This book is essential reading for doctors and patients alike, and those interested in M.E. as well as those interested in 'CFS' or that have been misdiagnosed as 'CFS.'
(As this book explains, there is no such distinct disease as 'CFS' - and every diagnosis of 'CFS' is a MISdiagnosis.)
The Nightingale Definition of Myalgic Encephalomyelitis paper in particular cannot be recommended highly enough.
Finally this is a modern and TESTABLE definition of Myalgic Encephalomyelitis, created by the world's leading and most experienced M.E. expert, Dr Byron Hyde. This is NOT a redefinition of CFS but is instead a pure M.E. definition.
It draws on the long history of M.E., collates the evidence from each of the world's leading M.E. experts (past and present) and combines this with details of the most modern medical tests. This definition also rightly gives no importance at all to the bogus notion of mere `fatigue' having any importance in the diagnosis/definition - unlike each of the `CFS' definitions, including unfortunately the Canadian `ME/CFS' definition which just mixes in a few M.E. facts with what is still primarily a `CFS' redefinition.
Dr Hyde explains that:
"I believe it essential to define clearly Myalgic Encephalomyelitis, returning the definition to its clinical and historic roots and complementing this information with the certitude of modern scientific testing. That is what the Nightingale definition of M.E. sets out to do. But let me first ask you a very important question.
What is the purpose of any medical definition? What is the purpose of any disease definition if it is not to allow the physician to rapidly and accurately diagnose a specific illness in order to attempt to effectively treat the patient before the illness becomes chronic or to call in the appropriate specialists? Our definition solves this problem."
"There is a third purpose for any disease definition. That is to clearly define the disease so that various physicians and researchers can clearly understand that they are talking about the same illness spectrum and so launch research into what will become an effective treatment. Our definition gives a clear baseline for investigation.
The Nightingale definition is based upon the following two criteria: (a) The excellent scientific and clinical work of respected physicians and scientists who investigated the various M.E. epidemics. (b) The results of modern scientific testing techniques and the knowledge accruing from examining thousands of M.E. patients using these and more historical techniques. The proposed M.E. definition is designed to improve early diagnosis and treatment for the tens of thousands of patients stricken with M.E. It is not a new definition of CFS nor should it be conceived as a rewording of any previous CFS definition.
The definition is set out in such a fashion as to enable the physician to make a bedside or office clinical diagnosis and then to scientifically test the hypothesis. This will allow the physician an early diagnostic understanding of this complex illness and a scientific and technological method to investigate and confirm the diagnosis. It is well known by all serious physicians that in order to assist any patient in a partial or full recovery the illness must be (a) prevented from occurring by either immunization or understanding and avoiding the causes, (b) or diagnosed and treated immediately following onset. The Nightingale Definition assists the physician both in diagnosis and early treatment.
What follows is the primary M.E. definition for adults. I believe it essential to define clearly Myalgic Encephalomyelitis. That is what the Nightingale definition of M.E. sets out to do........
To various degrees many if not all of the above historic findings have been observed and discussed by Doctors Alexander Gilliam, Bjorn Sigurdsson, Alberto Marinacci, Andrew Lachlan Wallis, A Melvin Ramsay (Elizabeth Dowsett), John Richardson, Elizabeth Bell, Alexis Shelokov, David C Poskanzer, W.H. Lyle, Sir E. Donald Acheson, Louis Leon-Sotomayor, J. Gordon Parish and many others."
'The complexities of diagnosis' is also very, very good overall and is also recommended.
Buy this book, and an extra copy for your doctor.
We need a hundred Dr Hyde's! Things are getting worse and worse for M.E. patients worldwide, sadly.
Jodi Bassett, severe M.E. patient and founder of the Hummingbirds' Foundation for Myalgic Encephalomyelitis