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.

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.

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.

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?

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.

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.

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

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

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

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.

My head aches, my eyes burn, my arms and legs have given up, and my face in the mirror has a grayish cast. The bed, across the room, calls in its unmistakable lover's croon, Come to me, come, only I can make you truly happy, oh, how happy I'll make you, don't resist, remember how you moan with pleasure the instant we touch.....

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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

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

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

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

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.

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.

Every day that starts ‘let’s just try to have a better day than yesterday’ ends in a worse one. Who gave me this shitty advice - or did I make it up? Why am I setting myself such a high standard?

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...

The description given by a leading gastro-enterologist at the Mayo Clinic [of patients with chronic fatigue syndrome] remains accurate: 'the average doctor will see they are neurotic and he will often be disgusted with them'.

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).

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.

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.

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.

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

The deepening corruption of peer view for ME/CFS in the UK continues on wholly unrestrained by evidence, logic, and basic decency.

...patient evidence has repeatedly found that cognitive behaviour therapy is ineffective and graded exercise therapy can make the condition worse.

[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and... psychological factors played no role.

Validation is needed from the doctor ... once that is granted, the patient may assume the privileges of the sick role (sympathy, time off from work, benefits, etc.).

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. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs.

The claim that patients can recover [from ME/CFS] as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.

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.

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.

PACE trial is a fault line between the way we did medicine (secretive, clubbable) and the way we should do medicine (transparent, shared)... PACE is turning out to be the science controversy of the decade: it indicts the medical ecosystem of review

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.

The recommendation of graded exercise has caused untold physical damage to thousands of people. In fact, a 2018 survey found that 89% of ME sufferers experienced worsened symptoms after increasing activity. If graded exercise were a drug, it would have lost its licence.

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.

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.

However, there is no fixed rule that dictates when and if a symptom will appear. This group includes: •   Excessive shyness •   Diminished emotional responses •   Inability to make commitments •   Chronic fatigue or very low physical energy •   Immune system problems and certain endocrine problems such as thyroid malfunction and environmental sensitivities •   Psychosomatic illnesses, particularly headaches, migraines, neck and back problems •   Chronic pain •   Fibromyalgia •   Asthma •   Skin disorders •   Digestive problems (spastic colon) •   Severe premenstrual syndrome •   Depression and feelings of impending doom •   Feelings of detachment, alienation, and isolation (“living dead” feelings) •   Reduced ability to formulate plans

Mark Vink is a physician in the Netherlands who suddenly fell ill with chronic fatigue syndrome (ME/CFS). He wasn’t just your typical physician; he also happened to have a brown belt in judo, was the former captain of a Dutch national field hockey championship team and was a marathoner and triathlete. In other words, the guy was a stud who loved to test himself physically – the last person anyone would ever expect to get ME/CFS. Or end up bed bound. Or end up using a six yard tramp from his bed to the bathroom to test his exercise capacity. But that’s what happened. Mark Vink’s ME/CFS story – like many stories – is so striking in its suddenness and so devastating in its comprehensive that it beggars the mind to think that anyone could believe his downfall could have other than a physiological cause.

The psychological view of ME led to the controversial and now debunked PACE trial—PACE is “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation”... As the trial progressed and the results did not meet the authors’ expectations, they simply lowered the threshold to define improvement. In some cases, those whose condition had deteriorated were classed as “recovered”. That is simply not good science.

This is not an argument with psychiatry. Mental and physical illness are equally real and horrible. As with any long-term illness, some people with ME/CFS will develop comorbid depression and other mental health problems – where CBT can be of help alongside good quality general management. The argument here is with a flawed model of causation assuming efficacy for CBT and GET while taking no significant account of varying clinical presentations and disease pathways.

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.

As a physician bedridden with myalgic encephalomyelitis (ME) for more than a decade who is totally dependent on others, all thanks to a major relapse caused by GET, I am in a unique position to answer how harmful GET and cognitive behavioral therapy (CBT) really are. The basis of these therapies is false illness beliefs, meaning that it is all in the mind. These beliefs ignore all of the evidence that ME is a physical disease, such as intracellular immune dysfunctions, which not only restrict exercise capacity but also worsen with exercise (2).

ME/CFS has been classified as a neurological disease by the WHO since 1969 [59] and a growing number of researchers theorize that ME/CFS might be a neuro-immunological condition [60–63]: yet the BPS framework does not account for ME/CFS as a neurological or immunological disease – instead, much of the pro- BPS model literature on ME/CFS adopts what Nassir Ghaemi terms the ‘eclectic approach’; whereby everything appears important, all bio, all psycho, and all social factors [33]. Yet in clinical practice (the BPS framework), there is strong emphasis on psychological interventions (CBT and GET).

research shows that the experiences of patients, and the attitudes of health professionals, is mixed; nonetheless, we conclude that testimonial injustice – the deflation of CFS/ME patients’ testimony on the ground of unjustified negative stereotyping – appears to be a continued problem within mainstream healthcare across a range of settings and countries. Furthermore, it would seem that the testimonial injustice is sustained and also accompanied by hermeneutical injustice because the dominant group (health professionals) may routinely fail to provide adequate training about CFS/ME, leading to prejudiced deflations of patient credibility, and/or an unfair lack of shared concepts with which to make mutual sense of the experience of the patient.

Biopsychosocial discourse often portrays these patients as possessing unhealthy personality traits, such as ‘maladaptive perfectionism’ [67,68]; yet such assertions are not well supported, many studies find no significant differences between ME/CFS patients and the general population with regard to distinctive personality profiles [69–72]. A Swedish study of physicians’ attitudes to CFS found that physicians often downgrade the seriousness of this illness to ‘non-disease’ status and view patients as being ‘illness focused’, ‘demanding’, and ‘medicalising’ [73]. Given community-based doctors have limited knowledge of ME/CFS [74] and doctors display high levels of skepticism in this illness domain [75], it is unsurprising that many patients with ME/CFS report problematic clinical interactions [29–31,76]. Patient surveys conducted by patient organizations confirm high levels of patient dissatisfaction in the medical encounter.

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.