NOTES ON MEDICAL REFERENCE PAPERS

Myalgic encephalomyelitis (ME) is an internationally recognised syndrome and is formally listed in the International Classification of Diseases by the World Health Organisation as a "disorder of the brain" (i.e. as a neurological condition).

There are many reports of the syndrome in the medical literature dating from 1934.

Chronic fatigue syndrome (CFS) is a term which was first introduced in 1988, into which ME has been subsumed.

Earlier reports describing ME contain clear reference to the unmistakable neurological features, whereas early reports of CFS do not, focusing instead on symptoms commonly found in glandular fever.

Case Definitions vary remarkably, and there is appalling confusion over terminology and about selection and definition of patients studied. In 1991 a group of UK doctors (mostly psychiatrists) produced a new case definition which specifically excluded all neurological signs but which specifically included all cases of medically unexplained fatigue which had been present for six months. This was a retrograde step, as it broadened the official case definition to include many psychiatric conditions, particularly those in which tiredness and sleep disturbance predominate. These psychiatrists (led by Professor Simon Wesley of Kings College Hospital, London and known as the Wesley School") claim that ME does not exist, and that it is entirely synonymous with CFS and that CFS is a functional somatic (i.e. psychiatric) syndrome. Wesley is an adviser on CFS / ME to the UK Government. Fatigue syndromes are formally classified in the ICY as psychiatric conditions. In the United States, case studies and patient selection criteria are much more rigorous than in the UK, with the result that papers on CFS are describing cases of ME.

The UK National Task Force on CFS / ME recommends that the term "CFS(ME)" be used to describe those who are more severely and chronically affected.

Unless lawyers are aware of this confusing background, they will be unable to look after the best interests of their clients, as is their duty.

Over 3000 reference papers (dating back to 1884) have been obtained.

A representative selection is listed here. Given that CFS / ME is a dysfunction at cell membrane level, it affects virtually all bodily systems to some degree, so it is not easy to divide these medical reference papers into discrete sections and / or medical disciplines. It is therefore imperative to be familiar with all sections listed.

Individual papers are cited below, being roughly divided into the following broad sections.

HISTORICAL PAPERS ON CFS / ME

These date from 1955 – 1991, and include an historical summary from 1750 (published in 1991 in Reviews of Infectious Diseases).

GENERAL PAPERS ON CFS / ME

These papers cover more than one aspect of CFS / ME and include for example evidence of impaired oxygen delivery to muscle; evidence of delayed recovery from fatiguing exerCFSe and lists of symptoms commonly found in CFS / ME (which number over 60).

LABORATORY FINDINGS IN CFS / ME

Although there is as yet no single, specific, definitive test for CFS / ME (which is also the case in numerous other medical conditions), nevertheless there is an entirely consistent and reproducible pattern of abnormalities which have been observed worldwide. Such abnormalities particularly include immunological, neuroendocrinological, nuclear imaging and psychometric parameters. However, psychiatrists of the Wessely School persistently advise both Government and medical practitioners that no tests should be performed on CFS patients with the exception of psychiatric tests (which they claim are mandatory in all cases); these psychiatrists are funded largely by The Linbury Trust (Sainsbury), which in 1998 produced a "CFS Research Portfolio" (edited by Robin Fox, a former editor of the Lancet and published by The Royal Society of Medicine) which categorically states that searching for causes is not only futile but may prevent recovery.

QUALITY OF LIFE IN CFS / ME

One international CFS / ME expert writes that in his experience, CFS / ME "is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages". Australian research describes CFS / ME patients as suffering more dysfunction than multiple sclerosis sufferers; the .sickness impact profile (SIP) is more extreme than in end-stage renal disease and heart disease, and only in terminally ill cancer patients has the overall SIP score been found to reach that found in CFS / ME. American research found that the quality of life in patients with CFS / ME is significantly, particularly and uniquely disrupted, and that the illness causes marked disruption and devastation. Scandinavian research has shown that patients with "non-visible" disability suffer more stigmatisation than those with visible disability.

CHRONICITY AND SEVERITY OF CFS / ME

This section provides evidence of the natural history of severe CFS / ME, showing that the prognosis is extremely poor for the severely ill subset, with no symptom improvement, and it shows symptom patterns in long‑duration CFS.

PRECIPITATING FACTORS IN CFS / ME

The syndrome is known to be related to a dysfunctional stress response, and there is evidence that precipitating factors include physical trauma (specifically a breakdown in the blood‑brain barrier) and critical life events. Other factors include infections; anaesthesia; immunisations and exposure to certain chemicals.

NEUROENDOCRINE ABNORMALITIES IN CFS / ME

This section shows evidence for and implications of the endocrine disruption found in CFS / ME, especially that associated with hypothalamic‑pituitary adrenal axis dysfunction.

NEUROLOGICAL ABNORMALITIES IN CFS / ME

These papers show commonly found dysfunction in both the central nervous system and in the autonomic nervous system; they include papers on dysequilibrium and vertigo which are known components of severe CFS / ME.

DEMYELINATION IN CFS / ME

Evidence of demyelination and cerebral oedema has been documented in the CFS / ME literature since 1988.

OCULAR PROBLEMS IN CFS / ME

There is evidence that such problems include intermittent jelly‑like nystagmus; difficulty in accommodation / focusing / visual acuities; photosensitivity; photophobia; blurred vision; double vision; crusted eyes; dry eyes; itchiness; narrowed arterioles; retinal defects; fibrillar changes in vitreous; chorioretinal macular abnormalities and optic pallor (the latter is also observed in MS). Objective findings of the anterior segment suggest an organic aetiology.

LIVER INVOLVEMENT (HEPATOMEGALY) IN CFS / ME

Published evidence shows that enlargement of the spleen and liver is not unusual. Evidence shows infiltration of the splenic sinuses by atypical lymphoid cells, with reduction in white pulp, suggesting a chronic inflammatory process.

HAIR LOSS IN CFS / ME

Hair loss in CFS / ME is documented in the literature. One author states "It is a rare woman with CFS who has not had hair loss, usually diffuse and non-scarring". Elsewhere, it is documented as occurring in 20% of patients.

VIROLOGY IN CFS / ME

Evidence reveals the known tropism of Coxsackie B viruses for muscle, brain, heart and pancreas, all of which are documented as being target organs in CFS / ME. There is also evidence of human herpes virus 6 (HHV6) reactivation playing a role in the pathogenesis of both CFS / ME and MS. HHV6 Variant A is more common in AIDS and CFS / ME, whilst Variant B is found in MS. HHV6 used to be called human B‑lymphotropic virus (HBLV); it was discovered in 1986.

It is possible that reactivation of a composite viral load occurs as an epiphenomenon of an underlying immune system dysfunction, thus giving rise to the protean symptornatology.

STRESS ENHANCES SUSCEPTIBILITY TO INFECTION

There is substantial evidence that concurrent stress at the time of viral exposure leads to more severe disease. Stress is known to increase susceptibility to those diseases which are immune‑related, e.g.. infectious disease, cancer and autoimmune disorders.

IMMUNOLOGY IN CFS / ME

The most commonly found immune abnormalities are very low natural killer (NK) cells, with decreased cytolytic activity, and an increased CD4 ‑ CD8 ratio; there is an increase in the CD8+ cytotoxic T cells bearing antigenic markers of activation on their cell surface; there are higher frequencies of low levels of various autoantibodies, especially anti­nuclear and anti‑smooth muscle antibodies; there are low levels of circulating immune complexes; there are increased levels of IgE and decreased levels of IgG3. Low levels of IgG3 have been reported since 1986 in patients with aching muscles. Overall, these abnormalities are consistent with evidence demonstrating chronic, low‑grade immune activation in CFS / ME.

Importantly, it has been convincingly demonstrated that changes in different immune parameters correlate with particular aspects of disease symptornatology and severity.

ALLERGIES and MULTIPLE CHEMICAL SENSITIVITY (MCS) IN CFS / ME

The relationship between viral infections and onset of allergic disease is well documented in the medical literature.

With specific relationship to CFS / ME, there is overwhelming published evidence that allergies, food intolerance and multiple chemical sensitivities (MCS) are very common; an increasing sensitivity and adverse reaction to many drugs / therapeutic substances is widely believed to be virtually pathognomonic of CFS / ME.

Cells cannot be attacked by the immune system unless they display on their surfaces complex glycoprotein molecules known as Class 11 MHC antigens; cells can be induced to do this by gamma‑interferon, which is an anti‑viral chemical produced by the immune system when under viral attack.

Allergies in CFS / ME are thought to be the result of this mechanism, which makes the body cells susceptible to on‑going attack by the immune system.

Because reference to allergies is so widespread throughout the CFS / ME literature, many of these references are to be found throughout these reference papers, mostly in the sections on General CFS / ME, Immunology and Neuroendocrinology

More and more patients are presenting themselves with "total allergy syndrome"; ‑this is recognised as part of CFS / ME; whilst some psychiatrists are notoriously dismissive about its existence, the literature (from highly reputable internationally acclaimed experts) clearly shows that it does exist, and that such patients do indeed develop abnormal immune parameters whilst under observation. A leading professor of clinical immunology has published papers confirming that these are patients with multiple sensitivities, and that their symptoms are not all in the mind.

ANAESTHESIA PROBLEMS IN CFS / ME

It is well‑established that patients with CFS / ME and others with neuromuscular dysfunction can have problems with anaesthesia ‑‑‑ depolarising muscle relaxants have a known risk of causing potassium release from muscle, which can lead to cardiac arrest, and it is important to avoid histamine releasers. Muscle weakness increases the risk of respiratory failure.

VASCULAR PROBLEMS IN CFS / ME

References to vascular problems in CFS / ME have been in the medical literature from 1938. Such problems include vasomotor instability; impaired blood flow in the micro­circulation consistent with inflammatory processes; vasculopathy including Reynard’s disease and cutaneous vasculitis; vasculitis of the liver and cerebral hypo perfusion due to vasculitis.

HEART PROBLEMS IN CFS / ME

Documented problems include myocarditis; chronic pericarditis; paroxysmal attacks of chest pain (Syndrome X); palpitations, with sinus tachycardia being particularly troublesome; shortness of breath (due to fatigue of the voluntary muscles of respiration); flattening and inversion of T waves; a lower stroke volume and cardiac output (indicating a defect in the higher cortical modulation of cardiovascular autonomic control). CFS / ME patients have higher heart rates and lower pulse pressure and have baseline differences from normals.

LUNG / RESPIRATORY PROBLEMS IN CFS / ME

Evidence shows that CFS / ME patients have a significant decrease in vital capacity (VC). The incidence of bronchial hyper‑responsiveness is remarkably high. Compared with controls, CFS / ME patients showed a significant reduction in ail lung function parameters studied.

GUT DYSFUNCTION IN CFS / ME

Irritable bowel syndrome (IBS) is so widespread and common a problem in CFS / ME that reference to it is to be found throughout various sections of the reference papers, in particular in the section on Quality of Life in CFS / ME.

BRAIN IMAGING IN CFS / ME

The literature contains objective evidence of brain impairment in the majority of patients which is compatible with a chronic viral encephalitis. Patients have a particular pattern of hypo perfusion of the brainstem. Brain perfusion impairment in CFS / ME provides objective evidence of central nervous system dysfunction.

COGNITIVE DYSFUNCTION IN CFS / ME

Neuropsychological testing reveals a pattern of cognitive impairment which is compatible with an organic brain lesion. Tests on CFS / ME patients revealed a performance which was sevenfold worse than that found in either the controls or in depressed patients. Results indicate that the memory deficit in CFS / ME is more severe than has been assumed by the CDC criteria. A pattern has emerged of brain behaviour which supports neurological compromise in CFS / ME.

PSYCHOLOGICAL PROBLEMS IN CFS / ME

There is a substantial body of literature which strongly refutes claims that patients are overly suggestible; it is quite specific that patients are not somatising, and it confirms that patients are not exhibiting "abnormal illness behaviour" and that the illness is not explained by inactivity or psychiatric disorder. Depressive symptoms are more likely to be a consequence rather than a cause of illness. Serious doubts are raised about the validity of the application of a psychiatric label. A conviction by patients of physical illness is understandable and legitimate.

OVERLAP WITH FIBROMYALGIA SYNDROME

Whilst there are considerable overlaps of symptornatology between CFS / ME and fibromyalgia, there are significant differences. Of foremost importance is the fact that the WHO recognises and specifies that they are two different syndromes. The literature recognises that up to 70% of those with CFS / ME also have concurrent fibromyalgia, and that this represents an additional burden of suffering amongst those with CFS / ME.

PATTERNS OF MEDICAL MISDIAGNOSIS

Misdiagnosis is very common in complex and poorly understood illness and patients are often ignored or dismissed by medical practitioners without justification. This increases their suffering. The literature abounds with evidence that patients have often been given an inappropriate label (usually by psychiatrists), and that such labels abruptly disappear when medical science and knowledge discover an underlying organic aetiology. Examples are legion, and include diabetes, hypothyroidism, pernicious anaemia, peptic ulcer, multiple sclerosis and Parkinson's disease ‑‑ in the 1940s, psychiatrists claimed that the intention tremor was due to the inner conflict of the patient who wished to masturbate but who knew it was wrong, and that the intention tremor was a manifestation of such inner conflict; it was not until the discovery of the neurotransmitters and the role of dopamine that such views were abandoned. Unfortunately, some psychiatrists seem unable learn from past experience.