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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I am in the middle of writing my letter for 2 local papers and possibly 1 tv show (get them to wear blue ribbons!) and really want to try to explain that ME and CFS are not the same thing. But will this only confuse the community?
I am in the middle of writing my letter for 2 local papers and possibly 1 tv show (get them to wear blue ribbons!) and really want to try to explain that ME and CFS are not the same thing. But will this only confuse the community? Will they die of boredom before even finishing my letter? Is there a simple way to do it?.
It really irks me that ME is called CFS, when one is a disease, the other a syndrome.
As far as I know, the difference between ME and CFS is which country you live in.
What is the difference?
ME has always been around and was a studied disease eg Melvin Ramsey was studying it from the 1955 outbreak... Dr Byron Hyde is a more recent ME expert. His site is at http://www.nightingale.ca/index.php?target=whatis
CFS was something made up in in the 1980s by American government (CDC?) when a syndrome was formed by putting together various illnesses.
ME is a neurological disease which can cause epidemics. CFS isnt necessarily neurological.
..............
"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.
It 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.
What defines M.E. is a specific type of acquired damage to the brain (the central nervous system).
Myalgic Encephalomyelitis is an acutely acquired neurological disease initiated by a virus infection 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').
The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.
Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. "
the above quote is from a ME site http://www.ahummingbirdsguide.com/
http://www.hfme.org/meoverview.htm is a good page to read if you want to understand ME from CFS better.
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf (is Bryon Ramseys ME definition)
Another term that can be used in place of CFS is CFIDS. CFIDS is also on the CDC page as a disease. No idea how is compares to CFS when it comes to diagnostic criteria, but at least it sounds more serious.