Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.
It can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.
M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’
What defines M.E. is a specific type of acquired damage to the brain (the central nervous system) caused by a virus; an enterovirus.
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 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.
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. In some cases Myalgic Encephalomyelitis is fatal.
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. If all tests are normal, then a person does not have M.E.
M.E. is an infectious neurological disease which 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.
The vast majority of those diagnosed with "CFS' do not have M.E. although many with M.E. will be given a 'CFS' non-diagnosis, unfortunately. All the 'CFS' and 'ME/CFS' hype out there helps nobody. For more information both The misdiagnosis/non-diagnosis of CFS and Where to after a 'CFS' (mis)diagnosis? papers on HFME are vital reading.
The majority of articles in the media on this topic rarely contain even one legitimate fact about M.E.
The majority of patients with M.E. do not have access to even basic appropriate medical care or the appropriate welfare support.
What treatments M.E. patients will be given is currently decided by research involving an entirely different and vaguely defined patient group made up of non-M.E. patients.
What is happening to people with M.E. is a gross violation of basic human rights. It amounts to legalised medical torture and abuse of some of our most vulnerable members of society.
It is inhuman and must be stopped.
M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.
Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.
M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis or non-diagnosis. A wastebasket diagnosis.
The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.
Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.
The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.
Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.
The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.
Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.
The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism. Knowldge is power!
The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.
The Hummingbirds' Foundation for Myalgic Encephalomyelitis are an international M.E. charity.
The group was founded by me (Jodi Bassett), the author of the Health, Healing & Hummingbirds site, in 2009.
Most HFME contributors are also severely disabled. The HFME contributors feel, however, that they have no choice but to try to do what they can for M.E. advocacy, as there simply is very nearly almost nobody else advocating for M.E. patients currently.
The HFME is run by and for M.E. patients, and also aims to help those non-M.E. patients that are misdiagnosed with 'CFS.' (Every diagnosis of 'CFS' is a non-diagnosis or mis-diagnosis.)
The HFME site explains why:
The site also includes:
HFME's information is referenced and summarises the work of genuine experts in these fields.
In addition to our websites and videos there are also several HFME books now available, featuring Foreword texts by distinguished M.E. expert Dr Byron Hyde.
Most websites and groups which deal with these topics are heavily influenced by the misinformation promoted by vested interest groups. They are unreliable, of poor quality and do not serve patients' interests.
Patients with M.E. and all those given a non-diagnosis or wastebasket diagnosis of 'CFS' that do not have M.E. have gotten a raw deal for the last 20 years.
Things are worsening as the years pass, rather than improving. Real advocacy is vital and starts with accurate information.
Half truth is no truth at all.Get the facts at HFME!
Note that the aim of this site is to provide a starting point for health and healing research for ill people; especially very overwhelmed and disabled ill people. This site provides recommendations, summaries and reviews of books but is not meant to be a replacement for actually reading some of these wonderful health books if the reader is at all well enough to do so. (Plus getting individualised advice from a doctor that is also an orthomolecular medicine expert if possible). There is no substitute for reading as many of these books as you can. The HHH site can only really hint at their full brilliance. The amount of insight, scientific references, logic, intelligence, compassion and experience in the recommended books will most likely amaze you. HHH aims to encourage people to do their own reading and learning, and to always make up their own minds. All content copyright Jodi Bassett 2006 - 2014.