Chronic Fatigue Syndrome Quotes

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

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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'.

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.

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.

Severe, persisting fatigue is a prominent symptom of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), but individuals with this illness frequently report the occurrence of unique fatigue states that might be different from conventional symptoms of fatigue.

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.

The new name 'Chronic Fatigue Syndrome' is far too benign. It trivialises. How seriously would you take something called 'Chronic Thirst Syndrome'? And yet, diabetes is a very serious condition. 'Disabling Fatigue and Immune Dysfunction Syndrome' does a bit better; while more research should allow something more specific. (Thompson, 1992:27)

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.).

Luckily, we are seeing less and less post-exertional malaise, the symptom that stops Danny’s body and brain recovering properly after expending any energy, even just watching TV.

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

Finally, individuals with severe pathological fatigue might experience states that are very different from what a healthy individual experiences when fatigued.

Given what we have learned in the past eight years about this illness, it is intellectually embarrassing to suggest that ME is a psychological illness.

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.

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.

ME/CFS is not a rare illness, so how could doctors be getting it so wrong? Have we stopped believing in an entire class of patients for whom we don’t yet have the technology to diagnose or drugs to prescribe?

It’s absolutely retrogressive to suggest [ME] CFS is in the heads of patients. I have seen patients commit suicide, or have been otherwise destroyed, because some professor has diagnosed them as having a psychiatric illness.

The renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”, trivializes the substantial disability of the disease 1 – which can extend to the wheelchair or bed-bound requiring 24 hour care ME/CFS is characterized by neurological, immunological, gastrointestinal, cardiovascular and musculoskeletal features – severe forms can present with paresis, seizures, intractable savage headaches and life threatening complications.

In the cases of chronic fatigue syndrome and fibromyalgia, substantial evidence is now emerging that these syndromes may result from unusual infectious microorganisms that are not detected by the typical laboratory tests. Special, sophisticated lab tests such as polymerase chain reaction (PCR) tests can, however, detect these invaders. A growing number of peer reviewed papers are now confirming the presence of these microorganisms in these particular illnesses.

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.

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.

ME sufferers know full well that there is no present cure for this debilitating illness but equally they do not expect or understand why there is substantial denial within the medical profession of the existence of ME/CFS as a physical condition.

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

Chronic long-term fatigue, recurrent infections, recovery from long-term illness and infections, nervous exhaustion, chronic fatigue syndrome, chronic disease conditions with depression, low immune function, brain fog, and to accelerate recovery from debilitating conditions. Note: The plant is specific for the kinds of damage that occur during encephalitis infections. It is highly neuroprotective and strongly anti-inflammatory in the brain and CNS. It should be used in all encephalitis infections.

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.

I take no pleasure in, and set no store by, the suggestion that Professor Wessely effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness. Nevertheless, I am uncomfortable that the professor does not appear to be doing his utmost to clear the air on this issue.

Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’? This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, view themselves as healthy, and increase their exercise. The NHS guidelines amalgamate ME and Chronic Fatigue Syndrome, assuming symptoms are caused by deconditioning and ‘exercise phobia’. Sufferers are offered Graded Exercise to increase fitness, and Cognitive Behavioural Therapy (CBT) to rid them of their ‘false illness beliefs’.

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.

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.

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 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.

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.

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.

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

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.

The Wessely School rejects the significant body of biomedical evidence demonstrating that chronic “fatigue” or “tiredness” is not the same as the physiological exhaustion seen in ME/CFS and persists in believing that they have the right to demand a level of “evidence‐based” definitive proof that ME/CFS is not an “aberrant belief” as they assert, when their biopsychosocial model of “CFS/ME” that perpetuates their own aberrant belief about the nature of ME/CFS has been exposed by other psychiatrists as being nothing but a myth.

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).

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

Everything I thought I understood about disease research, drug development, and the delivery of clinical care has been turned on its head. This isn’t science or medicine as I had come to know them but rather a parade of psychogenic bias, neglect, bad science, flawed public policy, and the political agendas of powerful people and institutions that have sentenced ME patients to the medical equivalent of the most squalid slum in the poorest country on earth. The political decisions taken over the last thirty years have polluted research, perverted clinical care, and shipwrecked ME patients with a life-threatening dose of stigma, disbelief and medically induced harm.

ME/CFS is not synonymous with depression or other psychiatric illnesses. The belief by some that they are the same has caused much con- fusion in the past, and inappropriate treatment. Nonpsychotic depression (major depression and dysthymia), anxiety disorders and somatization disorders are not diagnostically exclusionary, but may cause significant symptom overlap. Careful attention to the timing and correlation of symptoms, and a search for those characteristics of the symptoms that help to differentiate between diagnoses may be informative, e.g., exercise will tend to ameliorate depression whereas excessive exercise tends to have an adverse effect on ME/CFS patients.

Characteristics of CFS/ME include persistent mental and physical fatigue accompanied by a range of neurological, autonomic, neuroendocrine, immune and sleep difficulties (Carruthers et al., 2003). In turn, these manifestations produce a range of functional limitations including severe cognitive impairments (e.g. problems with attention, problem-solving, concentration, memory and verbal communication) and debilitating physical difficulties such as problems with general mobility and self-care, shopping, food-preparation and housekeeping (Taylor & Kielhofner, 2005). These impairments are often acute and enduring, impacting upon an individual’s personal, occupational and social lives.

ME/CFS has a greater negative impact on functional status and well-being than other chronic diseases, e.g., cancer or lung diseases[8], and is associated with a drastic decrement in physical functioning[9]. In a comparison study[10] ME/CFS patients scored significantly lower than patients with hypertension, congestive heart failure, acute myocardial infarction, and multiple sclerosis (MS), on all of the eight Short Form Health Survey (SF-36)[11] subscales. As compared to patients with depression, ME/CFS patients scored significantly lower on all the scales, except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher.

When people with ME/CFS report symptoms of post-exertional malaise, those symptoms are independent of emotional distress, but when the general population report what they think are post-exertional malaise symptoms, their symptoms of post-exertional malaise are significantly related to emotional distress. It is possible that because healthy individuals experience a relationship between emotional distress and post-exertional malaise, they might believe that these two domains are connected for themselves and by inference with patients with ME/CFS, when in fact it is not the case. This ultimately might blur the ability of healthy controls to understand the experience of post-extertional malaise for people with ME/CFS.

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.

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

Patients who develop ME/CFS often lose the natural antidepressant effect of exercise, feeling worse after exercise rather than better. Patients may have a drop in body temperature with exercise. Thus fatigue is correlated with other symptoms, often in a sequence that is unique to each patient. After relatively normal physical or intellectual exertion, a patient may take an inordinate amount of time to regain her/his pre-exertion level of function and competence. For example, a patient who has bought a few groceries may be too exhausted to unpack them until the next day. The reactive fatigue of post-exertional malaise or lack of endurance usually lasts 24 hours or more and is often associated with impairment of cognitive functions. There is often delayed reactivity following exertion, with the onset the next day, or even later.

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.