Best Myalgic Encephalomyelitis Quotes | Short & Famous Sayings Page 2

“The diagnosis ME requires both M and E problems, whereby M stands for Myalgic i.e. muscle pain and muscle energy production problems and E for Encephalomyelitis, i.e. specific neurological, neuroimmune and neurocognitive problems.”

Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes

Author:Mark Vink

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Graded Exercise Therapy Stopget

Author:Karen Kirke

“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.”

Exercise Treatment Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Nhs Graded Exercise Therapy Cbt Cfs Me Stopget

Author:Charles Shepherd

“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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Mark Vink

Author:Cort Johnson

“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.”

Exercise Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Stopget

Author: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].”

Exercise Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Me Cfs Quotes Graded Exercise Therapy Stopget

Author:Mark Vink

“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.”

Disability Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Stigma Iatrogenic Simon Wessely

Author:Byron Hyde

“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.”

Controversy Authoritarianism Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Derision Authority And Attitude Simon Wessely Hate Campaign

Author:Michael Hanlon

“I have no problem with not understanding the exact mechanism of the symptoms of CFS…I do have a problem with the lack of respect given patients with poorly understood neurological disease.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Book:Faces of CFS

Source: Faces of CFS

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

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs M E Cfs Me

Author:Paul Cheney

“The evidence of inflammation in people with ME/CFS is important because the incremental aerobic exercise recommended by the Wessely School and encapsulated in NICE’s Clinical Guideline 53 is contra-indicated in cases of inflamed and damaged tissue and inevitably results in post-exertional relapse with malaise, which is the cardinal symptom of ME/CFS.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Author:Margaret Williams

“The pathophysiological consequences of ME/CFS are multi-systemic and may include: immune and neuroendocrine abnormalities; brain dysfunction and neurocognitive defects; cardiovascular and autonomic disturbances; abnormalities in energy production including mitochondrial dysfunction, and changes in the expression of certain genes.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Neurological Problems

Author:Anthony Komaroff

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Cognitive Behavioral Therapy Graded Exercise Therapy Invisible Illness Stigma Cbt Illness Beliefs Graded Exercise Iatrogenic Harm

Author:Anthony Komaroff

“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”.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Neurological Disorder Invisible Illness Stigma Simon Wessely Neurological Problems Wessely School

Author:Margaret Williams

“It’s absolutely retrogressive to suggest [ME] CFS is in the heads of patients. I have seen patients commit suicide, or have been otherwise destroyed, because some professor has diagnosed them as having a psychiatric illness.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Misdiagnosis

Author:Peter Behan

“people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)”

Fatigue Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Malaise

Author:Margaret Williams

“(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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Quotes Illness Stigma

Book:Faces of CFS

Source: Faces of CFS

“It [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Misdiagnosis

Author:Daniel L. Peterson

“Individuals are often stigmatized and told their illness isn’t real… People with [ME] CFS face an incredible burden just getting doctors to take their symptoms seriously”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Stigma

Author:Barry E. Hurwitz

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness M E Cfs M E Invisible Illness Stigma

Author:Sonya Chowdhury

“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!”

Fatigue Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Author:Jane Cuozzo

“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 Encephalomyelitis Me Cfs Invisible Illness Stigma Medically Unexplained Symptoms Somatic Symptoms Somatization Somatoform Misfiagnosis

Author:Per Dalén

“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV.”

Hiv Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness Invisible Illness Stigma

Author:Nancy G. Klimas

“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.”

Exercise Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs M E Cfs Graded Exercise Therapy

Author:Paul Cheney

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Welfare Benefits Chronic Illness Stigma Disability Benefits Dwp Illness Benefts Department Of Work And Pensions Wesseley School

Author:Malcolm hopper

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Illness Beliefs Wesseley School Aberrant Belief Illness Behaviors Stick Role

Author:Malcolm hopper

“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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Cfs Me Simon Wessely Wessely School

Author: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.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Malaise Chronic Fatigue Cfs Me Headed Exercise Therapy

Author: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.”

Exercise Depression Mental Health Mental Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Mental Disorder Chronic Fatigue Cfs Me

Author:Bruce M. Carruthers

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Invisible Illness M E

Author: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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs M E Cfs M E

Author:Leonard A. Jason

“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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Graded Exercise Therapy

Author:Brynmor John

“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.”

Exercise Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Graded Exercise Therapy

Author:Malcolm hopper

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and... psychological factors played no role.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Author:William C. Reeves

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Neurological Disorder

Author:Malcolm Hooper

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Graded Exercise Therapy Graded Exercise

Author:Garry C. Scroop

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Welfare Benefits Chronic Illness Stigma Disability Benefits Dwp Illness Benefts Department Of Work And Pensions

Author:Malcolm hopper

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Welfare Benefits Chronic Illness Stigma Disability Benefits Dwp Illness Benefts Department Of Work And Pensions

Author:Malcolm hopper

“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 Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Fatigue Cfs Me

Author: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.”

Cognitive Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Fatigue Cfs Me Brain Fog Concentration Problems

Author: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.”

Depression Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Misdiagnosis Chronic Fatigue Cfs Me

Author:Bruce M. Carruthers

“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.”

Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs M E Cfs Chronic Fatigue

Author: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.”

Exercise Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs M E Cfs Graded Exercise Therapy Pace Trial

Author:Sten Helmfrid

“The disabling weakness and exhaustion a person with ME/CFS experiences is so profound that "fatigue" is ...probably an insult.”

Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs

Author:Jane Cuozzo

“Now, at last, medicine has decided to recognize our problem. This is a tremendous beginning, but by defining Chronic Fatigue Syndrome to the public with such a benign name, a name that gets confused with simple (often stress-related) fatigue, you have placed yet another burden on us.”

Fatigue Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Chronic Fatigue

Author:Jane Cuozzo

“No matter how hopeless you feel, strive to find the one thing that makes you feel alive and pull yourself to the light at the end of the tunnel. There is hope. Trust me.”

Life Hope Chronic Fatigue Syndrome Myalgic Encephalomyelitis Fibromyalgia

Author:Tammy-Louise Wilkins

“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].”

Fatigue Myalgic Encephalomyelitis Malaise M E Neurological Disorder Neurological

Author:Frank Twisk

“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.”

Science Research Medical Fatigue Me Chronic Illness Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Stanford

Book:The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son

Source: The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness that Stole His Son

“Mark Vink is a not a typical ME/CFS patient. He is severely ill. It takes him twelve hours to recover from a walk from his bed to the bathroom. While he’s not typical he may not be that uncommon, though. Some estimates suggest that about 25% of ME/CFS patients are home bound or bedridden. Few ever make it into research studies.”

Chronic Illness Chronic Fatigue Syndrome Myalgic Encephalomyelitis Me Cfs Quotes Bedridden Severe Me Housebound

Author:Cort Johnson

“With a strange logic, [Rod Liddle] asserts that because ME patients deny that they have a psychiatric disorder, this proves they have a psychiatric disorder. Meanwhile, people are quietly dying of ME. ME sufferer Emily Collingridge died, aged 30; Victoria Webster died at just 18. People don’t die from ‘exercise phobia’. ME is not ‘lethargy’ and ‘aches and pains’, as Liddle claims. Severe ME is lying in a darkened room, alone, in agonising pain, tube-fed, catheterised, too weak to move or speak.”

Stigma Illogical Cfs Chronic Fatigue Syndrome Myalgic Encephalomyelitis Medical Ethics Graded Exercise Therapy Chronic Illness Stigma False Beliefs Faulty Thinking Exercise Phobia Medicall Unexplained

Author:Tanya Marlow