This video explains why every diagnosis of 'CFS' based on any of the CFS definitions is AL
This video explains why every diagnosis of 'CFS' based on any of the CFS definitions is ALWAYS a misdiagnosis and why the bogus disease category of 'CFS' must be abandoned.
For the benefit of all of the patient groups involved, doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation. As Dr Byron Hyde MD explains:
'Although the authors of these 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. 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.' It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining feature of M.E. nor even an essential symptom of M.E.
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.' Every diagnosis of CFS -- based on any of the CFS definitions -- can only ever be a misdiagnosis.
The bogus disease category of 'CFS' has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various 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 distinction must be made between terminology and definitions.
For more information on all aspects of M.E. see:
http://www.ahummingbirdsguide.com/whatisme.htm
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Added: 1 year ago
Views: 2,912
This video explains why it isn't just people with M.E. who are harmed by the creation of t
This video explains why it isn't just people with M.E. who are harmed by the creation of the bogus disease category of 'CFS' and why it harms everyone misdiagnosed with CFS.
(Note that this is not about mere terminology, it is about the DEFINITIONS of 'CFS' not defining any distinct disease, including M.E., that is why every diagnosis of CFS is a MISdiagnosis.)
Today patients with all sorts of different illnesses are commonly misdiagnosed as having 'CFS.' Under cover of the bogus disease category of CFS, this diverse mix of patients are treated as if they each suffered the exact same specific illness. This is clearly unscientific, and unethical. These patients must be given the opportunity to be diagnosed correctly if they are to have any chance of appropriate treatment or recovery, not given a meaningless 'CFS' misdiagnosis. Patients with M.E. need this same opportunity. Treating this diverse and heterogenous patient group as if their illnesses each shared the same symptoms, aetiology, pathology and response to treatment is inappropriate and highly unlikely to benefit the health and wellbeing of any of the patient groups involved. Treating this 'CFS' group as if they each shared a specific psychological or behavioural illness is also clearly inappropriate. Aside from representing a heterogenous patient group, many (likely the vast majority) of those with the diagnosis are not mentally ill, and do not suffer from behavioural problems. (This includes of course, those patients with authentic M.E.)
Physicians who diagnose 'CFS' in any patient experiencing new onset fatigue without looking and testing for the true cause of the symptoms do their patients -- and themselves -- a great disservice. As Dr Elizabeth Dowsett explains, 'There is no such disease(s) as CFS' (b. [Online]) 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 are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis.
Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won.
For more information on all aspects of M.E. see:
http://www.ahummingbirdsguide.com/whatisme.htm
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Added: 1 year ago
Views: 2,151
This video looks at some of the ways that my life is affected by severe Myalgic Encephalom
This video looks at some of the ways that my life is affected by severe Myalgic Encephalomyelitis.
(None of them involving mere 'fatigue'!)
M.E. is a distinct organic neurological disease which occurs in epidemic and sporadic forms. M.E. can be extremely disabling; 25% of people with M.E. are severely affected and wheelchair-bound, house-bound and/or bedbound - but an additional level of suffering also comes from the (politically and financially motivated) confusion between M.E. and the fictional disease category of 'CFS.' It is important to be aware that Myalgic Encephalomyelitis and 'CFS' are not synonymous terms and should not be used interchangeably, and that 'fatigue' is not a defining feature of M.E. nor even an essential symptom of M.E.
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.' Every diagnosis of CFS -- based on any of the CFS definitions -- can only ever be a misdiagnosis.
The bogus disease category of 'CFS' has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various 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.
For more information on why the bogus disease category of 'CFS' must be abandoned, (along with the use of other vague and misleading umbrella terms such as 'ME/CFS' 'CFS/ME' 'CFIDS' and 'Myalgic Encephalopathy' and others) see: The misdiagnosis of CFS, Why the disease category of 'CFS' must be abandoned and Smoke and Mirrors.
The distinction must be made between terminology and definitions.
For more information on all aspects of M.E. see:
http://www.ahummingbirdsguide.com/whatisme.htm
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Added: 1 year ago
Views: 7,639
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This video explains some of the reasons why everyone with Myalgic Encephalomyelitis needs
This video explains some of the reasons why everyone with Myalgic Encephalomyelitis needs a computer (with access to the internet).
These comments would all no doubt apply equally to people with comparable illnesses to M.E., both politically and medically.
a. Medically: Where a large percentage of patients are completely (or for significant periods of time) housebound and/or bedbound or otherwise limited with communication. (For example; if they are unable to have visitors, use the phone or speak: often/for very long at a time/without significant relapse afterward/without great difficulty or at all; as are many people with M.E.)
b. Politically: Where the vast majority of information produced about the illness is so inaccurate and misleading as to amount to nothing less than propaganda; thanks to the involvement of vested interest groups, including the government (and with full support from government and the media -- with some notable exceptions in the case of the media).
Myalgic Encephalomyelitis is not the same thing as 'CFS' (or ME/CFS, CFS/ME, ME-CFS, CFIDS or Myalgic 'Encephalopathy').
The bogus disease category of 'CFS' has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various 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.
This pretence of ignorance about M.E. -- and that M.E. and CFS are the same -- (particularly by government) has had devastating consequences for people with M.E. Many people with M.E. are subjected to medical abuse (and abuse by misinformed family members), denied even basic medical care and may also be subjected to inappropriate 'treatments' which are at best useless and at worst extremely harmful (people have been left wheelchair or bedbound afterward for years or DECADES, or in cardiac care units) or even fatal for people with M.E. These inappropriate interventions are the actual reason that so many people with M.E. are so severely affected in the first place.
The decades of systemic abuse and neglect of the million or more children and adults with M.E. worldwide has to stop. It is grossly unscientific, unethical and inhuman.
While there IS a lot of good information available about M.E. offline, it is very often only online that people with M.E. (and the parents of children with M.E.) learn of its existence.
For so many people with M.E., the internet is not just a vital source of legitimate political and medical information about their illness; but it often provides their only source of support as well, and/or even their primary (or virtually only) method of communication.
(If I were well enough, I would start a charity aimed at getting second-hand computers to M.E. sufferers who cannot afford them; particularly the housebound and those who cannot communicate for very long any other way.)
For more information on all aspects of M.E. see:
http://www.ahummingbirdsguide.com/whatisme.htm
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Added: 11 months ago
Views: 2,941
Unfortunately, while many advocacy groups started out doing excellent work to improve thin
Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases.
So many of these groups which started out determined to fight against the 'fatigue' and 'CFS' psychobabble, and all the other financially and politically motivated propaganda, and now actively SUPPORTING it.
It is very common to read information produced or supported by these groups which does not contain even a SINGLE facts about M.E., or about anything else. (At best, information on M.E. is mixed in randomly with information on 'CFS' as if they were one and the same).
There are a small number of groups doing some good and worthwhile work for their members. Within that group there are a very small number of groups which really are virtually propaganda free and which do very clearly make the full and proper distinction between M.E. and CFS.
Then there are the worst of the worst, the groups which support all of the worst psychobabble including graded exercise therapy (the most harmful 'treatment' for genuine M.E. there is, and the reason many with M.E. are so severely affected in the first place, or have DIED from M.E.). (These groups are the 'wolves in sheep's clothing'). This includes groups such as: AfME in the UK, the ME/Chronic Fatigue Syndrome Society of Victoria in Australia, and the CFIDS Association of America (CAA), among others.
But the largest number of groups are somewhere in the middle. (These groups are the 'sheep'). They may or may not provide some small percentage of good information occasionally, but unfortunately they combine this with many times more propaganda/fatigue/CFS nonsense, so it's all rather confusing and just pointless in the end, despite any of the good intentions they may have (or claim/seem to have).
But what is so maddening is that these groups are not only not helping people with M.E., they are also harming all those people misdiagnosed with 'CFS' to a similar degree. They help NOBODY.
These comments do not just apply to a few rogue groups, unfortunately. They apply to almost all of them -- all around the world -- and virtually ALL the largest groups in each country. The number of 'advocate' groups -- and individual advocates -- not significantly or overwhelmingly affected is very small.
We must fight to get these groups closed down, or at the very least these groups and individuals must be stopped from incorrectly and misleadingly claiming that they speak for (and provide facts on) authentic Myalgic Encephalomyelitis; as is happening so often now.
These groups must stop hiding behind terms such as 'CFS' and 'ME/CFS' etc. and once and for all state clearly exactly who they are supposedly advocating for. These groups and individuals have caused enough needless extra suffering, abuse, neglect and DEATH. What is happening is a human rights travesty on a massive scale. This has to stop. It has to BE stopped.
For more information on this topic see:
http://www.ahummingbirdsguide.com/topicactivismgroups.htm
For more information on all aspects of M.E. see:
http://www.ahummingbirdsguide.com/whatisme.htm
Acknowledgements: A big thank you to Claire Bassett for all the artwork in this video
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Added: 9 months ago
Views: 2,085
Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease which has
Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3.
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.
M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system -- not a problem of medically unexplained 'chronic fatigue.' Many with M.E. are housebound or bedbound. People with M.E would give anything to instead only be severely 'fatigued' or tired all the time.
For more information, and to see a full symptom list for M.E. (available in Word or PDF format), see:
http://www.ahummingbirdsguide.com/themesymptomlist.htm
Also note that it should not be assumed that because you may have some percentage of the symptoms on the list that you necessarily have M.E. - many of them are common in a variety of other illnesses and it is the pattern of symptoms (and the acute onset type) which enables a M.E. diagnosis to be made, as well as the presence of a number of core characteristics and symptoms (and test results) 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 the unique form of muscle weakness/paralysis seen in M.E. 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 a possibility.
Appropriate tests should be conducted which can help confirm a M.E. diagnosis. If all tests are normal then a diagnosis of M.E. cannot be correct. M.E. is not the same thing as 'CFS.' See:
http://www.ahummingbirdsguide.com/testingforme.htm
Both of these papers are fully referenced and have been compiled using information produced by the world's leading and most experienced M.E. experts.
Acknowledegements: This video is voiced by Lyn Bassett.
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Added: 8 months ago
Views: 3,051
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Many of the articles on Myalgic Encephalomyelitis (M.E.) in the mainstream media (and even
Many of the articles on Myalgic Encephalomyelitis (M.E.) in the mainstream media (and even some of the medical texts on the illness) unequivocally proclaim that not only are there no tests which can be utilised to help confirm a M.E. diagnosis, but that despite extensive testing no objective or quantifiable abnormalities have ever been found in any patients with M.E. whatsoever. Despite their popularity, these are simply absurd claims.
The reality is that objective evidence of quantifiable organic abnormalities in Myalgic Encephalomyelitis patients has existed since the 1950s. Not only are there a series of tests which do allow a M.E. diagnosis to be confirmed, but more than 1000 medical studies have shown a variety of measurable and in some cases extremely severe abnormalities in many different bodily systems of M.E. patients. (M.E. can also be fatal; it can cause multiple organ failure or heart failure). Tests will only all be normal -- as with all illnesses -- if the wrong tests are done, or if those tested do not in fact have M.E. in the first place.
Contrary to much of the propaganda surrounding the illness, it is also not 'fatigue' or 'tiredness' that is the one essential characteristic of M.E. but MEASURABLE central nervous system (CNS) dysfunction (a specific type of damage to the brain). As M.E. expert Dr Byron Hyde M.D. explains: 'The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological CNS changes: SPECT, xenon SPECT, PET, and neuropsychological testing.'
Thus it is these tests which are therefore most critical in the diagnosis of M.E., although various other types of tests are also useful. For more information, and for a full references, see 'Testing for M.E.' at:
http://www.ahummingbirdsguide.com/testingforme.htm
Like it or not, M.E. is every bit as real, as organic and as scientifically verifiable and measurable as all of the plants, flowers, insects, rocks and dirt shown in this video.
M.E. is a distinct, recognisable disease entity that 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. There is just no other illness that is even remotely like M.E.
Although there is as yet no single test which can be used to diagnose M.E. there are (as with Lupus and multiple sclerosis and ovarian cancer and many other illnesses) a series of tests which can confirm a suspected M.E. diagnosis. Virtually every M.E. patient will also have various abnormalities visible on physical exam. If all tests are normal, if specific abnormalities are not seen on certain of these tests (eg. brain scans), then a diagnosis of M.E. cannot be correct
M.E. is not medically unexplained, nor a problem of mere 'fatigue' -- M.E. is not the same thing as 'chronic fatigue' or 'CFS.' The politically and financially motivated bogus disease category of 'CFS' must be abandoned, for the benefit of people with M.E. and all the other different patient groups involved.
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Added: 7 months ago
Views: 1,576
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