The comprehensive M.E. symptom list. A comprehensive M.E. symptom list based on research by the world's leading M.E. experts.
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Copyright © Jodi Bassett 2004. This version updated June 2012. From www.hfme.org
Myalgic Encephalomyelitis (M.E.) has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disease. It can occur in both epidemic and sporadic forms.
M.E. is not medically unexplained or untestable and is not the same thing as the wastebasket disease category of 'CFS' (or 'ME/CFS'). 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. What defines M.E. is a specific type of viral damage to the brain.
M.E. is a multi system disease which is characterised by post encephalitic damage to the brain stem; a nerve centre which controls all vital bodily functions - this is always damaged in M.E., hence the name M.E. 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. M.E. represents a major attack on the CNS by the chronic effects of a viral infection which targets the brain: an enterovirus.
M.E. has a sudden/acute onset that is often very dramatic. Many patients can tell you not just the day they became ill but the hour. M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. M.E. is a loss of normal internal homeostasis. M.E. is secondarily a vascular disease and the vascular and cardiac dysfunctions seen in M.E. are also a major cause of much of the disability associated with M.E. More than 60 symptoms have been authentically documented in M.E.
M.E. is associated with signs and symptoms including (but not limited to):
Neurological signs and symptoms:
Vascular and cardiovascular signs and symptoms:
Muscular signs and symptoms:
Cognitive signs and symptoms:
Other signs and symptoms:
What characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. It is unique in a number of ways and must be present for a correct diagnosis of M.E. to be made, and includes the following:
30% of M.E. patients are housebound and/or bedbound and are severely limited with even basic movement and communication. Cognitive disability can be very pronounced in M.E., just as much as can physical disability.
This information is based upon an enormous body of clinical information and research. Although M.E. can cause many different symptoms the major features of epidemic and sporadic M.E. are distinct and almost identical from one patient to the next. M.E. is a severely disabling, distinct, easily recognisable and testable disease entity.
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: What is M.E.? or the References page. A partial reference list follows:
“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. The HFME 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.
Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org
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.
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