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Me Cfs Quotes

“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)”

CfsChronic Fatigue SyndromeMe CfsMe Cfs QuotesInvisible Illness StigmaInvisible Illness QuotesBiopsychosocial
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.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsWorld Health OrganizationNeurasthenia
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.”

ExerciseTreatmentChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsNhsGraded Exercise TherapyCbtCfs MeStopget
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.”

ExerciseCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMe Cfs QuotesGraded Exercise TherapyStopget
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.”

DisabilityChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsInvisible Illness StigmaIatrogenicSimon Wessely
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.”

ControversyAuthoritarianismCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsDerisionAuthority And AttitudeSimon WesselyHate Campaign
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.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsCognitive Behavioral TherapyGraded Exercise TherapyInvisible Illness StigmaCbtIllness BeliefsGraded ExerciseIatrogenic Harm
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.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsInvisible Illness QuotesIllness Stigma
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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“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.”

Myalgic EncephalomyelitisMe CfsInvisible Illness StigmaMedically Unexplained SymptomsSomatic SymptomsSomatizationSomatoformMisfiagnosis
Author:Per Dalén
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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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsWelfare BenefitsChronic Illness StigmaDisability BenefitsDwpIllness BeneftsDepartment Of Work And PensionsWesseley School
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.”

CfsChronic Fatigue SyndromeMe Cfs
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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“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.”

HerbsMe CfsAlternative MedicineHerbal MedicineHerbal RemediesNatural RemediesNatural AlternativesHerbal Supplements
Author:Fred Friedberg
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“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsNeurological Disorder
Author:Malcolm Hooper
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“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.”

CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsGraded Exercise TherapyGraded Exercise
Author:Garry C. Scroop
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“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsWelfare BenefitsChronic Illness StigmaDisability BenefitsDwpIllness BeneftsDepartment Of Work And Pensions
Author:Malcolm hopper
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“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.”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsWelfare BenefitsChronic Illness StigmaDisability BenefitsDwpIllness BeneftsDepartment Of Work And Pensions
Author:Malcolm hopper
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“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….”

Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsChronic FatigueCfs Me
Author:Countess of Mar
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“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.”

CognitiveChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsChronic FatigueCfs MeBrain FogConcentration Problems
Author:Bruce M. Carruthers
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“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.”

DepressionChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsMisdiagnosisChronic FatigueCfs Me
Author:Bruce M. Carruthers
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