Cfs 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.”
― Hillary Johnson, Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic

“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.”
― David S. Bell M. D.

“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.”
― Jodi Bassett

“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.”
― Paul Cheney

“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.”
― 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.”
― Charlotte Blease

“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...”
― Mark Vink

“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).”
― Ellen de Visser

“Finally, individuals with severe pathological fatigue might experience states that are very different from what a healthy individual experiences when fatigued.”
― Leonard A. Jason

“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.”
― Megan A. Arroll

“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.”
― Keith Geraghty

“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.”
― Charlotte Blease

“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'.”
― Simon Wessely

“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.).”
― Simon Wessely

“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)”
― D Thompson, Chronic Fatigue Syndrome

“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.”
― Tracie White, The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son

“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?”
― Mary Dimmock, Severe ME : Notes for Carers

“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.”
― Megan A. Arroll

“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.”
― Alison C. Bested

“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.”
― Alison C. Bested

“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.”
― Alison C. Bested

“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”.”
― Alison C. Bested

“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).”
― Alison C. Bested

“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.”
― Ellen Wright Clayton

“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.”
― Sten Helmfrid

“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.”
― Roberto Patarca Montero

“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.”
― Benedetto Saraceno

“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.”
― Mark Vink

“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].”
― Mark Vink

“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.”
― Anil van der Zee