M E Quotes

“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.”
― Sonya Chowdhury

“All I ask of all my friends is that they understand this is truly a devastating neurological illness and not just about being a bit tired because its way and above beyond that.

One day ME will be unravelled by the many researchers working tirelessly around the world I hope it's in my lifetime!”
― Tracey Browett, Severe ME : Notes for Carers

“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

“Luckily, we are seeing less and less post-exertional malaise, the symptom that stops Danny’s body and brain recovering properly after expending any energy, even just watching TV.”
― Sonya Chowdhury

“Severe, persisting fatigue is a prominent symptom of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), but individuals with this illness frequently report the occurrence of unique fatigue states that might be different from conventional symptoms of fatigue.”
― Leonard A. Jason

“ME/CFS has a greater negative impact on functional status and well-being than other chronic diseases, e.g., cancer or lung diseases[8], and is associated with a drastic decrement in physical functioning[9]. In a comparison study[10] ME/CFS patients scored significantly lower than patients with hypertension, congestive heart failure, acute myocardial infarction, and multiple sclerosis (MS), on all of the eight Short Form Health Survey (SF-36)[11] subscales. As compared to patients with depression, ME/CFS patients scored significantly lower on all the scales, except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher.”
― Frank Twisk

“The people in whom CFS often takes a hold are those driven, workaholic, goal driven, perfectionist, 'never say die' characters. This is because these people ignore the normal cues that make us stop striving - they continue despite symptoms of fatigue and pain in order to achieve. The achievement is at the expense of their health. Furthermore, these personalities are more likely to turn to addictions to mask symptoms in order that they can keep going.”
― Sarah Myhill, Diagnosis and Treatment of Chronic Fatigue Syndrome: it's mitochondria, not hypochondria!

“Everything I thought I understood about disease research, drug development, and the delivery of clinical care has been turned on its head. This isn’t science or medicine as I had come to know them but rather a parade of psychogenic bias, neglect, bad science, flawed public policy, and the political agendas of powerful people and institutions that have sentenced ME patients to the medical equivalent of the most squalid slum in the poorest country on earth. The political decisions taken over the last thirty years have polluted research, perverted clinical care, and shipwrecked ME patients with a life-threatening dose of stigma, disbelief and medically induced harm.”
― Mary Dimmock

“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

“The finding that ME and CFS group had more functional limitations and more serious symptoms than those with MS [multiple sclerosis] provides additional evidence to the seriousness of ME and CFS.”
― Leonard A. Jason

“Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition characterized by severe unexplained fatigue and a mixed profile of symptoms such as sore throat, painful/swollen lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, post-exertional malaise and cognitive difficulties (K. Fukuda et al., 1994).”
― Leonard A. Jason

“the disabling fatigue experienced by individuals with ME/CFS differs from that associated with other illnesses or everyday activity”
― Leonard A. Jason

“Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion.”
― Frank Twisk

“The diagnostic criteria for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) define two distinct clinical entities. Cognitive impairment and post-exertional “malaise” (a long-lasting aggravation of typical symptoms, e.g., muscle weakness and cognitive “brain fog”, after minor exertion) are obligatory for the diagnosis ME, while chronic fatigue is the only mandatory symptom for the diagnosis CFS.”
― Frank Twisk

“ME, a neurological disease[20,21], has been described in the medical literature since 1934 under various names[22], e.g., epidemic neuromyasthenia and atypical poliomyelitis, often on account of outbreaks[23-25]. Characteristic symptoms of ME, classified as a disease of the nervous system by the WHO since 1969[26], are: muscle weakness, neurological dysfunction, especially of cognitive, autonomic and neurosensory functions; variable involvement of the cardiac and other systems; a prolonged relapsing course; but above all general or local muscular fatigue after minimal exertion with prolonged recovery times (post-exertional “malaise”)[20].”
― Frank Twisk

“individuals with ME/CFS experience different types of fatigue than what are reported in the general populations”
― Leonard A. Jason

“For 13 years now I have suffered. I have lost my job that I loved, my financial independence, my social life, my friends, my ability to leave the house when I want to or do the things when I want to instead my body does the dictating now.”
― Tracey Browett

“I have seen three beautiful young girls in their 30's within the last few years pass away due to this illness, who not only fought their battles with this illness but who played an important role in raising awareness of ME.

Yes you can die as a result of having ME if you become at the severe end of it which
25% do.”
― Tracey Browett, Severe ME : Notes for Carers

“I wake up every morning, thinking that this can't really be happening. What parallel universe have I entered?”
― Mary Dimmock, Severe ME : Notes for Carers

“Over the years, I have cared for loved ones with advanced Alzheimer, late stage cardiovascular and renal disease and Stage 4 cancer. But none of those experiences prepared me for being a carer for a Severe or Very Severe ME patient. The breadth, severity and unprediciability of the symptoms and dysfunction from one person ro the next and from one day to the next can be hard to comprehend and mainstream medical education doesn't help.”
― Mary Dimmock, Severe ME : Notes for Carers

“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

“M.E. is a neuromuscular disease with distinctive muscular symptoms, including prolonged muscle weakness after exertion, and neurological signs implicating cerebral dysfunction, including cognitive impairment and sensory symptoms.”
― Frank Twisk

“The tiredness of M.E. or Chronic Fatigue Syndrome is so different to normal tiredness.

We all say "I'm so tired". No you're not because you are still standing.

The tiredness of M.E. is so different because it doesn't get better when you rest.

It is tiredness through your bones. It is such a profound weariness.

It's not due to muscle weakness.

It is not loss of motivation or pleasure such as you get in people who are depressed.

It is just exhaustion to your bones.”
― Sarah Jarvis