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Chronic Fatigue Syndrome Quotes

Browse 150 quotes about Chronic Fatigue Syndrome.

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.”

Coronavirus Covid 19 Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Coronavirus Quote Covid 19 Quotes Post Viral Fatigue Syndrome

Author:Anthony Fauci

“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.”

Fatigue Chronic Illness Cfs Chronic Fatigue Syndrome Me Cfs Chronic Fatigue Minimization Cfs Me

Author:Roberto Patarca Montero

“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.”

Chronic Fatigue Syndrome Me Cfs Ableism Me Cfs Quotes Chronic Illness Quotes Pushing Yourself Pushing Yourself To The Limit Chronic Illnes Beatin Overcoming Adversity Quote

Author:Whitney Dafoe

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Ad Hominem Psychologization Mentally Unstable Real Science

Book:Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Source: Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

“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.”

Cfs Chronic Fatigue Syndrome Allergies Cfids Dr Bell

Author:David S. Bell M. D.

“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”

Chronic Fatigue Syndrome Me Cfs Activists Me Cfs Quotes Pace Trial Death Threats Freedom Of Information Act

Author:Brian Kennedy

“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).”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Nhs Cfs Me Cost Cutting Invisible Illness Quotes Illness Stigma Nice Guidelines Societal Control

Author:Steven H. Woolf

“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).”

Injustice Bias Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Cognitive Behavior Therapy Psychologisation Biopsychosocial

Author:Keith Geraghty

“What about the claim, by the PACE trial, that Graded Exercise Therapy and CBT can treat ME? This is a trial where you could enter moderately ill, get worse in the trial, and be declared ‘recovered’ at the end. Even the recent follow-up study conceded that, long-term, Graded Exercise and CBT are no better for ME than doing nothing. Investigative journalists and academics alike have dismissed the PACE trial as ‘clinical trial amateurism’. Like MS or epilepsy, which were also once wrongly believed to be psychiatric disorders, ME is a neurological disease, and the World Health Organisation lists it as such. I am too weak to walk more than a few metres, needing to lie in bed 21 hours a day. With the little energy I have, I am an ME patient activist.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Misdiagnosis Epilepsy Cognitive Behavior Therapy Neurological Disorder Chronic Illness Stigma Cbt Pace Trial Clinical Trial Exercise Therapy

Author:Tanya Marlow

“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”.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Cognitive Behavioral Therapy M E Cfs M E Cognitive Behavior Therapy Cbt Pace Trial

Author:Alison C. Bested

“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’.”

Prejudice Stigma Chronic Fatigue Syndrome Myalgic Encephalomyelitis Chronic Fatigue False Assumptions Chronic Illness Stigma False Beliefs Medical Malpractice Illness Stigma Graded Exercise Unethical Treatment

Author:Tanya Marlow

“Do you find it strange that the COVID-19 vaccine was developed in just one year but Long COVID is still a mystery to the medical profession?”

Chronic Fatigue Syndrome Medical Profession Long Covid Pasc Developed Brain Fog One Year Covid 19 Vaccine Do You Find It Strange Still A Mystery

Author:Steven Magee

“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.”

Chronic Illness Chronic Fatigue Syndrome Me Cfs Pacing Post Exertional Malaise Me Cfs Quote

Author:Whitney Dafoe

“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.”

Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Pacing Chronic Fatigue

Book:Classic Pacing for a Better Life with ME

Source: Classic Pacing for a Better Life with ME

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Pacing M E Cfs M E Spoon Theory Spoonie

Author:Alison C. Bested

“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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Bad Science Pace Trial Stopget

Author:Carol Monaghan

“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.”

Fraud Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Quotes Bad Science Pace Trial Debunked

Author:Carol Monaghan

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Media Bias Marginalization Invisible Illness Stigma Iatrogenic Vilification Simon Wessely Bbc Bias

Author:Horace Reid

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

Pain Healing Chronic Illness Chronic Fatigue Syndrome Chronic Pain Sickness And Health

Book:Medicine Woman: Reclaiming the Soul of Healing

Source: Medicine Woman: Reclaiming the Soul of Healing

“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.”

Chronic Illness Chronic Fatigue Syndrome Panic Attacks Sickness And Health The Body Agoraphobia

Author:Jalina Mhyana

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Marginalization Invisible Illness Stigma Power Imbalance Iatrogenic Unethical Treatment Power Differential

Author:Charotte Blease

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

Vitamins Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Health Problems Vitamins And Supplements

Author:Bruce M. Carruthers

“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.”

Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Medical Profession Medical Research Invisible Illness M E Cfs Chronic Illness Stigma Medical Model Medically Unexplained Symptoms

Author:Joseph Dumit

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Gaslighting Me Cfs Invisible Illness Medical Gaslighting

Author:Toni Bernhard

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

Chronic Fatigue Syndrome Me Cfs Medical Gaslighting

Author:Jose Montoya

“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.”

Chronic Fatigue Syndrome Me Cfs Medical Gaslighting

Author:Charles Shepherd

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

Hope Promise Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Illness Quotes Severe Me

Author:Naomi Whittingham

“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.”

Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Illness Stigma

Author:Nina Muirhead

“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).”

Walking Exercise Marathon Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Severe Me

Author:Ellen de Visser

“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).”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Cognitive Behavioral Therapy Me Cfs Quotes Graded Exercise Therapy Cbt Stopget Chronic Fatigue Syndrome Quotes

Author:Maik Speedy

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Chronic Illness Stigma

Author:Nina Muirhead

“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?”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes

Author:Nina Muirhead

“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.”

Psychological Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Illness Quotes Cfs Quotes

Author:Betsy Keller

“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.”

Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Basal Ganglia

Author:Abhijit Chaudhuri

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Post Exertional Malaise Pem

Author:Anil van der Zee

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

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Nice Guidelines Biopsychosocial Model Unhelpful Thoughts

Author:Theo Anbu

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

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Pace Trial Stopget

Author:Carol Monaghan

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

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Beth French

Author:Beth French

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Neurological Disorder Neurological Disease

Author:Nina Muirhead

“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.”

Psychological Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Illness Quotes Cfs Quotes

Author:Betsy Keller

“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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Muscle Weakness

Author:Mark Vink

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Unscientific Psychosocial Biopsychosocial Model

Author:Steven Lubet

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Post Viral Fatigue Syndrome Illness Beliefs Postviral Fatigue Syndrome Pvfs

Author:Karen Prince

“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).”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Chronic Fatigue Syndrome Stigm

Author:Bruce Carruthers

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

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Post Exertional Malaise Chronic Fatigue Syndrome Quotes Exercise Intolerance Exertion Intolerance

Author:Todd E. Davenport

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

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Book:The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome

Source: The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome

“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”

Stigma Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Invisible Illness Stigma Invisible Illness Quotes

Author:Charlotte Blease

“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.”

Bias Stigma Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness

Author:Anthony L. Komaroff

“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.”

Discrimination Chronic Illness Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Psychologization Simon Wessely Wessely School

Author:Charlotte Blease

“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.”

Chronic Illness Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Psychologization

Author:Charlotte Blease