A Hummingbirds' Guide to M.E.

Information on the neurological disease Myalgic Encephalomyelitis

The M.E. symptom list (summary)

The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List. A comprehensive M.E. symptom list based on research by the world's leading M.E. experts.

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Before reading the list, please note:

This text is NOT a diagnostic tool and should not be used as such. It should not be assumed that because you may have some of the symptoms on the list that you necessarily have M.E. – many of them are common in a variety of other disorders and it is the pattern of symptoms which enables a M.E. diagnosis to be made, as well as the presence of a number of core characteristics and symptoms which are always present in the illness, and without which a diagnosis of M.E. should never be made. (For example, damage to the brain, the CNS, which is visible on brain scans, and so on.)

Even having a large number or percentage of the symptoms on this list does NOT necessarily mean a M.E. diagnosis is likely or even possible. M.E. cannot be accurately diagnosed merely on the presence of a certain percentage of possible M.E. symptoms. Tests must also be involved in the diagnosis of M.E. See: Testing for M.E. for more information on the diagnosis of M.E.

For those with M.E. reading this list, never assume that every symptom you have is 'just' M.E. as having M.E. does not mean you are immune from developing other illnesses as well unfortunately. Some of these other illnesses may also be far more treatable than M.E. Cardiac problems in particular should always be investigated, as should lymph node pain (among many other symptoms). If you can, make sure you get every new symptom checked out by your doctor.

Note that the symptoms are listed in no particular order, and that nobody will get every symptom. Also note that this is not a pure symptom list and some additional information (signs of the illness, causes of some of the symptoms, recent research findings etc.) has also been included. This list does not contain any additional anecdotal symptoms.

Note: To read a description of the symptoms of M.E. which combines the available research with a personal description of the illness, and which describes more than 50 symptoms of the illness in detail, see the new paper: What it feels like to have Myalgic Encephalomyelitis: A personal M.E. symptom list and description of M.E.

The M.E. symptom list: Summary

Copyright © by Jodi Bassett 2004 on www.ahummingbirdsguide.com
This version updated March 2009

Because of the vast amount of inaccurate information being propagated about Myalgic Encephalomyelitis by various vested interest groups (helped immeasurably by the creation of the bogus disease category of ‘CFS’ as well as a number of vague and misleading umbrella terms such as ‘ME/CFS’ ‘CFS/ME’ ‘CFIDS’ and Myalgic ‘Encephalopathy’ etc.) it is important to explain briefly what are the myths about M.E., and the symptoms of M.E.

M.E. is not synonymous with being tired all the time. If a person is fatigued for an extended period of time this does not mean they are having a ‘bout’ of M.E. To suggest such a thing is no less absurd than to say that prolonged fatigue means a person is having a ‘bout’ of multiple sclerosis or Parkinson’s disease. Fatigue is a symptom of many different illnesses – but it is not a defining symptom of M.E., or an essential symptom of M.E.

There are a number of post-viral fatigue states or fatigue syndromes which may follow common infections such as mononucleosis/glandular fever, hepatitis, Q fever, Ross river virus and so on. M.E. is an entirely different condition to these self-limiting fatigue syndromes however, the science is very clear on this point. M.E. is also not the same condition as Lyme disease, athletes over-training syndrome, burnout, depression, somatisation disorder, candida, multiple chemical sensitivity syndrome or Fibromyalgia, or indeed any other illness. M.E. is a debilitating neurological illness which has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disease. The illness can occur in both epidemic and sporadic forms and more than 60 outbreaks of M.E. have been recorded worldwide since 1934.

What defines M.E. is not ‘chronic fatigue’ but a specific type of damage to the brain. Myalgic encephalomyelitis is an acutely acquired illness initiated by a virus infection with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. Central nervous system (CNS) dysfunction, and in particular, inconsistent CNS function is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.

This diffuse brain injury is initiated by a virus infection which targets the brain; M.E. represents a major attack on the CNS by the chronic effects of a viral infection. Myalgic Encephalomyelitis is a loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions. It is a loss of normal internal homeostasis.

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. The world’s leading M.E. experts (namely Ramsay, Richardson, Dowsett and Hyde) have all indicated that M.E. is caused by an enterovirus, the same type of virus which causes polio. The evidence which exists to support the concept of M.E. as an enteroviral disease is compelling. (See: The outbreaks (and infectious nature) of M.E. for more information.)

M.E. is a distinct, recognisable disease entity which contrary to popular belief 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 illness. Although there is (as yet) no single test which can be used to diagnose M.E. there are a series of tests which can confirm a suspected M.E. diagnosis. If all tests are normal, then a diagnosis of M.E. cannot be correct. (See Testing for Myalgic Encephalomyelitis for more information.)

Individual symptoms of Myalgic Encephalomyelitis include:

Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances.

Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E.

What characterises M.E. every bit as much as the individual symptoms however is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the CNS) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made. The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:

  1. People with M.E. are unable to maintain their pre-illness activity levels. This is an acute (sudden) change. M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.
  2. People with M.E. are limited in how physically active they can be but they are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.
  3. When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
  4. The level of physical activity, cognitive exertion, sensory input or orthostatic stress needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.
  5. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
  6. The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours (or more) later.
  7. The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
  8. The activity limits of M.E. are not short term: a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.
  9. The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion; there is also a base level of illness which can be quite severe even at rest.
  10. Repeated overexertion can harm the patient’s chances for future improvement in M.E. M.E. patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.
  11. Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness; this is not the case for the very severely affected.

This is not simply theory, but is based upon an enormous body of clinical information and research. Confirmation of this hypothesis is supported by electrical tests of muscle and brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. M.E. is neither ‘mysterious’ nor ‘medically unexplained.

M.E. affects all races and socio-economic groups and has been diagnosed all over the world with a similar strike rate to multiple sclerosis. Children as young as five can get M.E., as well as adults of all ages.

M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Polio. 25% of M.E. sufferers are severely affected and housebound and/or bedbound. In some cases Myalgic Encephalomyelitis can also be progressive, or fatal.

M.E. is an infectious neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system – not a problem of unexplained ‘fatigue.’


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References (and recommended additional reading) list

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 – by a well-read layperson 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. A partial reference list follows. For more information see the full-length version of this text or the References page.

  • Dowsett, Elizabeth MBChB. 1999a, Redefinitions of ME [Online], Available: http://www.ahummingbirdsguide.com/wdowsett.htm
  • Dowsett, Elizabeth MBChB. 1999b, Research into ME 1988 - 1998 Too much PHILOSOPHY and too little BASIC SCIENCE!, [Online], Available: http://www.ahummingbirdsguide.com/wdowsett.htm
  • Dowsett, Elizabeth MBChB. n.d.a, Differences between ME and CFS, [Online], Available: http://www.ahummingbirdsguide.com/wdowsett.htm
  • Dowsett E., Ramsay A.M., McCartney A.R., & Bell E.J. 1990, ‘Myalgic Encephalomyelitis: A persistent Enteroviral Infection?' in The Clinical and Scientific Basis of Myalgic Encephalomyelitis, B. Hyde (ed.), The Nightingale Foundation, Ottawa, pp. 285-291.
  • Hooper, M. Marshall E.P. & Williams, M. 2001, What is ME? What is CFS? Information for Clinicians and Lawyers, [Online], Available: http://www.ahummingbirdsguide.com/wmarwillhoopwimewicfs.htm
  • Hyde, Byron M.D. 2006, A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome [Online], Available: http://www.ahummingbirdsguide.com/whydepapers.htm#121947643
  • Hyde, Byron M.D. 2007, The Nightingale Definition of Myalgic Encephalomyelitis [Online], Available: http://www.ahummingbirdsguide.com/whydepapers.htm#121947255
  • Hyde, Byron M.D. & Anil Jain M.D. 1992, Clinical Observations of Central Nervous System Dysfunction in Post Infectious, Acute Onset M.E. in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa, pp. 38-65.
  • Hyde, Byron M.D., Bastien S Ph.D. & Anil Jain M.D. 1992, General Information, Post Infectious, Acute Onset M.E. in Hyde, Byron M.D. (ed) 1992, The Clinical and Scientific Basis of Myalgic Encephalomyelitis, Nightingale Research Foundation, Ottawa, pp. 25-37.

"People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.’ Professor Hooper 2003


‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance’ Dr Byron Hyde 2006

 

‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything’ Dr Byron Hyde 2003

 

Disclaimer: The descriptions of symptoms in this paper are not intended to form a definitive definition of M.E. This paper is not intended for use as a diagnostic tool. A Hummingbirds Guide to M.E. does not dispense medical advice or recommend treatment, and assumes no responsibility for treatments undertaken by visitors to the site. It is a resource providing information for education, research and advocacy only. Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.

A one-page summary of the facts of Myalgic Encephalomyelitis

Copyright © by Jodi Bassett January 2009 on www.ahummingbirdsguide.com
This version updated March 2009

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and polio (poliomyelitis). 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. (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 Myalgic Encephalomyelitis? Extra extended version. Permission is given for this unedited document to be freely redistributed, please redistribute this text widely.