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Chronic Fatigue Syndrome Quotes

Browse 150 quotes about Chronic Fatigue Syndrome.

Chronic Fatigue Syndrome Quotes

“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsCognitive Behavioral TherapyChronic Illness QuotesIllness Beliefs
Author:Charles Shepherd
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“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.”

InjusticeBiasChronic Fatigue SyndromeMe CfsInvisible Illness StigmaPsychologisation
Author:Charlotte Blease
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“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.”

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Author:Keith Geraghty
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“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.”

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Author:Charlotte Blease
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“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)”

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Book:Chronic Fatigue Syndrome
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“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.”

ExerciseChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesMark Vink
Author:Cort Johnson
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“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.”

InjusticeBiasAuthoritarianismChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsHealth ServiceStigna
Author:Charlotte Blease
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“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.”

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Author:Benedetto Saraceno
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“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).”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsGraded Exercise TherapyStopget
Author:Karen Kirke
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“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.”

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Author:Charles Shepherd
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“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.”

ExerciseChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesGraded Exercise TherapyMark Vink
Author:Cort Johnson
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“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.”

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Author:Mark Vink
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“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].”

ExerciseCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesGraded Exercise TherapyStopget
Author:Mark Vink
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“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.”

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Author:Byron Hyde
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“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.”

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Author:Michael Hanlon
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“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.”

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Author:Anthony Komaroff
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“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”.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsNeurological DisorderInvisible Illness StigmaSimon WesselyNeurological ProblemsWessely School
Author:Margaret Williams
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“(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.”

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Book:Faces of CFS
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“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsInvisible IllnessM E CfsM EInvisible Illness Stigma
Author:Sonya Chowdhury
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“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!”

FatigueChronic IllnessChronic Fatigue SyndromeMyalgic EncephalomyelitisMe Cfs
Author:Jane Cuozzo
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“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.”

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Author:Malcolm hopper
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“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsIllness BeliefsWesseley SchoolAberrant BeliefIllness BehaviorsStick Role
Author:Malcolm hopper
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“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMalaiseChronic FatigueCfs MeHeaded Exercise Therapy
Author:Bruce M. Carruthers
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“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.”

ExerciseDepressionMental HealthMental IllnessChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMental DisorderChronic FatigueCfs Me
Author:Bruce M. Carruthers
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“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.”

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Author:Leonard A. Jason
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“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.”

ExerciseChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsGraded Exercise Therapy
Author:Malcolm hopper
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