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.

M.E. and misdiagnosis (in brief)

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. 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.’

The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. While most M.E. patients are misdiagnosed with 'CFS' it is very important to note that most of those given a 'CFS' diagnosis do NOT have M.E.

M.E. and misdiagnosis

It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms. Myalgic Encephalomyelitis 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.

CFS was created in the 1980s in the US in response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has Myalgic Encephalomyelitis (M.E.), and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’

The bogus disease category of ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance. The distinction must be made between terminology and definitions.

 

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 (or wastebasket diagnosis) 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.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis.  Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.

However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled, with conditions including:

Various post-viral fatigue states/post-viral fatigue syndromes (eg. following glandular fever/mononucleosis, hepatitis, Ross river virus, Q fever, flu, measles, chickenpox, herpes and many other infections)
Fibromyalgia
Candida
Athlete over-training syndrome
‘Burnout’
Multiple chemical sensitivity syndrome (MCSS)
Multiple sclerosis
Thyroid illness
Adrenal insufficiency
Localised and Metastatic malignancies
Brain tumours, including astrocytomas, gliomas
Transverse Myelitis
Myopathic illnesses including: Myasthenia gravis, Mitochondrial myopathies, Post-infectious polymyositis
Vitamin B12 deficiency disorders: Pernicious anaemia, Intentional dietary deprivation, Intestinal disease associated with or independent of M.E.
Rheumatoid illness or lupus (SLE)
Sarcoma
Renal or liver disease
Infectious illnesses including: Toxoplasmosis, AIDS, Lyme disease (Borrelia burgdorferi), Tuberculosis, Brucellosis
Various psychiatric and social psychiatric states including: Anxiety neurosis, Uncomplicated endogenous or reactive depression, Clinical depression, Psychopathic personality disorder, Post-traumatic stress disorder (PTSD), Schizophrenia and other psychiatric disease.

 

Myalgic Encephalomyelitis is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3. Myalgic Encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by 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) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.

M.E. is primarily neurological, but symptoms may also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several of which are unique to the disease. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.

M.E. can occur in both epidemic and sporadic forms and over 60 outbreaks of the illness have been recorded worldwide since 1934. M.E. can be extremely disabling and in some cases the illness is fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

 

The only groups which gain from this ‘CFS’ confusion are insurance companies and other organisations and corporations which have a vested financial interest in how these patients are treated, including the government. Under the cover of ‘CFS’ these vested interest groups have assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years. This is clearly unscientific, and unethical.

The only way forward for M.E. patients and all of the diverse patient groups commonly misdiagnosed with ‘CFS’ (both of which are denied appropriate support, diagnosis and treatment, and may also be subject to serious medical abuse) is that the bogus disease category of ‘CFS’ must be abandoned. As M.E. expert Dr Byron Hyde explains:

Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. 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. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes. M.E. and CFS should be separated as definitions. They are not the same.

M.E. is a clearly defined disease process. CFS by definition has always been a syndrome. Although the authors of these 'CFS' definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable.

Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to 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.

People with M.E. must be diagnosed with Myalgic Encephalomyelitis, and treated for M.E. based on information gained solely from studies involving authentic M.E. patients. People with depression must be diagnosed and treated for depression. People with cancer must be diagnosed with cancer and then treated as appropriate for the type of cancer they have, and so on. Lumping these disparate patient groups together under a vague and meaningless category of ‘fatiguing illnesses’ (or CFS) only hinders each of the patient groups involved in their battle to regain their health. Patients given a misdiagnosis of 'CFS' must not be abused, ridiculed or neglected, as happens so often now. These patients deserve to be correctly diagnosed and treated for the distinct conditions they have, finally.

Physicians who diagnose ‘CFS’ in any patient experiencing fatigue without looking and testing for the true cause of the symptoms (and who choose not to familiarise themselves with the scientific facts about M.E.) do their patients – and themselves – a great disservice. (This misdiagnosis and mistreatment may also create legal consequences for the physician.)

While it is true that most M.E. patients will unfortunately be misdiagnosed with 'CFS' it is extremely important to note 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.

Some of the conditions commonly misdiagnosed as 'CFS' are very well defined and well-known illnesses and very treatable – but only once they have been correctly diagnosed. Some conditions can become very serious or can even be fatal if not correctly diagnosed and managed, including M.E. Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery and this process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.

Relevant video: The misdiagnosis of 'CFS'

More information

To read or download an extended and fully referenced version of the above text, please see the The misdiagnosis of CFS, Why the disease category of 'CFS' must be abandoned and Who benefits from 'CFS' and 'ME/CFS'?  pages.


Additional relevant links:

Extra information: A testable M.E. definition

M.E. is a distinct, recognisable entity; an acute onset organic neurological disease that can be diagnosed relatively early in the course of the disease, providing the physician has some experience with the illness. The Nightingale Definition of M.E. , a testable definition of M.E. finally, now also makes diagnosis easier than ever before even for those with no experience with the illness. For information on how authentic M.E. is characterised and diagnosed see: Testing for Myalgic Encephalomyelitis and What is Myalgic Encephalomyelitis?

The excellent papers by Dr Byron Hyde, a doctor with over 20 years experience with M.E. (and who is also very knowledgeable about 'CFS' and has seen a vast number of patients misdiagnosed with 'CFS' ) and regarded by many as today's leading M.E. expert are also essential extra reading, see: 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 and The Complexities of Diagnosis and his newest paper: The Nightingale Definition of M.E.

Extra information: Correct M.E. diagnosis and 'fatigue'

Just as some M.E. sufferers will experience other minor and non-essential symptoms such as vomiting or night sweats some of the time, but others will not, the same is true of fatigue. The diagnosis of M.E. is determined upon the presence of certain neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms (and so on) – the presence or absence of mere ‘fatigue’ is irrelevant. In addition to these other (far more serious) symptoms, some M.E. sufferers may also suffer with mild, moderate or severe fatigue some of the time, while others will not.

Thus the symptom of fatigue is not an essential symptom of M.E. and does not define M.E., although the symptom of fatigue is certainly essential to qualify for a (mis)diagnosis of ‘CFS.’

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