Cfs Me Quotes

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.

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

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.

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.

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.

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.

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

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.

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

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.

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.

For those who have been dealing with ME/CFS as a disease over time, social distancing with avoidance of infections has been a way of life. If anything, seeing the rest of the world trying to understand how to effectively achieve this way of life has been a déjà vu because for many, this has been a way of life since their diagnosis.

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.

[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.

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

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.

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.

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!

You have no idea what I have been through or how hard I have tried to wait out, overcome, and make the best of a devastating illness that has slowly made all of my dreams more and more difficult to achieve.

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?

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...

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.

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.

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.

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.

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).

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.

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.

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.

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.

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

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.

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

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.).

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.

Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it.

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

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.

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!

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.

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.

Pacing is much easier if you try to live life, but within your limitations. Luckily, pacing often makes it possible to have a life despite ME. It might be a small life, but it will still be your own.

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.

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'.

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.

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.

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.

When our bodies are under stress, we can’t make our natural cannabinoids. This is certainly true of those with ME/CFS and children with autism, as well as those with cancer. It might surprise you to discover that besides hemp and cannabis, the only other rich source of naturally occurring cannabinoids can be found in mother’s milk. Yes, that’s right, mother’s milk has cannabinoids. How many wonderful things can we say about what Mother Nature has provided us in mother’s milk?

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

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.

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.

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.

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.

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).

This is something that has been going on forever,” Craig Spencer, the director of global health in emergency medicine at Columbia University, says about the variability of human response to infection. “I wouldn’t be surprised if people are walking about with long Epstein-Barr virus, or long influenza. We all know someone who is low energy, who’s told to work harder. We have all heard about chronic Lyme sufferers, and those with ME/CFS. But they get written off.” Spencer understands something about how infections can do long-term damage, because he contracted Ebola while working in Guinea, fell ill upon his return to New York City, and then struggled with the virus’s ongoing effects. (Studies have suggested that the Ebola virus may linger in the body for years.) The difference between long COVID and other infection-associated illnesses is that it is happening “on such a huge scale—unlike anything we’ve seen before. It is harder for the medical community to write off,” Spencer told me. Indeed, many researchers I spoke with for this book hope that the race to understand long COVID will advance our understanding of other chronic conditions that follow infection, transforming medicine in the process.

On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength. He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28‐30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.

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.

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)

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.

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”.

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.

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.

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.

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.

Patient use of herbal/natural remedies should be identified to reveal likely side effects and avoid potential conflicts with prescribed medications. Patients may not know that “natural” does not necessarily mean “better” or “safe.” As with medication, small doses should be used initially with warnings about adverse reactions. Some herbs with pharmacological effects have been traditionally incorporated in the diet, e.g., herbal teas of peppermint, ginger or chamomile for gastrointestinal symptoms or for improving sleep.

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).

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.

Abraham Lincoln’s purported remark to Harriet Beecher Stowe, “So you’re the little woman who wrote the book that started this great war!

people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)

(The blood vessels) must be constricted so tight in the brain that little blood gets through. Perhaps it is one of the hormones that constricts blood vessels. Perhaps an infection of the blood vessels. Perhaps it is an excessive sensitivity of the blood vessels to adrenaline….CFS is a devastating physiologic process that undermines the body’s energy and the brain’s cognitive ability….CFS is not…an illness behaviour for lazy people. The consequences of this illness weigh heavily not only on the victim, but also on family, community and society.

The most important limitation of [clinical] guidelines is that the recommendations may be wrong... Practices that are sub-optimal from the patient’s perspective may be recommended to help control costs, serve societal needs, or protect special interests (those of doctors…or politicians, for example).

It [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.

Individuals are often stigmatized and told their illness isn’t real… People with [ME] CFS face an incredible burden just getting doctors to take their symptoms seriously

The term “myalgic encephalomyelitis” (muscle pain, “myalgic”, with “encephalomyelitis” inflammation of the brain and spinal cord) was first included by the World Health Organization (WHO) in their International Classification of Diseases in 1969. It is ironic that Donald Acheson, who subsequently became the Chief Medical Officer first coined the name in 1956.8 In 1978 the Royal Society of Medicine accepted ME as a nosological organic entity.9 The current version of the International Classification of Diseases—ICD‐10, lists myalgic encephalomyelitis under G.93.3—neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.

In summary, patients with CFS are not “deconditioned”. Neither their muscle strength nor their exercise capacity is different from that of other sedentary members of the community (>70%). We remain unaware of any incontrovertible evidence that the various “exercise training” programs suggested in previous articles improve either the physiological or clinical status of people with CFS.

There is rightful objection to the denial of appropriate investigations and to the nationwide implementation of behavioural modification as the sole management strategy for the nosological disorder ME/CFS. That strategy is believed to be based on (i) the commercial interests of the medical and permanent health insurance industry for which many members of the Wessely School work and (ii) the dissemination of misinformation about ME/CFS by the Wessely School, whose members also act as advisors to UK Government agencies including the DWP, which it is understood has specifically targeted “CFS/ME” as a disorder for which certain State benefits should not be available.

ME has been classified as a neurological condition at least since 1968 (this should have been 1969)…however, for all these years, sufferers from this awful debilitating illness have been ignored, derided and mistreated…. Many thousands of peer-reviewed scientific papers from researchers around the world demonstrate that ME is a physical disease which has endocrine, immune and cardiovascular effects, as well as neurological symptoms…. It is distinct from chronic fatigue which is a symptom of many diseases….

The neurological/cognitive symptoms are more characteristically variable than constant and often have a distinct fatiguing component to them. Especially common are cognitive ‘fog’ or confusion, slowed information processing speed, trouble with word retrieval and speaking or intermittent dyslexia, trouble with writing, reading, and mathematics, and short-term memory consolidation.

In general, fatigue is not as severe in depression as in ME/CFS. Joint and muscle pains, recurrent sore throats, tender lymph nodes, various cardiopulmonary symptoms (55), pressure headaches, prolonged post-exertional fatigue, chronic orthostatic intolerance, tachycardia, irritable bowel syndrome, bladder dysfunction, sinus and upper respiratory infections, new sensitivities to food, medications and chemicals, and atopy, new premenstrual syndrome, and sudden onset are commonly seen in ME/CFS, but not in depression. ME/CFS patients have a different immunological profile (56), and are more likely to have a down- regulation of the pituitary/adrenal axis (57). Anhedonia and self- reproach symptoms are not commonly seen in ME/CFS unless a concomitant depression is also present (58). The poor concentra- tion found in depression is not associated with a cluster of other cognitive impairments, as is common in ME/CFS. EEG brain mapping (59,60) and levels of low molecular weight RNase L (21,26) clearly distinguish ME/CFS from depression.

The Medical Research Council’s PACE Trial of behavioural interventions for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) attracted considerable opposition from the outset and the Principal Investigators had difficulty in recruiting a sufficient number of participants. PACE is the acronym for Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation, interventions that, according to one of the Principal Investigators, are without theoretical foundation. The MRC’s PACE Trial seemingly inhabits a unique and unenviable position in the history of medicine. It is believed to be the first and only clinical trial that patients and the charities that support them have tried to stop before a single patient could be recruited and is the only clinical trial that the Department for Work and Pensions (DWP) has ever funded.

The finding that ME and CFS group had more functional limitations and more serious symptoms than those with MS [multiple sclerosis] provides additional evidence to the seriousness of ME and CFS.

Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition characterized by severe unexplained fatigue and a mixed profile of symptoms such as sore throat, painful/swollen lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, post-exertional malaise and cognitive difficulties (K. Fukuda et al., 1994).

the disabling fatigue experienced by individuals with ME/CFS differs from that associated with other illnesses or everyday activity

Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion.

The diagnostic criteria for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) define two distinct clinical entities. Cognitive impairment and post-exertional “malaise” (a long-lasting aggravation of typical symptoms, e.g., muscle weakness and cognitive “brain fog”, after minor exertion) are obligatory for the diagnosis ME, while chronic fatigue is the only mandatory symptom for the diagnosis CFS.

Many people confuse “chronic fatigue” (which is a symptom of many chronic conditions, including rheumatoid arthritis, fibromyalgia, or lupus) or “general tiredness” (which is lifestyle-related), with the specific illness “chronic fatigue syndrome” (ME/CFS). To clarify the differences, here are some of the major symptoms of ME/CFS: - unexplained physical and mental fatigue for an extended period of time - post-exertional malaise (meaning an inappropriate loss of physical and mental stamina and a worsening of symptoms after any effort) - sleep dysfunction - pain - neurological/cognitive manifestations - autonomic manifestations, such as orthostatic intolerance - neuroendocrine symptoms, such as subnormal body temperature - immune system changes, such as recurrent flu-like symptoms.

individuals with ME/CFS experience different types of fatigue than what are reported in the general populations

For 13 years now I have suffered. I have lost my job that I loved, my financial independence, my social life, my friends, my ability to leave the house when I want to or do the things when I want to instead my body does the dictating now.

I have seen three beautiful young girls in their 30's within the last few years pass away due to this illness, who not only fought their battles with this illness but who played an important role in raising awareness of ME. Yes you can die as a result of having ME if you become at the severe end of it which 25% do.

I wake up every morning, thinking that this can't really be happening. What parallel universe have I entered?

Over the years, I have cared for loved ones with advanced Alzheimer, late stage cardiovascular and renal disease and Stage 4 cancer. But none of those experiences prepared me for being a carer for a Severe or Very Severe ME patient. The breadth, severity and unprediciability of the symptoms and dysfunction from one person ro the next and from one day to the next can be hard to comprehend and mainstream medical education doesn't help.

How do I deal with my own frustration and outrage at the injustice of what has happened to my son and all ME patients and with my own inadequacies and inability to change that?

The label ‘Chronic Fatigue Syndrome’ was first proposed by Holmes et al. (1988) of the Centers for Disease Control (CDC). This name was recommended to replace that of a number of terms that implied a causal pathology (e.g. ‘Myalgic Encephalomyelitis’, ‘Post-Viral Fatigue Syndrome’ and ‘chronic Epstein-Barr virus syndrome’), as there was a lack of correlation between biological markers and symptomatology. Hence, this new label reflected the prime clinical characteristic of the condition without alluding to an underlying physical aetiology and, in turn, the definition was based upon signs and symptoms of the patient group. However, many individuals use the term Myalgic Encephalomyelitis (indicating muscle pain and inflammation of the brain), a fact that is reflected by the titles of the two largest charitable organisations in the UK, the ME Association and Action for ME.

Malaise” is a general body discomfort or weakness, often marking the onset of an of infection/flu-like illness or other disease. Fatigue and flu-like symptoms are linked to activation of the immune system and research scientists are in the process of unraveling these mechanisms in ME/CFS.

This is an example of pacing when shopping. Break shopping into multiple steps: 1) rest at home before driving the car to the store, 2) drive to the store, 3) rest, lying down in the car after driving to the store, 4) shop for 30 min in the store, 5) rest lying down in the car before going home, 6) drive home and 7) rest at home.

To differentiate between symptoms of depression and anxiety secondary to ME/CFS and psychiatric disorders, ask the patient what they will do the next time they have a “good day”. A patient with ME/CFS will have a long list of ideas whereas a patient with major depressive disor- der will say they can not think of anything they enjoy any more. Patients with an anxiety disorder will have a list of reasons why they won’t be able to do or enjoy the activities.

Historically in the literature CBT [Cognitive Behavioral Therapy] was inappropriately touted as a cure for patients with ME/CFS if they changed their “belief system”. ME/CFS is a physical illness and not a psychological illness, therefore CBT cannot cure ME/ CFS. What CBT can do is to help patients cope with being chronically ill and manage their emotional reactions better so that they do not waste valuable energy on worrying or feeling guilty about things that they cannot control. We like to think of CBT as “emotional energy conservation”.

ME/CFS is a complex condition that affects every organ system in the body. There is evidence of inflammation at the cellular and biochemical levels: in the muscles, brain and spinal cord in patients with ME/CFS. The name for this illness has had a huge impact on the medical, scientific and patient communities – how it is viewed and how patients are treated by the medical community (160).

There are many reports that suggest a biomedical basis for post-exertional malaise. This is inconsistent with the assumption that there is pathological avoidance of exertion in ME/CFS, and makes it difficult to believe that exercise leads to improvement.

To replace ME/CFS, the [Institute of Medicine] committee proposes the name systemic exertion intolerance disease, or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort— physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives.

Several studies have focused on identifying an infectious agent as the cause of CFS/ME, and the EBV has received a lot of attention over the past two decades.

I have a wish and a dream that medical and scientific societies will apologise to their ME patients.

the time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years.

Post-exertional malaise (PEM) is the hallmark clinical feature of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post-viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organization (WHO) has not changed its position on these disorders... Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category. Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome is included in this category. However, post-viral fatigue syndrome is explicitly excluded from F48.0.

The diagnosis ME requires both M and E problems, whereby M stands for Myalgic i.e. muscle pain and muscle energy production problems and E for Encephalomyelitis, i.e. specific neurological, neuroimmune and neurocognitive problems.

So, here’s the story about that: I was a member of ACT-UP in New York for two years, from its inception in 1986. I was a young gay man and everyone I knew was dying. In 1988, I moved to San Francisco to become a newspaper reporter at the San Francisco Chronicle, and that ended my life as an “activist.” To attribute my current work on PACE and related issues to what I did 30+ years ago is preposterous. My opinion that the PACE trial is a piece of crap and likely qualifies as research misconduct is based upon my public health training and expertise.

Myalgic Encephalomyelitis is a systemic disease with many systemic features but it is characterised primarily by CNS dysfunction and not by fatigue.

Omaha native Paul Stratman spent forty-four years in the electrical trade, laying wire, managing people, and eventually doing 3D modeling. Then he retired. Dissatisfaction soon set in. “My wife had a long list of things she wanted done around the house,” Paul said, “but that took me less than a year to complete. And I certainly didn’t want to just sit around the house doing nothing for the rest of my life. I wanted to help people.” About this time, he heard about a group of retired tradesmen in the Omaha area who call themselves the Geezers. Several times each week, for a half day at a time, a group of five to ten Geezers meets in North Omaha (a poorer part of town) to rebuild a house for later use by a nonprofit. “Currently, we’re rebuilding a home that will house six former inmates,” Paul told me. “We’re providing the home, and the nonprofit will provide the mentorship when the gentlemen move in.” The goal is to help formerly incarcerated people build better lives and stay out of jail. The rate of recidivism in the United States reaches as high as 83 percent.[12] “Our goal is zero percent among the men who will occupy this home when we are finished,” Paul said. On a previous occasion, after the devastating 2019 midwestern floods, Paul was working as a volunteer in the area to restore electricity to many of the homes when he received an urgent phone call concerning a couple in their fifties whose home had been destroyed in the flood. The couple were living in a camper with their teenage daughter and three grandkids (whose mother was unable to take care of them) while they tried to get enough money to fix their house. Six people in a tiny camper! The couple were worried because they had been informed that someone from Nebraska’s Division of Children and Family Services would be coming to inspect the living conditions for the three grandkids. The couple feared their grandkids were going to be taken from them. They were almost frantic to prevent that. Would Paul help? Paul went right to work. He completed the electrical wiring and safety renovations inside the flood-damaged home, free of charge, in time for it to pass inspection by CFS. The family stayed together. Reflecting on this experience, Paul said, “When you can help people that are so desperate, and can make a little difference in their lives—people who have put their lives on hold to care for the needs of someone else—it is moving. That was one of the most emotional experiences I’ve ever had and some of the most meaningful work I’ve ever accomplished.” Paul has retired from his job, but he hasn’t stopped working for others.

CpG islands, they’re very high, density of guanine and

It might sound strange but walking back and forth to the toilet is more difficult than running a marathon. However if you see my lactate levels of 8.0 mmol/l around the 5 minute mark, and 11.8 mmol/l around the 30 minutes mark, both produced by the same exercise, it means that the actual lactate production for this very trivial exercise is 19.8 mmol/l. That is a level that many professional athletes will never / not often reach and that sort of level of lactate makes it easy to understand why this trivial walk is so strenuous an exercise for me and more difficult than running a marathon. And it is therefore no wonder that I have severe loss of muscle power combined with severe muscle pain from this trivial walk to the toilet and back.

For ME patients, activity overreaching equals symptom exacerbation, including decreased functional capacity. It’s a predictable action and reaction that is borne out by numerous and replicated physiological studies. 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.

There's nothing the medical world can do to cure you, you just live with it [M.E.].

From my experience of ME/CFS there was no psychological component whatsoever, besides which exercise, if anything, was making me worse not better. I was not deconditioned or frightened to exercise. The symptoms were more consistent with a brain tumour or multiple sclerosis. The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42.

Remarkably, though sadly predictably, British psychiatrists still cling to the psycho-social model that has subverted meaningful research for the past 30 years, establishing the validity of Max Planck's observation that science progresses one retirement at a time.

...exercise has not been shown to produce a long term cure for ME/CFS and studies have not shown that exercise reverses the pathophysiological changes found in this illness... ...for many patients, adding an injudicious exercise program has caused post exertional malaise and deterioration of function

Activities of daily living utilize energy and are in themselves, exercise. These activities may constitute an optimum amount of exercise for some patients or an excessive amount of exercise for others while for some patients, adding a suitable exercise program (exercise therapy) can improve function and quality of life.

The disabling weakness and exhaustion a person with ME/CFS experiences is so profound that "fatigue" is ...probably an insult.

Now, at last, medicine has decided to recognize our problem. This is a tremendous beginning, but by defining Chronic Fatigue Syndrome to the public with such a benign name, a name that gets confused with simple (often stress-related) fatigue, you have placed yet another burden on us.

The tiredness of M.E. or Chronic Fatigue Syndrome is so different to normal tiredness. We all say "I'm so tired". No you're not because you are still standing. The tiredness of M.E. is so different because it doesn't get better when you rest. It is tiredness through your bones. It is such a profound weariness. It's not due to muscle weakness. It is not loss of motivation or pleasure such as you get in people who are depressed. It is just exhaustion to your bones.

While there are now fresh moves to revise NICE guidelines on CFS/ME in the United Kingdom, these advances are likely to have been hindered by the scale of epistemic injustices experienced by patients with ME/CFS (NICE 2017). Of the valuable participants in the ongoing discourse about ME/CFS, it is patients who are not only the most vulnerable but have the most to lose.

The severe exacerbation of symptoms following exercise, as seen in CFS patients, is not present in other disorders where fatigue is a predominant symptom such as depression, rheumatoid arthritis, systemic lupus erythematosus, or multiple sclerosis. 10,11

The largest and most recent ME Association survey (ME Association, 2015) of patient evidence on the acceptability, efficacy and safety of CBT, GET and Pacing involved 1428 respondents. In this case, 73 per cent of respondents reported that CBT had no effect on their symptoms and 74 per cent reported that their symptoms were made worse by GET.

The Commissioner asserts 'motivated intruders' evidence from Professor Anderaon was accepted under cross-examination as an 'over-extension' from his personal experiences with completely unrelated animal rights activists - see para.24 of the closing submissions, Professor Anderson's "wild speculations" about the possibility of "young men, borderline sociopathic or psychopathic" attaching themselves to the PACE trial criticism 'do him no credit". Nor do his extrapolations from benign Twitter requests for information to an "organised campaign” from an "adversarial group" show that he has maintained the necessary objectivity and accuracy that he is required to maintain. He does not distinguish between legitimate ethical and political disagreement, and the use of positions of access to confidential data. He stated that where there was legitimate disagreement one should assume that people will act in unlawful ways, This proposition that one should in every case assume the absolute worst about data disclosure is clearly neither sensible nor realistic. Freedom of Information Act tribunal judgment

My very high lactate levels after this trivial walk also show that this trivial walk is very strenuous exercise for me which I have been doing twice a day for a number of years and if exercise would really be the answer to this disease, on the one hand I would not have fallen ill with this disease and on the other I would have long exercised myself back to full fitness as my very high lactate levels show that I do my upmost.

The study by Falk Hvidberg et al. [69] confirms the findings from the health status report by Komaroffet al. from 1996 [70]. It also means that nothing has changed in the health situation of ME/CFS patients in the last 20 years and that means that the current 2 available treatments, CBT and GET, which have been heavily promoted for more than 20 years as the treatments for ME/ CFS, which most ME patients have tried, because they desperately want to get better, are not effective at all, or even harmful, as patients have been saying for a long time [32] which was confirmed and objectified by Black et al. [31].

ME is a neuroimmune disease that, contrary to common misconceptions, is not characterised by chronic fatigue, but rather by a severe exacerbation of symptoms which manifest after a minor physical or mental exertion. This hallmark symptom characteristic of ME, known as Post-Exertional Malaise (PEM), can persist for days, weeks or consequently be a the trigger for a relapse or deterioration.

After a patient of his with pneumonia coughed in his face, Vink’s energy and endurance quickly tanked. He estimated that from one day to the next he lost 70-80% of the power in his legs. Very quickly this former marathoner was unable to walk 30 yards without having to rest for 15 minutes. He also experienced severe dizziness, headaches (for the first time in his life) and problems sleeping. Graded exercise therapy (GET) caused him to relapse further and he ended up bedridden.

We believe CFS is a biological illness, manifest with complex interlinking between adverse thoughts, moods, emotions and physical symptoms.

Many who were able to walk when they embarked on a course of graded exercise dropped out of the treatment in wheelchairs or bedbound.

Patients find GET harmful Since patient surveys ask whether symptoms got worse, therapies can also be ranked in terms of which cause the most harm. In three large surveys, GET consistently ranked highly for harm, meaning that a higher proportion of patients reported that their symptoms worsened with GET than with other approaches. GET ranked 2nd most harmful of 20 therapies, 1st of 25 and 1st of 15 (Action for ME, 2014: 19; The ME Association, 2010: 10; Action for ME, 2008: 13, respectively).

PVFS (post-viral fatigue syndrome) This term was introduced during the eariy 1980s in Britain as an alternative to ME. It remains a useful description for anyone whose illness can clearly be traced back to an acute viral infection. The drawback to PVFS is that it cannot be used to describe cases where some other factor (e.g. vaccination or pesticide) acted as the principal trigger.

It was some months before I acknowledged to myself that I had not improved, that I wasn't simply tired because I'd gone back to work, that my muscles ached regardless of whether I rested, and that the symptoms had remained a constant presence since their initial onset. Some symptoms such as the muscle pain were becoming worse. I went back to the medical practitioner. I was now diagnosed with post-viral syndrome... After 11 months from the initial onset, the medical practitioner told me that she thought I might have CFS.

Characteristically, after an initial viral insult patients have relapsing and remitting mental and physical exhaustion, which is brought on by varying degrees of physical and mental exertion and relieved by rest, the fatigue often being accompanied by consistent associated symptoms. These people cope at a reduced level of activity because of ill health, not fear of ill health.

The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

Could many cases of cancer be the consequence of a decades-long retroviral infection? The implications of this would be mind-boggling, shifting at least some cancer research into the field of infectious disease.

Given a healthy immune response and no other complicating factors, it seemed this retrovirus could live in many men for years and even decades without causing any noticeable problems. But as the men aged, and the functions of their immune system started to break down, the retrovirus might begin the chain of events that led to prostate cancer.

CFS IS A MISLEADING LABEL Many argue that the label "Chronic Fatigue Syndrome" contributes to the disorder's lack of legitimacy because it emphasizes only one symptom "fatigue," which is such a common and non-specific symptom. The name fails to convey that the mental and physical fatigue in CFS are not substantially relieved by rest nor that exertion worsens symptoms. The lack of mention of physical signs and symptoms in the label allows the inclusion of a very heterogeneous group of less severely ill patients to be considered under the rubric of CFS. As a result many research hypotheses and findings may not pertain to patients with tightly defined CFS who have multisystemic involvement.