Cfs Me Quotes

“The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane.”
― Paul Cheney

“I take no pleasure in, and set no store by, the suggestion that Professor Wessely effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness. Nevertheless, I am uncomfortable that the professor does not appear to be doing his utmost to clear the air on this issue.”
― Frederick R.P. Curzon

“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.”
― Bruce M. Carruthers

“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.”
― Bruce M. Carruthers

“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

“...patient evidence has repeatedly found that cognitive behaviour therapy is ineffective and graded exercise therapy can make the condition worse.”
― Charles Shepherd

“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).”
― Steven H. Woolf

“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….”
― Countess of Mar

“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.”
― Bruce M. Carruthers

“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.”
― Bruce M. Carruthers

“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

“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.”
― Charles Shepherd