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.
'Caring For The M.E. Patient' by Jodi Bassett
This new book provides essential information for anyone who knows, loves or provides care for someone with M.E. - sourced from the world's leading M.E. experts.
The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by one of the world's leading M.E. experts, 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."
From the back cover:
For friends, family and partners: Your friend or family member may be just as ill and disabled as someone with M.S., yet have almost no appropriate social support at all. They may also be dealing with serious medical neglect or even overt abuse. This happens due to the deliberate, financially and politically motivated confusion between the distinct and measurable neurological disease M.E. and the vague fatigue-based wastebasket diagnosis of 'CFS'. These are two entirely different entities. Find out what is really going on and why.
Learning the facts is not time-consuming or complicated, and may improve both the patient's quality of life, and your relationship with them. You can help the person in your life that has M.E. Supporting your ill friend or family member more fully by being aware of the basic facts of M.E. could make all the difference in the world to them. This book shows you how.
For medical professionals: Patients with M.E. have some care needs which are common to a variety of other diseases, and others that are unique and with which hospital staff, doctors or carers may be wholly unfamiliar. If you are providing care for someone with M.E., you will find knowledge of some of the basic M.E. facts vital in order to avoid additional unnecessary suffering and disability.
Taking a small amount of time to learn the facts about the disease can make an enormous difference to the M.E. patient's quality of life and prognosis. It could even be life-saving. Providing appropriate care and support for the M.E. patient could make all the difference in the world to them. This book shows you how.
Where to buy the book!
This book provides essential information for anyone who knows, loves or provides care for someone with M.E. - and also makes a very suitable primer on M.E. for the patient with M.E. or anyone that just wnats to learn more about M.E. and why M.E. is not at all the same as 'CFS.'
The book is available in several different editions:
- Paperback
- Large-print paperback
- Hardcover
- eBook (ePub)
- eBook (PDF)
- eBook (Kindle)
Click here to purchase this book in paperback, large print paperback or hardcover editions or as an eBook digital download from Lulu.
Click here to purchase the Kindle eBook digital download from Amazon.com.
Click here to purchase the Kindle eBook digital download from Amazon.co.uk.
The paperback edition of the book will be available from Amazon.com, Amazon.co.uk and other booksellers in the near future; most likely November - December 2011.
Note: Lulu is a US company that ships books all around the world. When ordering books from Lulu, paperback books and hardcover books are best purchased in separate orders as the post cost becomes significantly higher than usual when an order combines both paperback and hardcover books. (This may possibly be due to the fact that paperback and hardcover books are produced by different Lulu affiliated printing companies.)
The HFME press release for the first HFME book on M.E.
The Suffering of Hidden Disease: A New Book to Help Patients, Families and Doctors
'This month sees the release of a book which discusses the
enormous suffering of thousands of patients in Australia and many more
worldwide. The book describes how people's lives are made worse by medical
ignorance and abuse which leaves them with lives of quiet desperation and
immense suffering.'
What is M.E.?
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.
Why are M.E. patients so severely and uniquely disabled?
|
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. |
Why do people with M.E. desperately need your help?
|
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 inhumane and must be stopped. |
What is 'CFS'? Why was this bogus disease category created?
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.
About HFME
The easiest way to start learning more about M.E. is to click on the links at the top of the navbar (on the left) to read brief overviews of many of the issues discussed on this site.
You could also
start by reading the summary on this page (the homepage) or reading the HFME What is M.E.? paper.