ME/CFS

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This disease has been reported in epidemic and sporadic form since 1934. It is known by a variety of synonyms. There are different diagnostic criteria in different parts of the world.


ME/CFS around the World

The name

The following names have been used to describe this disease. However, they are not all equal and do not necessarily refer to the same patient population.

  • Myalgic Encephalomyelitis (ME)
  • Myalgic Encephalopathy (ME)
  • Chronic Fatigue Syndrome (CFS)
  • Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
  • Chronic Fatigue Syndrome/Myalgic encephalomyelitis (or encephalopathy) (CFS/ME)
  • Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
  • Post Viral Fatigue Syndrome (PVFS)
  • Myalgic Encephalomyelitis/Post Viral Fatigue Syndrome (ME/PVFS)
  • Epidemic neuromyasthenia
  • Akureyri disease
  • Iceland disease
  • Royal Free Disease
  • Tapanui Flu
  • Low Natural Killer Syndrome (LNKS)
  • Chronic Epstein Barr Virus Syndrome

Names currently in use

  • Myalgic encephalomyelitis (ME)
  • Myalgic Encephalopathy (ME)
  • Chronic Fatigue Syndrome (CFS)
  • Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
  • Chronic Fatigue Syndrome/Myalgic encephalomyelitis (or encephalopathy) (CFS/ME)
  • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
  • Post Viral Fatigue Syndrome (PVFS)
  • Myalgic Encephalomyelitis/Post Viral Fatigue Syndrome (ME/PVFS)


History of the name

In the early 20th century there were several outbreaks of an infectious nature. The first recorded was the Los Angeles County Hospital outbreak in 1934, that resembled poliomyelitis. Since this event there have been over 60 recorded outbreaks worldwide.

[1] Names such as “Iceland Disease” (White and Burtch 1954), “Akureyri disease” (Sigurdsson and Gudmundsson 1956), and “epidemic neuromyrasthenia” (Shelokov et al. 1957) amongst others have been given to this syndrome. The most famous of these outbreaks was in 1955 at the Royal Free Hospital London. 292 members of staff were affected, and forced the hospital's closure between 25th July and 5th October.


It was this case, along with several others, which went on to coin the term 'benign myalgic encephalomyelitis' (ME), in the article 'A new clinical entity?' (1956 Lancet). The name was suggested because it did not prejudice the arguments for or against a single or a related group of causal agents, and that it described some of the striking features of the syndrome characterised by (1) symptoms and signs of damage to the brain and spinal cord, in a greater or lesser degree, (2) protracted muscle pain with paresis and cramp, (3) emotional disturbances in convalescence, (4) normal CSF, (5) involvement in some variants of the reticuloendothelial system, (6) a protracted course with relapses in severe cases, and (7) a relatively benign outcome.


" It was hoped that the term “benign myalgic encephalomyelitis” would emphasize the absent mortality, the severe muscular pains, the evidence of parenchymal damage to the nervous system, and the presumed inflammatory nature of the disorder. This term has been adopted by Galpine and Brady and Deisher in subsequent articles. It has also been criticized by Sigurdsson and the staff of the Royal Free Hospital. Sigurdsson objects that the disease is not always benign, not invariably myalgic, and possibly never encephalomyelitis. Benignity is relative; it seems that “benign” is justified by the fact that there is no other recorded infective disease of the central nervous system without mortality. As various authors have stressed, the pain in this disease, although not invariably present, may be devastating, and is perhaps the feature which impresses itself most forcefully on the observer. As far as the final term is concerned, the clinical impression that the lesion is central rather than peripheral is supported by the electromyogram. In our present state of ignorance “encephalomyelitis” seems preferable to “encephalopathy” because it conveys the suggestion that the disease is infective in origin, which is almost certainly the case.


In the Royal Free Hospital report it is pointed out that the name fails to describe the involvement of the lymph nodes and liver. As the author has indicated elsewhere, a fully descriptive name such as “benign ameningitic myalgic lymphoreticular encephalomyelopathy” if impracticable. Shelokov et al. and Poskanzer et al. have coined the phrase “epidemic neuromyasthenia”. The first term is misleading because it suggests that the disorder is confined to epidemics, the second (translated nerve-muscle-weakness) is either meaningless or, if it means anything, suggests a disorder of the muscle end-plate, which is contrary to the electromyographic evidence. The verbal similarity with “neurasthenia” (i.e., psychoneurosis) is particularly unfortunate."
(1959 Acheson, 'The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia' in the American Journal of Medicine. [2])


In 1965 the World Health Organisation (WHO) approved the disease, and it was entered into ICD-8 in 1969, under the name 'Benign myalgic encephalomyelitis' (ME), as a neurological disorder, Volume I: code 323: page 158 and in Volume II (the Code Index) on page 173.


In 1970 a student at Oxford University, Colin McEvedy, used the London Royal Free Hospital epidemics as a basis of his PhD thesis. The thesis was then published by McEvedy and his tutor Dr. Alfred William Beard, in the BMJ as a scientific paper. They concluded that the epidemic of 1955 and a further 14 outbreaks were the result of epidemic hysteria. Reason's cited were the high attack rate in females compared with males; the intensity of the malaise compared with the slight pyrexia; the presence of subjective features similar to those seen in a previous epidemic of hysterical overbreathing; the glove-and-stocking distribution of the anaesthesia; and the normal findings in special investigations. The explanation of hysteria had been entertained by those who investigated the Royal Free outbreak, but was dismissed as improbable on a number of grounds, including similarities in the symptomatology and course of the illness across many types of community.


"McEvedy and Beard’s conclusions (of mass hysteria) ignore the objective findings of the staff of the hospital of fever, lymphadenopathy, cranial nerve palsies and abnormal signs in the limbs...Objective evidence of brain stem and spinal cord involvement was observed” [3] Nigel D Compston. (1978 Postgraduate Medical Journal).


"It is quite shameful that the British Medical Journal published such a paper, in which no patient was examined, no history was taken, not even was there any consultation with any of the senior or junior physicians who had been responsible for examining and treating these injured patients." [4] Dr Bryron Hyde (2006 London Conference)


The disease was once again brought to the attention of the public in 1984, starting with a outbreak in Lake Tahoe, USA. The Centers for Disease Control and Prevention (CDC) were brought in to investigate. As more outbreaks occurred across the USA, the media, under the false impression that only young professional were suffering from the unknown illness, began to use the term 'Yuppie flu'. Initially investigators thought the disease was linked to the Epstein Barr virus, and for a time was referred to it as 'Epstein Barr Virus Syndrome'. This was later disproven.


In 1988 the CDC published the first definition for 'Chronic Fatigue Syndrome' (Holmes). At the time it was criticised for ignoring or failing to take into account the earlier work of experienced observers of the disease such as Ramsay, Acheson and others, and in so doing omitted or under-emphasised many of its cardinal symptoms. Instead it gave undue prominence to the symptom ‘chronic fatigue’. The CDC to this day state that:


"...ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." [5]


In 1992 the WHO listed CFS for the first time in ICD-10, to G93.3 Disorders of the Nervous System, along with benign myalgic encephalomyelitis and Post-Viral Fatigue Syndrome.


Dr Enlander video providing brief summary on the history of ME

Fatigue & Chronic Fatigue

Fatigue and Chronic fatigue are a common symptom in many illnesses, but ME/CFS is a multi-systemic disease.


Children & ME/CFS

Very little research has been undertaken into children with ME/CFS. Please see the wiki page on Children & ME/CFS.


Classification

World Health Organization

ME is listed by the WHO as a neurological disorder, at G93.3.


G00-G99

(G00-G99) Diseases of the nervous system (Chapter VI)

(G90-G99) Other disorders of the nervous system
G93 Other disorders of brain
G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis



'CFS' has no listing in the tabular list of ICD-10. 'CFS' is only listed in the Alphabetical index, as follows:


Syndrome

- fatigue F48.0

- - chronic G93.3

- - postviral G93.3


Diagnosis

Australia

In 2004, South Australian State Government introduced a clinical guidelines booklet based on the Canadian Consensus Document for ME/CFS. It varies slightly and is more abbreviated than the Overview of the Consensus Document, nevertheless it is yet another resource to address the shortcomings of the U.S. CDC CFS case definition (Fukuda, 1994). In the Australian document, once again the emphasis is correctly removed from 'fatigue' and placed on post-exertional malaise with prolonged recovery time, neurological/cognitive manifestations, sleep disorder, pain and autonomic manifestations. Like the Canadian Consensus Overview, it targets the busy clinician and offers concise symptom and disability checklists.

"The hallmark of ME/CFS is that increased physical or mental exertion results in worsening symptoms, often with a delayed impact (i.e. it is felt later the same day or next day), and lasting for more than 24 hours. Recovery from such relapses may take days, weeks or even months."

[6]


Canada

United Kingdom

Currently the NICE Guidelines (2007) are used to diagnose patients, in the NHS in England and Wales. These guideline are for Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy).


The following criteria are required:

  • That a patient have fatigue with all of the following features: new or had a specific onset (that is, it is not life long), persistent and/or recurrent, unexplained by other conditions, has resulted in a substantial reduction in activity level characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)
  • and one or more of the following symptoms: difficulty with sleeping (such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle), muscle and/or joint pain that is multi-site and without evidence of inflammation, headaches, painful lymph nodes without pathological enlargement, sore throat, cognitive dysfunction (such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing), physical or mental exertion makes symptoms worse, general malaise or ‘flu-like’ symptoms, dizziness and/or nausea, palpitations in the absence of identified cardiac pathology.


The diagnosis should be reconsidered if the person has none of the following symptoms: post-exertional fatigue or malaise, cognitive difficulties, sleep disturbance, chronic pain.

United States of America

Switzerland

Testing

Currently there is no medical test that can be used to diagnose ME/CFS. However, there are a number of tests which some doctors and patients may use to assist in diagnosis and treatment.

Please see the Medical Tests page.


Signs and symptoms

Onset

Symptoms

Please see the Definitions page for specific requirements and additional symptoms. Below are further details on particular characteristics of ME.


Functioning, disability and health

Pathophysiology

Treatment

Please see the Treatments page for more details

Placebo

CFS patients have a low placebo response. Psychological-psychiatric interventions are shown to have an even lower placebo response, perhaps due to their inability to treat a physical disease or patient expectations. [7]


Prognosis

Mortality

Two studies were published in 2006 that directly addressed mortality in CFS. A 14 year longitudinal study of persons with CFS reported that all-cause mortality or suicide rates of individuals were not significantly different from standardized mortality rates (SMRs). [8] A smaller retrospective study of deaths in individuals with CFS reported a greater likelihood of death from heart failure, suicide, and cancer. The ages of death for these three conditions were significantly younger than in the general population respectively. [9]


Epidemiology

XMRV Research

Click here to go the XMRV & MRV's page


History

Research Funding

United Kingdom

In November 2006, a parliamentary inquiry called the Group on Scientific Research into ME, Erythos.com was informed by a government minister that few good biomedical research proposals have been submitted to the Medical Research Council (MRC) in contrast to those for psychosocial research. They were also told by other scientists of proposals that have been rejected, with claims of bias against support for this type of research. The MRC confirmed to the Group that that from April 2003 to November 2006, it has turned down 10 biomedical applications relating to CFS/ME, and funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain. In 2008, the MRC set up an expert group to consider how the MRC might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas. It currently lists CFS/ME with a highlight notice, inviting researchers to develop high quality research proposals for funding. MRC In February 2010, the All-Party Parliamentary Group on ME (APPG on ME) produced a legacy paper, which welcomed the recent MRC initiative, but felt there has been far too much emphasis in the past on psychological research with insufficient attention to biomedical research and it is vital that further biomedical research be undertaken to help discover a cause and more effective forms of management for this disease. APPGME

United States

Society and culture

Economic Impact

A USA study published in April 2008, estimated that the direct and indirect cost of ME/CFS to society was $18,677,912,000 when using a community sample and $23,972,300,000 for a tertiary sample, and concluded that ME/CFS imposes substantial economic costs. This was based on a ME/CFS prevalence of 0.42 and indirect costs estimates from Reynolds et al. (2004) [10]

Social Issues

Support groups

Doctor/patient relations

Blood donation

Since the publication of the 'Lombardi et al.' study in Science magazine in October 2009, which found an association between the retrovirus XMRV and ME/CFS patients, several countries have chosen to discourage and ban blood donations from patients. Organizations adopting these or similar measures included the Canadian Blood Services, the New Zealand Blood Service, the Australian Red Cross Blood Service, the American Association of Blood Banks [11], and Malta's National Blood Transfusion Services. [12]


In the UK patients with ME have been permanently excluded from donating blood since at least 1989 (Guidelines for the Blood Transfusion Service in the UK, 1989: 5.4; 5.42; 5.43; 5.44; 5.410). This was subsequently upheld by the Parliamentary Under Secretary of State The Lord Warner, who confirmed in writing on 11th February 2004 in a letter to the Countess of Mar that people with ME/CFS are not permitted to be blood donors. Lord Warner stated that: "We have checked with the National Blood Service and they have provided the following information. The NBS guidelines on donor selection on ME refer to those on Post Viral Fatigue Syndrome. The Guidance is: defer from blood donation until recovery. The underlying logic is that this condition is possibly viral and therefore the NBS cannot accept the risk of possible transmission by blood. Since the condition is very variable and sometimes prolonged, it could become a lifetime ban in any particular case. I have copied this letter to the House (of Lords) library". [13]


On 10th March 2010, during a Parliamentary session, the United Kingdom Secretary of State for Health again stated that ME/CFS patients cannot give blood until they have recovered. [14]


See Also

Links

Articles

Pacing

Papers

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