.

The Committee for Justice

and Recognition of Myalgic Encephalomyelitis

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Current Topics Page

This page will host special commentary and evaluation of

current issues critical to the patient community.

THE COMMITTEE feels there has been a particular effort to confuse the public about Myalgic Encephalomyelitis. Most of this effort has been rooted in the promotion of the term Chronic Fatigue Syndrome to describe this disease, which has been spreading in epidemic fashion worldwide during the last twenty years. Of particular note is the outright effort undertaken since 1988 by the American CDC to eliminate the name and definition of M.E. and replace it with CFS.

These statements have been selected for our Current Topics pages to help everyone gain a better understanding of Myalgic Encephalomyelitis and thereby better understand the truth about ME and the problems patients and doctors face to advance the public investigation of our disease. We encourage patients to learn about ME, its history and the epidemics and the modern research. Do not be confused by the deceitful propaganda about a “new disease”.

ME and CFS, The Definitions

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No CFS definition defines a

neurological disease.

All definitions which wear the 'f' word (ie. fatigue) in their name are not ME nor neurological. They are definitions of fatigue conditions. And when these definitions were written it was not neurological ME which they were attempting to define.

Ramsay's criteria

(1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored;

(2) variability and fluctuation of both symptoms and physical findings in the course of a day; and

(3) an alarming tendency to become chronic (Ramsay 1988).

Myalgic Encephalomyelitis is defined as a neurological condition at ICD G.93.3. Myalgic Encephalopathy is not recognised in any ICD as a condition.

Myalgic Encephalomyelitis or Myaglic Encephalopathy? Whats in a name?

Myalgic Encephalopathy is not the same as Myalgic Encephalomyelitis. None of the contemporaries of Ramsay, such as Dowsett and Richardson, who have been asked to comment on the appropriateness of a change from ME'itis to ME'opathy have found ME'opathy an acceptable explanation. Myalgia means muscle pain. Encephalo - means brain, myelitis has two meaningss, some say it refers to inflammation of the spinal chord, others to inflammation of the myelin, the covering of the brain. Both are physical descriptions. Opathy, on the other hand means pathology - which can mean 'the science or origin, nature, and courses of diseases', but another meaning is 'any abnormal state: social pathology' (Delbridge 1998). Hence encephalopathy can mean 'brain abnormal state' and this meaning would therefore endorse treatments such as CBT and GET - which do not work in those with neurological ME (which meets the Ramsay criteria). This change of name to 'opathy' can therefore be seen to endorse psychological therapies as treatment.

Muscle pain brain myelin inflammation is not the same as muscle pain brain abnormal state. And the neurological damage which is evident in ME can be explained by myelin inflammation but it cannot be explained by 'brain abnormal state'. Evidence for brain damage has been found in the research of persons such as Casse et al. (2001), Poser (1992) and others. And there is often confusion with MS by persons in the medical profession - where there is myelin damage.

Chronic Fatigue Syndrome Definitions.

Holmes et al. (CDC) (1988).

When Holmes et al. 1988 was written - the condition which they were trying to define was Chronic Epstein Barr Virus. The principal symptom was 'fatigue'. It is interesting to note that those who were familiar with ME on the committee refused to sign off on this definition - as they pointed out that it was not a definition of ME. No mention of neurological problems.

Major criteria:

1. New onset of persistent or relapsing, debilitating fatigue or easy fatigability in a person who has no previous history of similar symptoms, that does not resolve with bedrest, and that is severe enough to reduce or impair average daily activity below 50% of the patient's premorbid activity level for a period of at least 6 months.

Minor criteria: 11 are listed or which the patient has to demonstrate 6 and 2 out of three physical criteria. Criteria 1 is also included in the physical criteria - which relates to mild fever. A diagnosis of CFS is possible without having 5. muscle discomfort or myalgia, 6. Prolonged (24 hours or greater) generalised fatigue after levels of exercise that would have been easily tolerated in the patient's premorbid state 7. Generalised headaches... 8. Migratory arthalgia ... 9. Neuropsychologic complaints, etc. (Hyde et al. 1992).

Ramsay says: (1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored

This is hence not a definition of ME.

Australian Definitions.

Same year as Holmes et al the first Australian definition (Lloyd, Wakefield, Boughton and Dwyer 1988) was written. It was a definition of Post-Viral Fatigue Syndrome - describing prolonged fatigue after a viral illness. The principal author, Lloyd is an immunologist, as is Dwyer. It is an immunological definition of fatigue (ignoring neurological signs). By definition the condition will resolve in two years.

Another Australian definition appeared in 1990 (Lloyd, Hickie (psychiatrist), Boughton, Spencer, Wakefield). The definition of Post-viral fatigue was given a tilt in the psychiatric direction of chronic fatigue. These criteria required the following for a diagnosis of CFS: 1. Chronic persisting or relapsing fatigue of a generalised nature for greater than six months that is exacerbated by minor exercise and that causes significant disruption of usual daily activities, 2. neuropsychiatric dysfunction including impairment of concentration evidenced by difficulty in completing mental tasks which were easily accomplished before the onset of the syndrome and new onset of short-term memory impairment, and 3. no alternative diagnosis found by history or physical exam over a six-month period. Psychiatric illness is not an exclusion criteria.

Ramsay says: (1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored

Not a definition of ME.

Oxford Definition 1991.

In 1991 Sharpe, Archard, Banatvala, Wessely, David, White et al. wrote the Oxford Criteria calling it 'A report - chronic fatigue syndrome: guidelines for research.’ Only consultant neurologist Lane attended the meeting. P. Behan, Professor of Neurology, contributed to it but was unable to attend the meeting and signed it. Seven were psychiatrists or psychologists. Two broad syndromes were defined - Chronic fatigue syndrome and Post-infectious fatigue syndrome (PIFS). Signs: There were no clinical signs characteristic of the condition, but it recommended that patients be fully examined, and the presence or absence of signs reported. Fatigue was defined as being synonymous with tiredness and weariness (that is not organic in origin). A clear description of the relationship of fatigue to activity is preferred to the term fatiguability they said. (Hyde et al. 1992). This makes fatigue a psychiatric condition - a form of avoidance or symptom of depression.

Disability, Mood disturbance, Myalgia, Sleep Disturbance, and a general comment on 'many other symptoms' are all considered. Psychiatric illness is not an exclusion criterion. (Mulrow, Ramirez 2001)

Myalgia is defined - but as i. this refers to the symptom of pain or aching felt in the muscles ii. it should be distinguished from feelings of weakness and from pain felt in other areas such as joints. iii The myalgia should a. complained of; b. be disproportionate to exertion c. be a change from a previous state d. should be persistent or recurrent. iv. The symptom should be described as follows; a. severity: mild, moderate, or severe; b. frequency and duration; c. relation to exertion; if after exertion the time of onset relative to the exertion and duration should be described.

The myalgia (meaning muscle pain), the hallmark of Ramsay's ME is optional, and is not included in the physical criteria either.

Ramsay says (1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored.

This is hence not a definition of ME. It is a description of a condition which has psychiatric fatigue without physical aetiology.

Fukuda et al (CDC) (1992, revised 1994).

Then there were the two versions of Fukuda et al. - 1992 and revised in 1994

Fatigue is sufficiently severe: of new or definite onset (not lifelong), not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social or personal activities; and FOUR or more of the following symptoms (all of which must have started after the onset of the fatigue) are concurrently present for 6 months:

1. Impaired memory or concentration

2. Sore throat

3. Tender cervical or axillary lymph nodes

4. Muscle pain

5. Multi-joint pain

6. New headaches

7. Unrefreshing sleep

8. Post-exertional malaise.

I note that post-exertional malaise is optional, as is muscle pain. In fact some of the symptoms of fatigue, impaired memory or concentration, unrefreshing sleep and new headaches (and throw in some unrelated muscle pain), and could be taken to describe other conditions - such as premenstrual syndrome! Many other conditions qualify for the label of chronic fatigue syndrome under these criteria especially if they are not differentiated by a medical specialist. Also note that there is no need for infection to be found in this definition nor an infectious onset - so this also leaves it open for people with other medical conditions to meet this criteria.

The Fukuda Definition excludes the following from a diagnosis of Chronic Fatigue Syndrome:

1. Active medical condition that may explain the chronic fatigue, such as untreated hypothyroidism, sleep apnoea, narcolepsy;

2. Previously diagnosed medical conditions that have not fully resolved, such as previously treated malignancies or unresolved cases of hepatitis B or C virus infection;

3. Any past or current major depressive disorder with psychotic or melancholic features, including bipolar affective disorders, schizophrenia, delusional disorders, dementias, anorexia nervosa, or bulimia nervosa;

4. Alcohol or other substance abuse within two years before the onset of chronic fatigue and at any time afterward (Komaroff & Buchwald 1998).

Psychiatric illness is not an exclusion criteria - Only major psychiatric illness such as psychotic depression, bipolar disorder and schizophrenia are excluded (Mulrow, Ramirez et al, 2001).

Again the hallmark of Ramsay's is not required.

Ramsay says (1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored.

Other explanations and criteria for chronic fatigue.

Other explanations for fatigue conditions have been written: e.g. Royal Colleges Report 1996, Australian Guidelines (RACP 2002). All are influenced by psychiatrists and moving along the psychiatric continuum. None equate to the above definition by Ramsay.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols: A Consensus Document (The Canadian Clinical Working Case Definition) (2003).

The Canadian Clinical Working Case Definition (Carruthers et al. 2003) has attempted to redress the balance and return to ME.

After fatigue there has to be post-exertional malaise and/or fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and /or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer. There is the need to meet 2 or more neurological/cognitive manifestations, and also pain. Other criteria are also listed.

This definition does meet Ramsay's criteria.

Ramsay says (1) a unique form of muscle fatigability whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored.

We can accept this as ME.

Only the criteria propounded by Ramsay and his contemporary peers, such as Dowsett (n.d, 1992), Richardson (1992, 2001), Wallis, et al. (Hyde 1992) defines ME - and Carruthers et al. (2003) is an acceptable commentary on ME.

(No definition includes the cardiac problems being found in ME/CFS.)

References:

Carruthers, B., Jain, A., De Meirleir, K., Peterson, D., Klimas, N., Lerner, A., Bested, A., Flor-Henry, P., Joshi, P., Powles, A., Sherkey, J. & van de Sande, M. 2003, ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols’, Journal of Chronic Fatigue Syndrome, K. De Meirleir & N. McGregor (eds.), Haworth, New York. vol.11, no.1, pp. 7-115.

Casse, R., Delfante, P., Barnden, L., Burnet, R., Kitchener, M. & Kwiarek, R. 2002, , The Medical Practitioners' Challenge: Proceedings of the Third Sydney International Clinical and Scientific Meeting 2001, Alison Hunter Memorial Foundation, Bowral, NSW, pp.135-142. Abstract at http://AHMF.org

Delbridge, A., Bernard, J., Blair, D., Butler, S., Peters, P. & Yallop, C. (eds.)1998, The Macquarie Dictionary, 3 edit., The Macquarie Library, Sydney.

Dowsett, E. n.d. ‘Brain Problems in ME/CFS: Is There a Simple Explanation?’, Young Action Online, http://www.youngactiononline.com/docs/brain.htm

Dowsett E. & Ramsay, A., Myalgic Encephalomyelitis: A persistent Enteroviral Infection?' The Clinical and Scientific Basis of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), B. Hyde, J. Goldstein & P. Levine (eds.), The Nightingale Foundation, Ottawa.

Fukuda, K., Straus, S., Hickie, I., Sharpe, M., Dobbins, J., Komaroff, A. and the International Chronic Fatigue Syndrome Study Group 1994, ‘The chronic fatigue syndrome: A comprehensive approach to its definition and study’, Annals of Internal Medicine, vol.121, pp.953-959.

Holmes, G., Kaplan, J., Gantz, N., Komaroff, A., Schonberger, L., Straus, S., Jones, J., Dubois, R., Cunningham-Rundles, C., Pahwa, S., Tosato, G., Zegans, L., Purtilo, D., Brown, N., Schooley, R. & Brus, I. 1988, ‘The CDC Definition : Chronic Fatigue Syndrome: A Working Case Definition’, Annals Internal Medicine, vol.108, no.3, pp.387-389.

Hyde, B. 1992a, ‘The Definitions of M.E./CFS, A Review’, The Clinical and Scientific Basis of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome), B. Hyde, J. Goldstein & P. Levine (eds.), The Nightingale Foundation, Ottawa.

Komaroff, A. & Buchwald, D. 1998, ‘Chronic Fatigue: An Update’, Annual Review Medicine, vol. 49, pp.1-13 Also at http://biomedical.AnnualReviews.org/cgl/content/full/8/49/1

Mulrow, C., Ramirez, G., Cornell & Allsup, 2001, Defining and Managing Chronic Fatigue Syndrome, Evidence Report/Technology Assessment, no.42, U.S. Department of Health and Human Services, AHRQ Publication, Rockville, Maryland.

Poser, C. 1992, 'The Differential Diagnosis Between Multiple Sclerosis and Chronic Fatigue Postviral Syndrome, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, B. Hyde, J. Goldstein & P. Levine (eds.), The Nightingale Foundation, Ottawa.

Ramsay, A. 1988, Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free Disease, Gower Medical Publishing, London.

RACP 2002, Chronic Fatigue Syndrome Clinical Practice Guidelines - 2002, Health Policy Unit, Royal Australasian College of Physicians, Sydney, The Medical Journal of Australia, Vol. 176, Supplement.

Richardson, J. 2001, Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Other Organ Pathologies, The Haworth Press Inc. New York.

Richardson, J. 1992, ‘M.E., The Epidemiological and Clinical Observations of a Rural Practitioner,’ The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, B. Hyde, J. Goldstein & P. Levine (eds.), The Nightingale Foundation, Ottawa.

Sharpe, M. Archard, L. Banatvala, J., Borysiewicz, L., Clare, A., David, A., Edwards, R., Hawton, K. Lambert, H., Lane, R., McDonald, E., Mowbray, J., Pearson, D., Peto, T., Preedy, V., Smith, A,., Smith, D., Taylor, D., Taylor, D., Tyrell, D., Wessely, S., White, P., Behan, P., Rose, F., Peters, R., Wallace, P., Warrell, D. & Wright, D. 1991, ‘A report - Chronic fatigue syndrome : Guidelines for research’, Journal of the Royal Society of Medicine, vol.84, pp.118-121. (The Oxford Definition).

© 2003.

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ME is Distinct from all other illnesses

Myalgic Encephalomyelitis is different form all other illnesses and as is very clearly pointed out above, M.E. is different from all the definitions of CFS.

Concerned that there may be attempts to confuse ME with other conditions, in 1989 Dr. Ramsay wrote a concise statement to clarify that M.E. is distinct and identifiable and is not to be confused with other forms of debility or flu or fatigue or post flu.

As we know, ME has many, many, many symptoms but Dr Ramsay presents this statement to clarify how ME is different from all other conditions, and a definite case can be recognized clinically by a triad of particular muscle, brain and circulatory dysfunctions that are characteristic.

We are indebted to Dr Ramsay, an outstanding infectious disease specialist who devoted much effort to the investigation of our disease from the time that he was confronted with the epidemic at the London hospitals in the 1950’s. Dr Ramsay is the recognized authority in ME, established upon his direct personal involvement in the investigation of the epidemics, research and scientific studies and the examination and treatment of individual patients for over 30 years. Dr. Ramsay’s fame and standing are no accident and we can see that his descriptions of what make this disease unique are accurate and Ramsay’s M.E. is the same disease we have today.

It is clear that attempts at confusion and name changes would serve to obscure its history and also its origins. So we must never forget Ramsay. The worldwide epidemic we have today is the same disease that Ramsay encountered many years ago.

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( It is fortunate that a second edition of my monograph affords me the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of postviral fatigue syndrome.)

The Myalgic Encephalomyelitis Syndrome

A. Melvin Ramsay M.A. M.D.

The clinical identity of the Myalgic Encephalomyelitis syndrome rests on three distinct features, namely:

A. A unique form of muscle fatiguability whereby, even after a minor degree of physical effort, 3, 4, 5 days or longer elapse before full muscle power is restored.

B. Variability and fluctuation of both symptoms and physical findings in the course of a day. And,

C. An alarming tendency to become chronic.

If we take the well known condition of post influenzal debility as an example of a postviral fatigue state we see that in all these particulars it constitutes a complete contrast. The fatigue of post influenzal debility is part of a general debility with no distinguishing characteristic of its own, it shows no variation in intensity in the course of a day and although it may last weeks or even many months it has no tendency to become chronic.

The clinical course of the Myalgic Encephalomyelitis syndrome is consistent with a virus type of infection. It most commonly commences with an upper respiratory tract infection with sore throat, coryza, enlarged posterior cervical glands and a characteristic low-grade fever with temperatures seldom exceeding 101°F. Alternatively there may be a gastro-intestinal upset with diarrhoea and vomiting. In 10% of the 53 cases we reported between 1955 and 1958 the onset took the form of acute vertigo often accompanied by orthostatic tachycardia.

The prodromal phase is characterised by intense persistent headache, paraesthesiae, blurring of vision and sometimes actual diplopia. Intermittent episodes of vertigo may occur at intervals both in the prodromal and later phases of the disease. Loss of muscle power is accompanied by an all-pervading sense of physical and mental wretchedness. Some patients lack the mental initiative to cope with the situation; on the other hand the more extrovert types show a determination not to give in to the disease but their efforts to compel their muscles to work only serves to make the condition worse.

Once the syndrome is fully established the patient presents a multiplicity of symptoms but these can conveniently be discussed under three headings, namely:

1. Muscle Phenomena

The unique form of muscle fatiguability described above is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made. I am informed of two families who are said to have all the conditions conforming to the clinical picture but lacking the muscle fatiguability. These cases should be very carefully reviewed. It is quite common to find that muscle power is normal during a remission and in such cases tests for muscle power should be repeated after exercise.

In severe cases of M.E. muscle spasm and twitchings are a prominent feature and these give rise to acute muscle tenderness. In less severe cases muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved in M.E.) with the tip of the forefinger should enable the examiner to detect minute foci of exquisite tenderness. It is interesting to note that Dr. Garnet Simpson in Sydney, Australia (1986) without any prior knowledge of my writings devised the identical technique and found that detection of these foci 'will make the patient yelp'. In the aftermath of the disease patients frequently complain of a tendency to 'fumble' with relatively simple manoeuvres such as turning a key in the lock or taking a cork out of a bottle.

2. Circulatory Impairment

Most cases of M.E. have cold extremities and hypersensitivity to climatic change but the most striking illustration of this conditionis the observation by relatives or friends of an ashen-grey facial pallor some 20 or 30 minutes before the patient complains of feeling ill.

3. Cerebral Dysfunction

Impairment of memory, impairment of powers of concentration and emotional lability are the cardinal features. Inability to recall recent events, difficulty in completing a line of thought thus becoming 'tongue-tied' in the middle of a sentence and a strong inclination to use wrong words, saying 'door' when they mean 'table' or 'hot' when they mean to say 'cold' are all common deviations from normal cerebral function. Complete inability to comprehend a paragraph even after a second reading is very noticeable. These may be accompanied by bouts of uncontrollable weeping which proves acutely embarrassing to those of a stoical temperament who regard such an event as demeaning to their philosophy of life. Alterations of sleep rhythm and/or vivid dreams are common and these occur in patients with no previous experience of such phenomena. In a very tragic case in a young University student complete reversal of sleep rhythm led to suicide.

Frequency of micturition and hyperacusis are an almost invariable accompaniment of these cerebral features and together with episodic sweating and orthostatic tachycardia can only be attributed to involvement of the autonomic nervous system. Though less frequently encountered episodic sweating is a very striking event. The wife of one such case is a trained nurse and reports that her husband may wake around 4 a.m. lying in a pool of water and with a temperature of 94 to 95°F. I diagnosed this patient as a case of M.E. fifteen years ago; the sweating episodes still persist.

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of M.E.

The Chronicity of Myalgic Encephalomyelitis

The alarming tendency of M.E. sufferers to become chronic is the final distinguishing feature from all other forms of postviral fatigue syndrome. In a group of 150 members of the Association in the North of England 36 have had the disease for 10 years or more. Of 55 members in a small group in Surrey 29 have had the disease for 10 years or more; of these 4 have had the disease for over 20 years, 4 have had it for over 30 years and one for over 40 years. One member in the north country group has also had it for over 40 years. I am fully satisfied that at a conservative estimate 25% of victims of M.E. have had the disease for 10 years or more. Only Myalgic Encephalomyelitis has such a legacy.

The chronic case of M.E. can take two different forms. In the first there is a recurring cycle of remission and relapse. In three doctors who contracted the infection between 1955 and 1958 the endless alternation of remission and relapse, still continues. In my experience a remission can last as long as 3 years. Marinacci and Von Hagen record one of seven years. The second form of chronic M.E. is more tragic in that no remission occurs. The patient lives a very restricted existence, unable to walk more than a short distance and that with considerable difficulty, unable to read for any length of time and in many cases subject to disturbance of sleep rhythm and/or vivid dreams and always the almost invariable frequency of micturition, hyperacusis and dizzy spells. A few of these chronic cases are compelled to sleep upright as a result of permanent weakness of the intercostal and abdominal recti musculature.

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A very important presentation was delivered at a 1998 international research meeting that we all should be aware of, it explains that CFS appears to be the invention of an unnatural disease and a fiction, devised by a group of US government employees in 1988 to describe the epidemic of Myalgic Encephalomyelitis that was exploding worldwide.

See Dr. BM Hyde’s paper here: http://www.nightingale.ca/ICaustralia2.html

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The Committee encourages everyone to voice their support for the efforts to demand the US Department of Health fully Recognize Myalgic Encephalomyelitis by signing the Petition which can be seen here: http://www.petitiononline.com/MEitis/petition.html

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©2003

The Committee for Justice

and Recognition of Myalgic Encephalomyelitis

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