CFS: names, symtomps, diagnosis criteria, etc...

There are a number of different terms which have been identified at various times with this disorder.

Myalgic encephalomyelitis (ME, "inflammation of the brain and spinal cord with muscle pain") as a disease entity has been recognized and described in the medical literature since 1938, with the seminal paper being that by Wallis in 1957; Sir Donald Acheson's (a former Chief Medical Officer) major review of ME was published in 1959; in 1962 the distinguished neurologist Lord Brain included ME in his textbook of neurology, and in 1978 the Royal Society of Medicine accepted ME as a distinct clinical entity. In 1988 both the UK Department of Health and Social Services and the British Medical Association officially recognized it as a legitimate and potentially distressing disorder. Opponents to the term ME maintain there is no inflammation, although there are cases of CFS that present inflammation (see Sophia Mirza). United Kingdom and Canadian researchers and patients generally use this term in preference to CFS.
Chronic fatigue syndrome (CFS); this name was introduced in 1988 by a group of United States researchers based at the Centers for Disease Control and Prevention, and is used increasingly over other designations, particularly in the United States.
Chronic fatigue immune dysfunction syndrome (CFIDS); many people, many patients and advocacy groups in the USA use the term CFIDS (pronounced [See-Fids]), originally an acronym for the above or "Chronic Fatigue & Immune Dysregulation Syndrome". This term was introduced by patients current with the biomedical research in an attempt to reduce the psychiatric stigma attached to "chronic fatigue", as well as the public perception of CFS as a psychiatric syndrome.
Post-viral [fatigue] syndrome (PVS or PVFS); this is a related disorder. According to original ME researcher Dr. Melvin Ramsay, "The crucial differentiation between ME and other forms of post-viral fatigue syndrome lies in the striking variability of the symptoms not only in the course of a day but often within the hour. This variability of the intensity of the symptoms is not found in post-viral fatigue states" (Ramsay 1989). However, other researchers and advocates argue that other post-viral syndromes (such as post-polio syndrome) do show similar variability, and point to the striking similarity between post-viral fatigue syndrome and CFS symptoms, noting that many CFS cases are triggered by a viral illness.
Chronic Epstein-Barr virus (CEBV) or Chronic Mononucleosis; the term CEBV was introduced by virologists Dr. Stephen Straus and Dr. Jim Jones in the United States. The Epstein-Barr virus, a neurotropic virus that more commonly causes infectious mononucleosis, was thought by Straus and Jones to be the cause of CFS. Subsequent discovery of the closely related human herpesvirus 6 shifted the direction of biomedical studies, although a vastly expanded and substantial body of published research continues to show active viral infection or reinfection of CFS patients by these two viruses. These viruses are also found in healthy controls, lying dormant.
Low Natural Killer cell disease; this name is used widely in Japan. It reflects research showing a reduction in the number of natural killer cells in many CFS patients.
Yuppie Flu; this was a factually inaccurate nickname for CFS, first published in a November 1990 Newsweek article. It reflects the belief that CFS mainly affects the affluent ("yuppies"), and implies that it is a form of malingering or burnout. CFS, however, affects people of all races, genders, and social standings, and this nickname is inaccurate and considered offensive by patients. It is likely that this article contributed to the damaging public (and even medical) perception of CFS as a psychiatric or even psychosomatic condition.
Uncommonly used terms include Akureyri Disease, Iceland disease (in Iceland), Royal Free disease (after the location of an outbreak), raphe nucleus encephalopathy, and Tapanui flu (after the New Zealand town Tapanui where the first doctor in the country to investigate the disease, Dr Peter Snow, lived).

Symptoms
According to the 1994 Fukuda definition there are eight main categories of symptoms in CFS:

Fatigue: People with CFS experience profound, overwhelming exhaustion, both mental and physical, which is worsened by exertion, and is not relieved (or not completely relieved) by rest. To receive a diagnosis of CFS, this fatigue state must last for six months.
Pain: Pain in CFS may include muscle pain, joint pain (without joint swelling or redness, and may be transitory), headaches (particularly of a new type, severity, or duration), lymph node pain, sore throats, and abdominal pain (often as a symptom of irritable bowel syndrome). Patients also report; bone, eye and testicular pain, neuralgia and painful skin sensitivity. Chest pain has been attributed variously to microvascular disease or cardiomyopathy by researchers, and many patients also report painful tachycardia.
Cognitive problems: people with CFS may experience forgetfulness, confusion, difficulty thinking, concentration difficulties, and "mental fatigue" or "brain fog". Additional signs may be experienced; in the 2003 Canadian Definition these include aphasia, agnosia, and loss of cognitive body map.
Hypersensitivity: people with CFS are often sensitive to light, sound, and some chemicals and foods. Many CFS patients report an increase in allergic-type sensitivity to foods, scents, and chemicals, and many also report a sensitivity to medications, which can complicate treatment. Patients with pre-existing allergies, asthma, and similar conditions often report a worsening of symptoms. Sensory overload is commonly reported by patients, leading to increased fatigue and even migraine or seizures.
Poor temperature control: people with CFS often report either feeling too hot or too cold, possibly due to involvement of the hypothalamus, which regulates body temperature. Many CFS patients frequently run a low fever, or report fever-like symptoms (sweating, feeling too hot or cold, etc.) without measurable fever temperature.
Sleep problems: "Unrefreshing sleep" and rest is a hallmark of CFS, and insomnia is also common. Maintaining a sleep schedule is extremely difficult for many patients. Vivid, "feverish" dreams are a symptom in many people with CFS, exacerbating disturbed sleep patterns. Patients report that exercise, unlike in healthy persons, worsens the insomnia and unrefreshing sleep symptoms alike.
Psychological/Psychiatric symptoms: emotional lability, anxiety, depression, irritability, and sometimes a curious emotional "flattening" (most likely due to exhaustion), may manifest in CFS patients. Many of these symptoms can be directly caused by the CFS mechanism or, in some cases, may be secondary symptoms created by the syndrome, as many chronic pain or illness patients also show similar psychiatric issues. CFS patients with pre-existing psychiatric symptoms may report that these worsen with the onset of CFS. Treatment for psychiatric symptoms alone does not relieve the physical symptoms of CFS, indicating that the disease is not psychological in nature.
Disturbances in the autonomic nervous system and hormones:
People with CFS often have abnormalities in the autonomic nervous system such as low blood volume, orthostatic intolerance, dizziness and light-headedness, especially when standing up quickly.
Hormonal abnormalities may include abnormal vasopressin metabolism and a blunted ACTH response, leading to hypothyroidism and/or low cortisol and reduced ability to respond to physiological and emotional stress. Patients sometimes show abnormally low levels of testosterone, growth hormone and other important hormones.

Course

Onset
Some cases of CFS start gradually, but the majority start suddenly, often triggered by a 'flu-like viral or similar illness. People with CFS may improve or recover after several months, or many years, or not at all. It is not known whether any CFS sufferer has truly recovered to pre-illness levels, or whether their symptoms have merely subsided enough for them to live a more normal life. Some sufferers have a remission for months or years only to later relapse, often more severely.

Sudden onset cases
Many people with CFS report a sudden, drastic start to their illness. Some people can remember a specific day or even hour when they first became ill.

Often CFS starts with, or is triggered by, another illness. Many people report getting a case of the 'flu', exposure to an allergen (a cough or sniffle caused by paint, a new pet, or construction dust), or a severe infection such as bronchitis, from which they seem never to fully recover and which slowly evolves into CFS. Some patients claim that vaccination, especially with recombinant vaccine against hepatitis B, is another cause of acute onset CFS. Other patients begin with Lyme disease, which despite a standard course of treatment, may 'evolve' clinically from the symptoms of acute Lyme to those of CFS. Because CFS symptoms bear a striking similarity to those of late-stage Lyme disease (Donta, 2002), this has become an area of great controversy. Some clinicians assume the Lyme infection has been eradicated after a course of treatment and diagnose CFS by the Fukuda definition, while others treat such cases as seronegative, chronic Lyme infection (see The Lyme controversy). Other, noninfectious triggers may include car accidents, moving house, and stressful life situations. Some patients say they felt unusual or uneasy for a short period (days or weeks) before the onset.

Gradual onset
Other cases have a very slow, gradual onset, sometimes spread over years. People with gradual onsets may not realize there is anything wrong for quite some time. Patients may believe they have a minor illness, or ascribe their weakened condition to stress, and assume they will improve with time. It is only when the patient realized that their condition is truly debilitating, or the stress is removed and the symptoms remain, that the patient will begin to seek treatment.

There is no standard course for CFS. For a patient to be officially diagnosed with chronic fatigue syndrome, the symptoms must have persisted for at least six months. However, the Fukuda paper also contains a definition of "chronic fatigue" which is reserved for those who do not meet the full criteria for CFS. Since the 50% rule of Holmes et al was dropped, it is possible that there are people with CFS whose level of disability is so low that they never seek treatment, or receive an accurate diagnosis, though this is not permitted by the Canadian definition.

Activity levels
Activity levels vary widely among CFS patients. While some are able to lead a relatively normal life, others are totally bed-bound and unable to care for themselves. Almost all patients find they must drastically reduce their activity from pre-illness levels, regardless of their previous level of athleticism, and must severely modify or give up physical hobbies and exercise. Many patients find themselves unable to work full-time, or at all. A considerable number of CFS cases in many countries are on disability benefits or private insurance, or have made claims and been denied.

One notable CFS sufferer is soccer legend Michelle Akers, who reported struggling with the illness for many of the later years of her career. However, more severe sufferers felt that an active professional athlete "poster child" like Akers helped to trivialize the syndrome in the eyes of the public, and made it much more difficult for highly incapacitated patients to be taken seriously. It is worth noting that the condition can strike persons of all activity levels, and that a few patients may have had high levels of physical health and activity before onset.

Post-exertion symptom exacerbation
One of the most common and recognizable aspects of CFS is what is called "post-exertional malaise". When people with CFS exert themselves beyond their limits (and their limits may change daily), their symptoms worsen. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward, and with greater recovery time.

A cyclical pattern often occurs when patients work harder because they "feel better" or are having a "good day", leading them to think they can exert themselves more than usual. However, the excess exertion leads to worse symptoms on the following day. Thus it is difficult for patients to maintain an even level of activity, or to tell if they are improving. In sufferers without a diagnosis of CFS, or a proper understanding of how CFS affects exertion, this can lead to a "downward spiral", where a sufferer will try to work harder to make up for the previous day's lack instead of resting. This exhausts them further, and often can trigger a relapse or worsening of their condition. If the original exertion, which can be physical or mental in nature, was particularly severe, the sufferer may deteriorate to a point where they are unable to care for themselves. Many cases then result in hospitalisation because the condition has deteriorated a great deal. However, it must be noted that patients may deteriorate due to co-morbid illness, or for unknown reasons, and patient exertion cannot be blamed for a patient's deterioration; the condition is not so easily managed.

Duration
People with CFS may improve after a few months, or after many years, or never at all. They may reach a plateau at some constant level of health, or may progressively decline. Often, the symptoms change over time, or cycle irregularly. Relapses are common, especially after stressful life events or additional illness. Exertion can cause not merely a relapse, but a worsening of overall health. Un-diagnosed cases of CFS often worsen as the sufferer attempts to return to a 'normal' level of activity, only to make their condition worse through exertion.

Diagnosis
At this time, there is no accepted conclusive test or series of tests of chronic fatigue syndrome. CFS is therefore largely an exclusionary diagnosis. If a doctor suspects a patient may have CFS they should begin the diagnostic process by eliminating other potential causes of the patient's symptoms. "Chronic fatigue" and similar symptoms can be caused by a wide variety of conditions which should be investigated, although treatment of the patient's symptoms can begin before a complete diagnosis is made. In a patient displaying CFS symptoms including new migraines, for example, it is safe and reasonable to treat the migraines while attempting to rule out other possible causes of the patient's fatigue.

CDC 1994 criteria (aka "Fukuda")
According to the 1994 CDC case definition, a diagnosis of CFS requires that the following conditions be met (otherwise, the diagnosis is idiopathic chronic fatigue).

Primary symptom: incapacitating fatigue
Incapacitating fatigue that is:

of new or definite onset (not since birth)
unexplained by other medical cause,
lasts for at least six months (from onset, not necessarily from when the patient becomes aware that the fatigue is an ongoing symptom)
and is not improved by rest.

Additional symptoms
The fatigue must be accompanied by a minimum of 4 of the following eight symptoms:

1) Impairment of short-term memory and concentration
2) Sore throat
3) Tender lymph nodes
4) Muscle pain
5) Multi-joint pain
6) Headaches of a new type, pattern, or severity
7) Unrefreshing sleep
8) Post-exertional malaise (fatigue lasting more than 24 hours after exertion)

Other systems
Some scoring systems, while being considered imperfect, have been proposed to quantify CFS symptoms for research purposes. These include:

Holmes et al (1988) scoring system. Also sometimes called "CDC 1988", to distinguish from the newer CDC system.
Oxford criteria (1991) (also see here and here)
Carruthers et al (2003) Canadian Case definition for ME/CFS
Other ability/disability scales designed for similar symptoms to those of CFS have also been used.

Controversies
Historically, many doctors have been unfamiliar with CFS, and some have refused to diagnose it. This situation is changing somewhat, with more doctors willing to diagnose it. In the UK, the Chief Medical Officer's report stated that all doctors should consider CFS as a serious chronic illness — though it is not stated whether this is a serious physical illness — and treat patients accordingly. Similar progress has been made in the United States.

There remains considerable skepticism amongst some medical professionals about the existence of CFS as a 'real' — i.e. medical as opposed to behavioral — condition, possibly due to the extreme uncertainty of its etiology, and the lack of testing for biomedical signs. As is common historically with new or unexplained conditions, many people are inclined to believe that a condition with few to no biomedical markers may be, or even must be, psychological in origin. This has led to frustration in many patients, who feel strongly that their disability is not psychological, but biological, in cause and effect. Some more vocal patients' groups maintain that research into CFS (ME) in the UK has been mostly hijacked by the psychologists/psychiatric lobby, who they claim hold significant power within the medical fraternity, with a resultant "abuse of patients' rights". The UK and the Netherlands have particularly seen disagreements between biomedical researchers and their adherents, and psychiatrists (particularly proponents of cognitive behavioral therapy, or CBT) and supporters of the theory that CFS is psychological in origin, and can be "cured" entirely by therapy and exercise.

Patients whose illnesses are consistent with the older and Canadian definitions tend most to resent the elevation of what they see as a trivialising, nonspecific sensation of "fatigue" to a principle descriptor. It is thus often important to be able to differentiate between the illness experience of needful patients and an epistemic construct that may or may not select the same target, until a better definition and diagnostic testing is widely accepted.

Notable sufferers
Some notable persons who are believed to have suffered from CFS are:

Michelle Akers, soccer player
Brian Aldiss, author
Susan Blackmore, parapsychologist, author
Howard Bloom, evolutionary psychologist, author
Cher, pop singer, actress
Neil Codling, formerly of Suede
Blake Edwards, writer and director of such movies as Breakfast at Tiffany's, 10, and The Pink Panther
John Fahey, folk guitarist
Flea, musician
Clare Francis, international yachtswoman and author
Susan Harris, television writer and producer, who incorporated her experiences into the fifth season of The Golden Girls.
Laura Hillenbrand, author of the book Seabiscuit: An American Legend, the basis for the film Seabiscuit
Kelly Holmes, athlete
Blair Hornstine, New Jersey student who sued her school district when it wanted her to share valedictorian honors with a classmate
Andy Hunt, former British soccer player
Keith Jarrett, jazz pianist
Katharine, Duchess of Kent
Henry Percy, 11th Duke of Northumberland
Alastair Lynch, Australian footballer
Stuart Murdoch, of the band Belle & Sebastian
Barry Sheen, motorcyclist
Martin Speight, artist and former cricket player, Sussex CCC and Durham CCC.
Ali Smith,writer
Frank Iero, musician, My Chemical Romance.
Anna Hemmings, Britain’s leading female marathon canoeist.
Andrew Oldcorn, golfer.

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