Copyright © by Jodi Bassett February 2006 on www.ahummingbirdsguide.com
This version updated January 2007

Many of the articles on Myalgic Encephalomyelitis (M.E.) in the mainstream media (and even some of the medical texts on the illness) unequivocally proclaim that not only are there no tests which can be utilised to help confirm a M.E. diagnosis, but that despite extensive testing no objective or quantifiable abnormalities have ever been found in any patients with M.E. whatsoever.

Despite their popularity, these are simply absurd claims.

The reality is that objective evidence of quantifiable organic abnormalities in Myalgic Encephalomyelitis patients has existed since the 1950’s. Not only are there a series of tests which do allow a M.E. diagnosis to be confirmed, but more than 1000 medical studies have shown a variety of measurable and in some cases extremely severe abnormalities in many different bodily systems of M.E. (or ICD-CFS) patients. Tests will only all be normal – as with all illnesses – if the wrong tests are done, or if those tested do not in fact have M.E. in the first place.

Contrary to much of the propaganda surrounding the illness, it is also not ‘fatigue’ or ‘tiredness’ that is the one essential characteristic of M.E. but central nervous system (CNS) dysfunction. As M.E. expert Dr Byron Hyde MD explains: ‘The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.’ Thus it is these tests which are therefore most critical in the diagnosis of M.E., although various other types of tests are also useful.

Some of the series of tests which can (in combination) help to confirm a M.E. diagnosis include:

SPECT and xenon SPECT scans of the brain

SPECT scans have demonstrated decreased cerebral blood flow most frequently in the frontal, parietal, temporal, occipital and brain stem areas of the brain. These abnormalities have also been shown to correlate with clinical status. Dr Byron Hyde MD adds that, ‘I do not describe a patient as having M.E. unless there is an abnormal SPECT. If the SPECT is normal, I often repeat it along with xenon SPECT. If the brain scans remain normal, I conclude that it is unlikely to be M.E.’

MRI scans of the brain

Punctate, subcortical areas of high signal intensity consistent with edema or demyelination were identified by MRI in 78% of M.E. patients (similar to those seen in MS). Research has shown that an estimated 80% of M.E. patients will have abnormal MRI scans. M.E. patients with abnormalities on MRI have been reported as being more severely impaired than those without such abnormalities.

PET scans

PET scans have shown decreased metabolism of glucose in the right mediofrontal cortex and generalised hypoperfusion of the brain with a particular pattern of decreased neuronal metabolism in the brain stem.

Of the CNS dysfunctions that make up M.E., cognitive dysfunction is easily one of the most disabling characteristics of the illness. Neuropsychological testing can be used to identify cognitive dysfunction and/or to confirm a M.E. diagnosis. It should focus on the abnormalities known to differentiate M.E. from other causes of organic brain dysfunctions.

EEG brain maps and QEEG brain maps

95% of M.E. patients have been found to have abnormal cognitive-evoked EEG brain maps. But Dr Byron Hyde MD argues that QEEG brain maps are even more accurate and that they, ‘have been able to demonstrate not only lack of normal activity in M.E. patients but migration of the normal activity centers from injured areas to different parts of the brain.’

Neurological examination and the Romberg or tandem Romberg test

Most M.E. patients have abnormal neurological examination. The Romberg test is a useful test of brain stem function, Professor Malcolm Hooper explains that, ‘In his 1995 Australian Workshop, ICD-CFS expert Dr Paul Cheney said that more than 90% of patients have an abnormal Romberg versus 0% of controls.’

The immune system abnormalities in M.E. patients mimic the immune pattern seen in viral infections. Specific findings include (but are not limited to): Increased numbers of activated cytotoxic T cells (most patients have evidence of T-cell activation), Low natural killer cell numbers/percentage and function (cytotoxicity), Elevated immune complexes, Atypical lymphocyte count, Significantly reduced CD8 suppressor cell population and increased activation marker (CD38, HLA-DR) on CD8 cells, Abnormal CD4/CD8 ratio, Elevations of circulating cytokines and Immunoglobulin deficiencies (most often IgG 1 and IgG 3)

A more specific immune system abnormality has been discovered in M.E. of increased activity and dysfunction of the 2-5A RNase-L antiviral pathway in lymphocytes. The dysregulation of the RNase-L pathway strongly supports the hypothesis that viral infection plays a role in the pathogenesis of the illness. Between 80 - 94.7% of patients have evidence of an up-regulated 2-5A antiviral pathway. The degree of elevation of 37 kDa Rnase L has also been shown to correlate with symptom severity. This test is as yet not widely available but may be one of the most useful tests in helping to diagnose M.E. in the future.

An unusually low sedimentation rate of less than 5mm/hr is common in M.E.

Derangement of insulin response is a frequent finding in M.E. patients. Glucose tolerance curves are often abnormal.

A 24 hour Holter monitor (a type of heart monitor) may show repetitively oscillating T-wave inversions and/or a flat T-wave may be found. Holter monitors may also show heart rates as high as (or higher than) 150 beats per minute as an immediate or delayed response to the patient maintaining an upright posture, or at rest. Heart rates as low as 40 beats per minute may also be observed (during sleep).

Tilt Table Examination

Orthostatic intolerance is very common in M.E. patients and may manifest as one of, or a combination of the following: Neurally mediated hypotension (NMH): Postural orthostatic tachycardia syndrome (POTS) or Delayed postural hypotension.

Cardiopulmonary exercise testing is widely used for the diagnosis (and functional assessment) of various cardiac and metabolic disorders and can also be used in the diagnostic evaluation of M.E. patients. Heart rate and blood pressure responses during the exercise test may reveal abnormalities specific to ME including: lower cardiovascular and ventilatory values at peak exercise (patients only being able to attain half the expected maximal workload and oxygen uptake compared to sedentary controls), elevated resting heart rates and an inability to reach maximum age-predicted heart rates.

As exercise tests are not appropriate for many M.E. sufferers, Dr Byron Hyde MD writes: ‘Patients with ME frequently cannot do exercise tests, and so I then do chemical testing as a second best.’

There are also a variety of abnormalities visible on physical exam in M.E. patients. These abnormalities are not usual in healthy patients but they are also found in people with other organic illnesses (so they are not specific to M.E.). The post-exertional paralytic muscle weakness unique to M.E. should also be tested for; a diagnosis of M.E. should never be made without this characteristic being present.

In conclusion

Contrary to popular belief, Myalgic Encephalomyelitis is a distinct, recognisable entity that can be diagnosed relatively early in the course of the disease, providing the physician has some experience with the illness. The new non-fatigue-based clinical definition of the illness the Canadian Guidelines (although not perfect) now also make diagnosis easier than ever before even for those with no experience with M.E., as do the excellent papers on diagnosis and testing compiled by M.E. expert of more than 20 years Dr Byron Hyde M.D. (See the full-length version of this text for more information on both of these resources.)

Whilst various ‘fatiguing conditions’ with a variety of different aetiology’s may be made up of vague and mild ‘everyday’ type symptoms, have no physical signs and no tests which have shown abnormalities or that can aid diagnosis; Myalgic Encephalomyelitis (and M.E. equivalent CFS) shares none of these characteristics.

Myalgic Encephalomyelitis is a distinct organic neurological disorder (which can occur in both epidemic and sporadic forms) that has been recognised as such by the World Health Organisation in their International Classification of Diseases (ICD) since 1969 with the code G93.3. As The M.E. Society of America explain: ‘Unlike somatisation disorder, M.E. is not ‘medically unexplained.’ M.E. is a disease which, like lupus, has no single marker. M.E. is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. These are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture.’

• See the full-length Testing for M.E. for more information on this text as well as on all other aspects of diagnosis (and for references).
• See What is M.E.? for more information on all medical and political aspects of M.E.
• See The misdiagnosis of CFS for information on what a diagnosis of ‘CFS’ based on any of the CFS definitions actually means. See Smoke and Mirrors for a discussion of why the disease category of 'CFS' must be abandoned..

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 *Note: The term ICD-CFS may not be widely known as yet but is used to ensure the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases (as another name for the severely debilitating organic neurological disorder Myalgic Encephalomyelitis) and the - politically and financially motivated - vague, all encompassing and broadly defined 'fatiguing' version of CFS - two entirely different problems.

It is also important to be aware that in practice M.E. and CFS are not synonymous terms. For more information about how two completely unrelated health problems came to sometimes share a name see What is M.E.? See Smoke and Mirrors for a discussion of why the disease category 'CFS' must be abandoned.