFS are mentally ill, then accusing them of irrational attacks adds strength to your case.

Most of us have physical or mental conditions that have caused us distress in the past. And when we get a whiff of one coming—an incipient asthma attack, a symptom of chronic fatigue, a twinge of anxiety—we panic. Instead of relaxing with the feeling and letting it do its minute and a half while we’re fully open and receptive to it, we say, “Oh no, oh no, here it is again.” We refuse to feel fundamental ambiguity when it comes in this form, so we do the thing that will be most detrimental to us: we rev up our thoughts about it. What if this happens? What if that happens? We stir up a lot of mental activity. Body, speech, and mind become engaged in running away from the feeling, which only keeps it going and going and going. We

It must be noted that there is no proof that it is justified to apply the label somatisation to such conditions as chronic fatigue syndrome and several more illnesses that established medicine has so for failed to explain scientifically. ……Don't hesitate to ask questions about scientific evidence behind this talk about somatisation. Be persistent, because a diagnosis of somatisation is definitely not an innocuous label. It will close various doors and lead (to) treatments that usually get nowhere.

It is [Simon] Wessely’s often-unconcealed “derision” directed towards people with ME -- a disease from which people die and which appears on Coroners’ death certificates as the cause of death -- which arouses such anger, an anger that is not confined to patients in the UK but encompasses medical scientists in other countries whose decision-makers have come under Wessely’s thrall.

In July and August 2011 Simon Wessely ran a media campaign with the BBC and the broadsheets, successfully vilifying patients who had justifiably criticised his research. In his case, the marginalisation of ME patients was not ‘unintentional’. It was active and deliberate.

He has so little energy in his body that he can only walk to the bathroom on the other side of the hallway twice a day. After a few meters he is worn out, much worse than after the marathons he used to run. He was a triathlete, he earned a brown belt in judo, became Dutch champion in hockey, until he contracted pneumonia in 2005 and never recovered. Ever since, he has a headache, vertigo, and insomnia, but worst of all the fatigue: after minimal effort his muscles would lose all their strength and take days to recover. Only after a few years did he get a diagnosis: Chronic Fatigue Syndrome (CFS).

November 2, 1984 was an especially tragic day in the Chronic Fatigue Syndrome/AIDS epidemic. That was the day Anthony Fauci became the Director of the National Institutes of Allergy and Infectious Diseases. (NIAID). (Good Intentions p.128) It was the day a thin-skinned, physically ultra-diminutive man with a legendary Napoleonic attitude was positioned by destiny to become the de facto AIDS Czar. In the fog of culpability that constitutes what could be called "Holocaust II" one thing is clear: the buck, on its way to the very top of the government, at least pauses at the megalomaniac desk of Anthony Fauci.

And so, what the patient knows to be true—this matters. What I know to be true matters. What anyone with chronic fatigue syndrome, multiple chemical sensitivity, fibromyalgia, Lyme, lupus, MS, ulcerative colitis, Crohn’s—what they know, their experience, it matters, and the experts should be listening to them.

This feeling of stress triggers a cascade of physiological consequences. The hypothalamus and pituitary gland in the brain release hormones that cause the release of cortisol from the adrenal glands located on the kidneys. Cortisol increases heart rate, among other things, readying the body for “fight” or “flight.” Acutely, the release of cortisol is beneficial and helps you cope with whatever is urgently being demanded of you. But if the stress becomes chronic, maladaptive things begin to happen. Normally, the release of cortisol turns the hypothalamus and pituitary off, stopping the release of hormone, which in turn stops the further release of cortisol from the adrenal glands. It’s a nice, clean, negative feedback loop. But in the chronically stressed, the loop breaks. The brain stops reacting to cortisol. Our natural, automatic shutoff valve stops working. The brain keeps releasing hormone, and the adrenal glands keep dumping cortisol into the bloodstream, even when the stressful thing that initially triggered the stress response is no longer around. Chronic, elevated levels of cortisol have been associated with a weakened immune system, deficits in short-term memory, chronic fatigue syndrome, anxiety disorders, and depression.

With a strange logic, [Rod Liddle] asserts that because ME patients deny that they have a psychiatric disorder, this proves they have a psychiatric disorder. Meanwhile, people are quietly dying of ME. ME sufferer Emily Collingridge died, aged 30; Victoria Webster died at just 18. People don’t die from ‘exercise phobia’. ME is not ‘lethargy’ and ‘aches and pains’, as Liddle claims. Severe ME is lying in a darkened room, alone, in agonising pain, tube-fed, catheterised, too weak to move or speak.

Eating pork, eel and catfish while doing this meditation regularly may result in Kundalini syndrome. Pork oil or lard should definitely be avoided. Kundalini syndrome may manifest as: 1. Chronic fatigue (or chronic extreme general weakness) 2. Overheating of the body 3. Chronic insomnia 4. Depression 5. Skin rashes 6. Hypertension and others

The Scream Death changes the meaning of words 　 Life is not what it use to mean the carefree seamless summer of my childhood is stitched into seasons years decades appointments filling the void with more blackness like oil roiling from the ocean floor love is bottom-lined to to the slit of pleasure God to the slit of the confessional work to clock-punching family to obligation friends to activity partners going through the motions watching myself in a movie in a dream at a wake... we are all amnesiacs lost we suffer from anosognosia and adderall and chronic fatigue and hypochondria he hobbles trembling forsaken alone pressing his ears like a vise in the Krakatoan twilight 　 I scream

Through sickness I became notable.

The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.

Sophia’s case sheds light on CFS because there were changes in her dorsal ganglia – the gatekeepers to sensation in the brain – and we know that fatigue depends on sensory perception.

I have seen mood stabilization, reduced or eliminated depression, reduced or eliminated anxiety, improved cognitive functioning, greatly enhanced and evened-out energy levels, cessation of seizures, improved overall neurological stability, cessation of migraines, improved sleep, improvement in autistic symptoms, improvements with PCOS (polycystic ovary syndrome), improved gastrointestinal functioning, healthy weight loss, cancer remissions and tumor shrinkage, much better management of underlying previous health issues, improved symptoms and quality of life in those struggling with various forms of autoimmunity (including many with type 1 and 1.5 diabetes), fewer colds and flus, total reversal of chronic fatigue, improved memory, sharpened cognitive functioning, and significantly stabilized temperament. And there is quality evidence to support the beneficial impact of a fat-based ketogenic approach in all these types of issues. – Nora Gedgaudas

Studies also show that doctors may view ME/CFS patients as hostile or combative when they challenge the incumbent biopsychosocial model of ME or CFS. Yet rather than feeling threatened or worse still, viewing the patient as uncooperative, there is an opportunity to discuss the limitations of medical knowledge. Here, we believe there is an ethical duty for candour and honesty: indeed, where there are clear gaps in medical knowledge the patient voice should have even more standing.

Many families amass more objects than their houses can hold. The result is garages given over to old furniture and unused sports equipment, home offices cluttered with boxes of stuff that haven’t yet been taken to the garage. Three out of four Americans report their garages are too full to put a car into them. Women’s cortisol levels (the stress hormone) spike when confronted with such clutter (men’s, not so much). Elevated cortisol levels can lead to chronic cognitive impairment, fatigue, and suppression of the body’s immune system.

Then there were all the diseases one is vulnerable to in the woods — giardiasis, eastern equine encephalitis, Rocky Mountain spotted fever, Lyme disease, ehrlichiosis, schistosomiasis, brucellosis, and shigellosis, to offer but a sampling. Eastern equine encephalitis, caused by the prick of a mosquito, attacks the brain and central nervous system. If you’re lucky you can hope to spend the rest of your life propped in a chair with a bib around your neck, but generally it will kill you. There is no known cure. No less arresting is Lyme disease, which comes from the bite of a tiny deer tick. If undetected, it can lie dormant in the human body for years before erupting in a positive fiesta of maladies. This is a disease for the person who wants to experience it all. The symptoms include, but are not limited to, headaches, fatigue, fever, chills, shortness of breath, dizziness, shooting pains in the extremities, cardiac irregularities, facial paralysis, muscle spasms, severe mental impairment, loss of control of body functions, and — hardly surprising, really — chronic depression.

These reports from the IOM, AHRQ, and NIH demonstrate how much we have learned about ME/CFS and how much we still do not know. We do not understand its pathogenesis, and we do not have a diagnostic test or a cure. However, these recent reports, summarizing information from more than 9000 articles, should put the question of whether ME/CFS is a "real" illness to rest. When skeptical physicians, many of whom are unaware of this literature, tell patients with ME/CFS that "there is nothing wrong," they not only commit a diagnostic error: They also compound the patients' suffering.

Mark Vink is a not a typical ME/CFS patient. He is severely ill. It takes him twelve hours to recover from a walk from his bed to the bathroom. While he’s not typical he may not be that uncommon, though. Some estimates suggest that about 25% of ME/CFS patients are home bound or bedridden. Few ever make it into research studies.

The pathophysiological consequences of ME/CFS are multi-systemic and may include: immune and neuroendocrine abnormalities; brain dysfunction and neurocognitive defects; cardiovascular and autonomic disturbances; abnormalities in energy production including mitochondrial dysfunction, and changes in the expression of certain genes.

The evidence of inflammation in people with ME/CFS is important because the incremental aerobic exercise recommended by the Wessely School and encapsulated in NICE’s Clinical Guideline 53 is contra-indicated in cases of inflamed and damaged tissue and inevitably results in post-exertional relapse with malaise, which is the cardinal symptom of ME/CFS.

CBT is a much publicised and debated psychotherapeutic intervention for ME/CFS….The premise that cognitive therapy (eg. changing ‘illness beliefs’) and graded activity can ‘reverse’ or cure this illness is not supported by post-intervention outcome data. In routine medical practice, CBT has not yielded clinically significant outcomes for patients with ME/CFS.

We've got to do better, I thought. This story of injustice had continued on far too long. It's time for the misinformation and stigmatization surrounding ME/CFS to stop. Our leaders need to step up to the plate, acknowledge past mistakes, and fix them. All the evidence is there in black and white. More research funding to find a cure would prevent so much unnecessary suffering and save lives.

For the last 48 years, myalgic encephalomyelitis (ME) has been formally classified by the World Health Organisation as a neurological disorder but for the last 29 years a group of UK psychiatrists (known as the Wessely School) have denied it exists other than as an aberrant belief; they insist that it is a mental (behavioural) disorder that can be cured by graded exercise and “cognitive re-structuring”.

The people in whom CFS often takes a hold are those driven, workaholic, goal driven, perfectionist, 'never say die' characters. This is because these people ignore the normal cues that make us stop striving - they continue despite symptoms of fatigue and pain in order to achieve. The achievement is at the expense of their health. Furthermore, these personalities are more likely to turn to addictions to mask symptoms in order that they can keep going.

Pacing consists of listening to your body, and seeing symptoms as signs, usually of overactivity. You use information from your body to reorganise your activities to get as low a symptom level as possible. This usually means splitting activities into smaller bits and taking frequent rest breaks. It also means finding less strenuous ways of performing activities. When less energy is spent on some activities, you’ll have more energy left over to have fun.

We have witnessed hundreds of clients and patients damage their metabolic and hormonal health through low-carb diets. It is becoming increasingly apparent that there is an epidemic of metabolic and hormonal dysfunction emerging in the hordes of people who have been following low-carb diets. This is particularly impactful for women—and especially physically active women—who commonly suffer side effects from their low-carb diets, including: A stopped or irregular menstrual cycle (amenorrhea)418 419 420 421 422 Decreased fertility423 424 425 Hypoglycemic episodes and blood sugar swings426 Depression, anxiety, and irritability427 428 429 Poor libido430 431 432 Disrupted sleep/insomnia433 434 Dysfunctional relationship with food and fear about eating either fat or carbohydrate435 436 Cycles of restriction and binges437 438 Chronic fatigue 439 440 441 442 Poor thyroid function (and a slow metabolism)443 444 445 446 447 448

Several years ago I was lecturing in British Columbia. Dr [Simon] Wessely was speaking and he gave a thoroughly enjoyable lecture on M.E. and CFS. He had the hundreds of staff physicians laughing themselves silly over the invented griefs of the M.E. and CFS patients who according to Dr Wessely had no physical illness what so ever but a lot of misguided imagination. I was appalled at his sheer effectiveness, the amazing control he had over the minds of the staid physicians….His message was very clear and very simple. If I can paraphrase him: “M.E. and CFS are non-existent illnesses with no pathology what-so-ever. There is no reason why they all cannot return to work tomorrow. The next morning I left by car with my crew and arrived in Kelowna British Columbia that afternoon. We were staying at a patient’s house who had severe M.E. with dysautanomia and was for all purposes bed ridden or house bound most of the day. That morning she had received a phone call from her insurance company in Toronto. (Toronto is approximately 2742 miles from Vancouver). The insurance call was as follows and again I paraphrase: “Physicians at a University of British Columbia University have demonstrated that there is no pathological or physiological basis for M.E. or CFS. Your disability benefits have been stopped as of this month. You will have to pay back the funds we have sent you previously. We will contact you shortly with the exact amount you owe us”. That night I spoke to several patients or their spouses came up to me and told me they had received the same message. They were in understandable fear. What is important about this story is that at that meeting it was only Dr Wessely who was speaking out against M.E. and CFS and how … were the insurance companies in Toronto and elsewhere able to obtain this information and get back to the patients within a 24 hour period if Simon Wessely was not working for the insurance industry… I understand that it was also the insurance industry who paid for Dr Wessely’s trip to Vancouver.

COULD IT BE B12 DEFICIENCY? The neurological symptoms of B12 deficiency that occur in young and middle-aged people are very similar to those in older people. They include the following: • Numbness, tingling, or burning sensations of the hands, feet, extremities, or truncal area, often misdiagnosed as diabetic neuropathy or chronic inflammatory demyelinating polyneuropathy (CIDP) • Tremor, often misdiagnosed as essential tremor or pre-Parkinson’s disease • Muscle weakness, paresthesias, and paralysis, sometimes attributed to Guillain-Barré syndrome • Pain, fatigue, and debility, often labeled as “chronic fatigue syndrome” • “Shaky leg” syndrome (leg trembling) • Confusion and mental fogginess, often misdiagnosed as early-onset dementia • Unsteadiness, dizziness, and paresthesias, often misdiagnosed as multiple sclerosis • Weakness of extremities, clumsiness, muscle cramps, twitching, or foot drop, often misdiagnosed as amyotrophic lateral sclerosis (ALS) • Psychiatric symptoms, such as depression or psychosis (covered in greater length in the next chapter) • Visual disturbances, vision loss, or blindness In contrast, a doctor ignorant about the effects of B12 deficiency can destroy a patient’s life. The

In my work as a therapist I have seen hundreds of clients who struggle with these issues, and I am convinced now more than ever of one simple truth: they are not lazy. In fact, I do not think laziness exists. You know what does exist? Executive dysfunction, procrastination, feeling overwhelmed, perfectionism, trauma, amotivation, chronic pain, energy fatigue, depression, lack of skills, lack of support, and differing priorities. ADHD, autism, depression, traumatic brain injury, and bipolar and anxiety disorders are just some of the conditions that affect executive function, making planning, time management, working memory, and organization more difficult, and tasks with multiple steps intimidating or boring.

Many doctors (and medical students) display uncertainty about whether or not CFS/ME is real…Patients with CFS/ME often experience suspicion by health professionals…The (often unintentional) marginalization of many CFS/ME patients represents a failure in medical professionalism, one that may lead to further ethical and practical consequences both for progressive research into CFS/ME and for ethical care... With one exception, doctors attending the seminar were either defensive or silent. In their eyes, the ME patients present were conforming to stereotype (angry, unscientific, unreasonable) and therefore they – the doctors – would not engage with them. Paradoxically, these doctors were themselves conforming to another stereotype, as described by the speaker: ‘Knowledge-formation is also influenced by social and cultural factors. Such encounters have an inherent power differential; there is significant potential…to be unjust from an epistemic point of view.

Unfortunately, sitting rests the parts of the body that don’t need much of it while working the parts that desperately do. Specifically, it disengages the lower extremities while utilizing the spine. (This is in sharp contrast to squatting, which disengages the spine while utilizing the lower extremities.) Because sitting positions the spine vertically, it provides no rest or relief from the gravitational forces that compress it. Without a periodic therapeutic reprieve through the day, the relentless load overwhelms the entire structure, joints and muscles alike. To maintain an erect seated posture, some muscle groups in the back have to continually contract. Since this requires a great deal of energy, the muscles quickly become fatigued. (That is why slumping is more comfortable: It takes less energy to maintain.) When the muscles tire, you rely on the backrest more and your muscles less. The less you rely on your muscles, the weaker and more dysfunctional they become. The weaker and more dysfunctional they become, the more you rely on the backrest. The more you rely on the backrest, the more you tend to slump. The more you slump, the more pronounced the debilitating C-shaped curvature becomes. This weakens the muscles in your back even further, which causes them to overload the joints they serve. Sitting in chairs affects even the areas seemingly at rest (particularly the hips and knees). Because sitting keeps the joints static for long periods, the muscles that serve them become fixed in a short, tight position. When at last you do get up and move, the muscles impose more stress on these joints, thereby increasing their susceptibility to wear and tear. The prolonged stasis also prevents the joints from being lubricated with nourishing synovial fluid. Once depleted, the hips and knees, like the spine, deteriorate and erode. Is it any wonder that the areas most traumatized by sitting, namely, the lower back, hips, and knees, are also the most arthritic and disabled areas of the body in the world today? The real mystery is why so few people have made the connection between prolonged sitting and the epidemic of chronic pain. In fact, they need only look to their own bodies for an abundance of evidence.

THE DIET-GO-ROUND LOW-CALORIE DIETS Diets began by limiting the number of calories consumed in a day. But restricting calories depleted energy, so people craved high-calorie fat and sugar as energizing emergency fuel. LOW-FAT DIETS High-calorie fats were targeted. Restricting fat left people hungry, however, and they again craved more fats and sugars. FAKE FAT Synthetic low-cal fats were invented. People could now replace butter with margarine, but without calories it didn’t deliver the energy and satisfaction people needed. They still craved real fat and sugar. THE DIET GO-ROUND GRAPEFRUIT DIETS Banking on the antioxidant and fat-emulsifying properties of grapefruit, dieters could eat real fat again, as long as they ate a grapefruit first. But even grapefruits were no match for the high-fat American diet. SUGAR BLUES The more America restricted fat in any way to lose weight, the more the body rebounded by storing fat, and craving and bingeing on fats and sugars. Sugar was now to blame! SUGAR FREE High-calorie sugars were replaced with no-calorie synthetic sweeteners. The mind was happy but the body was starving as diet drinks replaced meals. People eventually binged on excess calories from other sources, such as protein. HIGH-PROTEIN DIETS The new diet let people eat all the protein they wanted without noticing the restriction of carbs and sugar. Energy came from fat stores and dieters lost weight. But without carbs, they soon experienced low energy and craved and binged on carbs. HIGH-CARB DIETS Carb-craving America was ripe for high-carb diets. You could now lose weight and eat up to 80 percent carbs—but they had to be slow-burning, complex carbs. Fast-paced America was addicted to fast energy, however, and high-carb diets soon became high-sugar diets. LOW CHOLESTEROL The combination of sugar, fat, and stress raised cholesterol to dangerous levels. The solution: Reemphasize complex carbs and reduce all animal fats. Once again, dieters felt restricted and began craving and bingeing on fats and sugars. EXERCISE Diets weren’t working, so exercise became the cholesterol cure-all. It worked for a time, but people didn’t like to “work out.” Within 25 years, no more than 20 percent of Americans would do it regularly. VEGETARIANISM With heart disease and cancers on the rise, red meat was targeted. Vegetarianism came into fashion but was rarely followed correctly. People lived on pasta and bread, and blood sugars and energy levels went out of control. GRAZING High-carb diets were causing energy and blood sugar problems. If you ate every 2 hours, energy was propped up and fast-paced America could keep speeding. Fatigue became chronic fatigue, however, with depression and anxiety to follow. FOOD COMBINING By eating fats, proteins, and carbs separately, digestion improved and a host of digestive, energy, and weight problems were helped temporarily. But the rules for what you could eat together led to more frequent small meals. People eventually slipped back to their old ways and old problems. THE ZONE Aimed at fixing blood sugar levels, this diet balanced intake of proteins, fats, and carbs. It worked, but again restricted certain kinds of carbs, so it didn’t last, and America was again craving emergency fuel. COFFEE TO THE RESCUE Exhausted and with a million things to do, America turned to legal stimulants like coffee for energy. But borrowed energy must be paid back, and many are still living in debt. FULL CIRCLE Frustrated, America is turning to new crash diets and a wave of high-protein diets. It is time to break this man-made cycle with the simplicity of nature’s own 3-Season Diet. If you let nature feed you, you will not starve or crave anything.