The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Testing for M.E. - Summary

Testing for Myalgic Encephalomyelitis provides a basic overview of some of the series of tests which can be done to help confirm a suspected M.E. diagnosis (and also contains further information on many other aspects of diagnosis). 

This page features the shorter summarised version of the text.

(This summary is also available in spoken word/mp3 or video format, see the Audio and video page for details.)

See the Downloads section below to download this paper in Word or PDF format.

Testing for M.E. - Summary

Copyright © Jodi Bassett February 2006. This version updated June 2012. From www.hfme.org                         

M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease, within just a few weeks, providing that the physician has some experience with the disease. There is just no other disease that has all the major features of M.E.

 

Objective evidence of quantifiable organic abnormalities in M.E. patients has existed since the 1950s. As with a wide variety of illnesses – lupus, multiple sclerosis, and ovarian cancer for example – there is as yet no single test which can diagnose M.E. in all patients. Therefore, like these other illnesses, M.E. must be diagnosed by taking a detailed medical history, noting the type and severity of symptomatology and other characteristics of the illness and the type of onset of the symptoms. (An acute or sudden onset of symptoms is always seen in M.E. and this onset type rules out a wide variety of other illnesses associated with gradual onset). A series of tests may also then be necessary to rule out or confirm a suspected M.E. diagnosis.

 

One cannot test for ‘CFS’ but M.E. is not the same thing as ‘CFS’ (or ‘ME/CFS.’) The presence or absence of ‘fatigue’ is largely irrelevant in determining an M.E. diagnosis except in that its presence may of course make the diagnosis of a large number of well-known fatigue causing illnesses considerably more likely (depression, vitamin deficiency or malignancy for example) (Hyde & Jain, 1992). M.E. is not a diagnosis of exclusion or an untestable disease. Tests will only all be normal in M.E. patients – as with all illnesses – if the wrong tests are conducted, or if those tested do not in fact have M.E. (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Chabursky et al. 1992, p.22).  

 

Contrary to common disinformation erroneously linking M.E. with ‘CFS,’ it is not mere ‘fatigue’ that defines M.E. but central nervous system (CNS) dysfunction. M.E. represents a major attack on the CNS by the chronic effects of a viral infection which targets the brain: an enterovirus. As M.E. expert Dr Byron Hyde explains:

The one essential characteristic of M.E. is acquired CNS dysfunction. 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 changes: SPECT, xenon SPECT, PET, and neuropsychological testing (2003, [Online]).

 

Tests which together can be used to confirm an M.E. diagnosis include:

SPECT and xenon SPECT scans of the brain. SPECT scans have demonstrated decreased cortical/cerebellar regional cerebral blood flow most frequently in the frontal, parietal, temporal, occipital and brain stem areas of the brain, and throughout the cerebral cortex in M.E. This decrease in cerebral blood flow has been found to have worsened further still 24 - 72 hours post-exertion. These abnormalities have also been shown to correlate with clinical status.

 

MRI scans of the brain. Punctate, subcortical areas of high signal intensity consistent with edema or demyelination have been identified by MRI in 80% or more of M.E. patients (similar to those seen in MS).  M.E. patients with these MRI abnormalities have been reported as being more severely impaired than those without such abnormalities.

 

PET scans of the brain. PET scans of the brain 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.

 

EEG/QEEG brain maps. Almost all M.E. patients have abnormal cognitive-evoked EEG brain maps. QEEG brain maps are even more accurate as 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. Most M.E. patients will have an abnormal neurological exam.

 

Neuropsychological testing. This test can uncover the specific cognitive dysfunctions of M.E.

 

The Romberg test. The Romberg test is a useful test of brain stem function. Almost all M.E. patients will have an abnormal Romberg test.

 

Immune system tests. Natural killer cell number and function is particularly low in M.E., for example.

Insulin levels and glucose tolerance tests.

 

Erythrocyte Sedimentation Rate (ESR) tests. An unusually low sedimentation rate of less than 5mm/hr is common in M.E. ESR rates as low as 0 have been documented in M.E. patients. There are only five diseases that have a pathological low sedimentation level: Myalgic Encephalomyelitis, sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia and hyper-fibrogenemia.

 

Circulating blood volume tests. This test may show a reduced circulating blood volume of up to 50%.

 

24 hour Holter monitor testing (a type of heart monitor). May show repetitively oscillating T-wave inversions and/or a flat T-wave and 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 and standing/sitting/reclining blood pressure tests. Dr Byron Hyde explains that testable vascular and cardiac dysfunction is the most obvious set of dysfunctions when looked for and is the cause behind a significant number of M.E. complaints, and that all moderate to severe M.E. patients have one or more of the following vascular dysfunctions: Severe postural orthostatic tachycardia syndrome (POTS), cardiac irregularity on minor positional changes or after minor physical activity, Raynaud’s phenomenon, circulating blood volume decrease, bowel dysfunction caused by vascular dysfunction, Persantine effect in M.E. patients, M.E. associated clotting defects, anti-smooth muscle antibodies  and other cardiac dysfunctions.

 

Exercise testing and chemical stress tests. These tests are not appropriate for severely ill patients.

 

Physical exam. Physical signs of illness commonly observed in M.E. patients include:

  • Nystagmus
  • Sluggish visual accommodation or unequal pupils and contrary pupil reaction to light
  • A labile blood pressure (sometimes as low as 84/48 in an adult at rest)
  • Shortness of breath (particularly on exertion)
  • Subnormal temperature
  • Cogwheel movement of the leg on testing
  • Muscular twitching or fasciculation
  • Hyper-reflexia without clonus
  • Destruction of fingerprints is sometimes seen (atrophy of fingerprints is due to perilymphocytic vasculitis and vacuolisation of fibroblasts)
  • Ghastly pallor of face with frequent lupus-like submaxillary mask or facial vasculoid rash
  • Parkinsonian rigidity of facial expression
  • Scanning, disjointed speech, or speech reversals
  • Sicca syndrome of conjunctiva and mucous membranes
  • Frequent equivocal Babinski/plantar reflex on one side
  • Nodular thyroid

 

These tests are the most critical in the diagnosis of M.E., although various other types of tests are also useful.

 

Positive PCR tests for enteroviral infection have been documented in a large percentage of M.E. patients that have been given this test. Enteroviruses become harder to pick up over time, although there are reports of some patients still testing positive for enterovirus infections 10 years or longer after the onset of M.E. A patient that once tested positive for enteroviral infection may return a negative test some years later. But this negative test result should not be assumed to indicate that the patient’s disease status has necessarily changed as Dr Hyde reports that whether subsequent tests were positive or negative patients remained similarly disabled (Hyde 2011, [Online]).

 

M.E. expert Dr Byron Hyde’s Nightingale Definition of M.E. also now makes diagnosis easier than ever before even for those with no prior experience in diagnosing M.E. This is a pure M.E. definition and, most importantly, it defines M.E. as testable (see the full-length text for details)  (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett n.d., [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).

 

 

  • See the full-length Testing for M.E. text for more information on this topic.

  • A note on ‘CFS’ testing and redefinitions: Whilst various ‘fatiguing conditions’ with a variety of different aetiologies may be made up of vague and mild ‘everyday’ symptoms, with no observable signs and no tests which have shown abnormalities or that can aid diagnosis, M.E. shares none of these characteristics. M.E. is not described by any of the definitions of ‘CFS’ or ‘ME/CFS’ (including the Canadian ‘ME/CFS’ definition or the ICC). Many patients can and do fit these (wastebasket) definitions that have diseases other than M.E. For more information see What is M.E.? and Who benefits from 'CFS' and 'ME/CFS'?  See The misdiagnosis of CFS for information on why ‘CFS’ is always a misdiagnosis or non-diagnosis.

  • A note on testing availability in M.E.: Objective scientific tests are available which can aid in the diagnosis of M.E. and easily prove the severe abnormalities across many different bodily systems seen in M.E. Unfortunately many (in fact most) patients are not given access to these tests. Problems also exist with doctors not being familiar with the abnormalities on testing seen in M.E. and so misinterpreting the results of some tests. The problem is not that these tests don’t exist, but that doctors – and many patients – are unaware of this information on testing, that it is not generally accepted due to the nefarious influence of political and financial vested interest groups, and that there are overwhelming financial and political incentives for researchers to IGNORE this evidence in favour of the bogus ‘CFS’ (or ‘subgroups of ‘ME/CFS’) construct.For more information on the lack of access to appropriate testing for M.E. patients see Testing for M.E.

References

All of the information concerning Myalgic Encephalomyelitis on this website is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts. More experienced and more knowledgeable M.E. experts than these – Dr Byron Hyde and Dr. Elizabeth Dowsett in particular – do not exist. Between Dr Byron Hyde and Dr. Elizabeth Dowsett, and their mentors the late Dr John Richardson and Dr Melvin Ramsay (respectively), these four doctors have been involved with M.E. research and M.E. patients for well over 100 years collectively, from the 1950s to the present day. Between them they have examined more than 15 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E., and books (or chapters in books) on M.E. Again, more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.

This paper is merely intended to provide a brief summary of some of the most important facts of M.E. It has been created purely for the benefit of those people without the time, inclination or ability to read each of these far more detailed and lengthy references created by the world’s leading M.E. experts. The original documents used to create this paper are essential additional reading however for any physician (or anyone else) with a real interest in Myalgic Encephalomyelitis. See the full-length text or the References page.

A one-page summary of the facts of M.E.

Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org                            

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’

  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This is always damaged in M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.  This neurological damage has been confirmed in autopsies of M.E. patients.

  • Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease with the ICD code G.93.3.

  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.

  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.

  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.

  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
         However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
         This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
         If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
         M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.

  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than a million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.

Downloads and printer-friendly versions

The full-length text can also be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

The 2 page summarised text (plus notes sections) can be downloaded in a printer friendly Word format, PDF format or as a large-print PDF

To download other papers from this site, see the Document Downloads page.

Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration. Please redistribute this text widely.

Subscribe to the HFME newsletter!

To subscribe just click here

Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95