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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 diagnosed with '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.
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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.
M.E. 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.'
M.E. is an acute (sudden) onset neurological disease initiated by a virus infection (an enterovirus) 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., hence the name 'Myalgic Encephalomyelitis.'
M.E. has existed for centuries. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.
There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. M.E. can be at least as disabling MS or polio, and many other serious diseases. M.E. is a chronic/lifelong disease that in some cases is fatal.
M.E. is a testable and scientifically measurable disease with a number of unique features. It is not difficult to diagnose, even within just a few weeks of onset, using a series of objective tests.
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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.
The hearts of M.E. patients barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up an astounding 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 (causing severe relapse or even death) and strict individual limits MUST be observed.
M.E. patients who are able to rest appropriately and avoid severe or repeated overexertion have repeatedly been shown to have the most positive long-term prognosis.
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. A watebasket 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.
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 book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.
"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."
Click here to purchase a paperback copy or digital download of this book.
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. For more information see the References page.
Most of the HFME committee is severely disabled. The founding members of the HFME 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 misdiagnosed with 'CFS.' For more information on HFME please see the About HFME page.