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Me Cfs Quotes

“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.”

FatigueChronic IllnessCfsChronic Fatigue SyndromeMe CfsChronic FatigueMinimizationCfs Me
Author:Roberto Patarca Montero
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“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 SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesAd HominemPsychologizationMentally UnstableReal Science
Book:Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
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“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 SyndromeMe CfsActivistsMe Cfs QuotesPace TrialDeath ThreatsFreedom Of Information Act
Author:Brian Kennedy
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“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).”

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Author:Steven H. Woolf
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“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).”

InjusticeBiasChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsCognitive Behavior TherapyPsychologisationBiopsychosocial
Author:Keith Geraghty
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“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 IllnessChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsPacingChronic Fatigue
Book:Classic Pacing for a Better Life with ME
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“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.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMarginalizationInvisible Illness StigmaPower ImbalanceIatrogenicUnethical TreatmentPower Differential
Author:Charotte Blease
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“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).”

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Author:Ellen de Visser
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“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).”

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Author:Maik Speedy
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“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.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesPost Exertional MalaisePem
Author:Anil van der Zee
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“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 SyndromeMyalgic EncephalomyelitisMe CfsNeurological DisorderNeurological Disease
Author:Nina Muirhead
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“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.”

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Author:Betsy Keller
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“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.”

ExerciseChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesGraded Exercise TherapyMuscle Weakness
Author:Mark Vink
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“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 SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesPost Viral Fatigue SyndromeIllness BeliefsPostviral Fatigue SyndromePvfs
Author:Karen Prince
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“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 SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesChronic Fatigue Syndrome Stigm
Author:Bruce Carruthers
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“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.”

BiasStigmaChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsInvisible Illness
Author:Anthony L. Komaroff
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“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.”

DiscriminationChronic IllnessCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesPsychologizationSimon WesselyWessely School
Author:Charlotte Blease
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“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 IllnessCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesPsychologization
Author:Charlotte Blease
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“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.”

InjusticeBiasStigmaCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsInvisible Illness Stigma
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.”

Chronic IllnessCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesPsychologization
Author:Charlotte Blease
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