Note: This poll was taken on internet in the spring of 1998.
Let's Change The Name!!!
This is an informal poll, lasting about six weeks, to change the name of the disease known formally in the United States as chronic fatigue syndrome. It has been known for four decades in the U.K. and elsewhere as myalgic encephalomyelitis (M.E.), and in the U.S. is also called CFIDS for Chronic Fatigue and Immune Dysfunction Syndrome.The names CFS and CFIDS do not describe the complexity and severity of this serious disease and encourage disparaging remarks by others - as well as (we believe) influence the small sum of money allocated toward research of a disease that impacts on 400,000 U.S. citizens alone.
WE, the patients who suffer from this disease, WANT THE NAME CHANGED!!
As a first step, nominations were sent from April 1 through April 10 [1998]. Next, posters voted for finalists through April 20,[1998,] cutting the list down to the nine names with the highest vote count. From April 21 to April 30,[1998,] we chose the final name from the last nine. Or final names. Depending on your point of view.
It's MIDS or M.E. - Take your Pick!
The results could be interpreted two ways. The top three names were:MIDS (Multiple Immune Dysfunction Syndrome) - 41Myalgic Encephalomyelitis is the term that has been used in the U.K. since the mid-1950s. There has been an M.E. Association for patient support since the late 1960s. While there has been a push to change the name to CFS, patients are resisting this. Hence, some of the votes for Myalgic Encephalomyelitis represent patients who DON'T want to change the name: they want to keep the name they have been using all along, M.E.
Myalgic Encephalopathy - 33
Myalgic Encephalomyelitis - 34
The reason that Myalgic Encephalomyelitis was dropped as a contender in the conference that resulted in "CFS" was that there was no "itis" - no sign of inflammation in the brain. Some patients thought that if they changed the name to Encephalopathy, it would be accurate (Dr. Komaroff's work, among others, clearly indicates significant physical abnormalities in the brain) - and we could still use the initials M.E. that are still commonly used in the U.K. and Canada. This seemed the best of both worlds - respectful of the international name, but more accurate.
Currently MIDS, for Multiple Immune Dysfunction Syndrome, is popular among a number of patients on-line. And it was the clear vote winner. On the other hand, the initials M.E. (whether "itis" or "pathy") (plus the one patient who voted simply for "M.E.") won 68 votes, considerably more than MIDS' 41.
Take your pick, then - the winner is MIDS or M.E.
The point, however, is that patients view the name Chronic Fatigue Syndrome as a symbol of their impotence and voicelessness with regard to the agencies that chose that name, and a symbol for the disrespect with which CFS patients and the disease are held by the general public. That is why they want the name changed, and will continue to.
All the Final Votes (209 voters)
MIDS (Multiple Immune Dysfunction Syndrome) - 41Total M.E. names - 68
Mylagic Encephalopathy - 33
Myalgic Encephalomyelitis - 34
M.E. - 1
CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) - 19
Ramsay's Disease - 20
CIDS (Chronic Immune Dysfunction Syndrome) - 18
Gilliam Ramsay Disease - 17
Multiple Sclerosis Type B - 16
Ramsay's Encephalopathy - 7
No change - 3
Results of Votes for Finalists
Voters were permitted to vote for three names and rank them 1, 2, and 3. The top-ranked name received 3 points, the 2nd ranked 2 points, and the 3rd ranked 1 point. This is a way of getting at acceptable alternatives. The top five names were Myalgic Encephalopathy (86), MIDS - Multiple Immune Dysfunction Syndrome (71), Myalgic Encephalomyelitis (63), CIDS -- Chronic Immune Dysfunction Syndrome (38), and CFIDS (35). Since four of these came from only two categories, I added the other two names which received more than 30 points. Voting on the finalists took place from April 11 to April 20.Myalgic Encephalomyelitis (63)
Myalgic Encephalopathy (71)
MIDS - Multiple Immune Dysfunction Syndrome (71)
CIDS - Chronic Immune Dysfunction Syndrome (38)
Ramsay's Encephalopathy (31)
Ramsay's Disease (32)
Gilliam-Ramsay Disease (31)
CFIDS (35)
Multiple Sclerosis Type B (31)
- M.E. in total - 200
- M.E. - 14
Myalgic Encephalopathy -- 86
Myalgic Encephalomyelitis -- 63
CME - Chronic Myalgic Encephalopathy - 16
Myalgic Encephalomyeloneuropathy - 14
Myalgic Encephalomyopathy - 7 - All "IDS" names - 151
- MIDS - Multiple Immune Dysfunction Syndrome -- 71
CIDS - Chronic Immune Dysfunction Syndrome -- 38
IDS - Immune Dysfunction Syndrome -- 13
ADS - Autoimmune Dysfunction Syndrome -- 9
MMIDS - Mixed Multiple Immune Dysfunction Syndrome -- 8
PIDS - Poly-symptomatic Immune Dysfunction Syndrome -- 5
CIAS - Chronic Immune Activation Syndrome -- 5
IDD - Immune Dysfunction Disease -- 2 - Ramsay names - 105
- Ramsay's Disease - 32
Ramsay's Encephalopathy - 31
Gillliam-Ramsay Disease - 31
Ramsay's Syndrome - 9
Ramsay's Acquired Encephalopathy -- 3 - Some combination of existing names -- 65
- CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome -- 35
CFS - Chronic Fatigue Syndrome -- 20
CFIDS/M.E. - 3
FM/CFS - 1
Fibromyalgia - 1
CFID/M.E. - 1
Fibromyalgia/CFS - 1
ME/CFIDS - 2
ME/CFIDS/FMS - 1
Multiple Sclerosis Type B - 31
NEID - Neurological, Endorine, Immunological Disorder -- 15
NEDS - Neuro-Endocrine Dysfunction Syndrome -- 10
NEIDS - Neurological, Endocrine, Immunological Disorder Syndrome -- 1
SEEDS - Systemic Encephalopathic Enteroviral Disease Syndrome -- 1
NEICANS disruption - Neurological, Endocrine, Immunological,
Cardiological Autonomic Nervous System Disruption -- 7
Neural Encephalomyelopathy - 4
Systemic Metabolic Encephalopathy - 1
Neural Encephalopathy - 1
Brainstem Encephalopathy - 1
Bell-Cheney-Peterson Syndrome - 11
Bell-Cheney-Peterson Disease - 6
Cheney-Peterson Disease - 7
Osler's Disease - 9
Skye's Disease - 7
Murphy's Syndrome - 6
Nightingale Syndrome -- 5
Bell Syndrome - 3
Murphy's Acquired Encephalopathy - 3
Post-Viral Syndrome - 3
Living Death - 2
ABHS (Achy-Breaky-Heart Syndrome)- 1
All Names Originally Nominated for Voting
- M.E. and variations
- M.E. -- Myalgic Encephalomyelitis
M.E. -- Myalgic Encephalopathy
M.E. -- Myalgic Encephalomyopathy
M.E. - Myalgic Encephalomyeloneuropathy
C.M.E. -- Chronic Myalgic Encephalomyelopathy
N.E. -- Neural encephalopathy
B.E. -- Brainstem Encephalopathy
R.E. -- Ramsay's Encephalopathy
S.M.E. -- Systemic Metabolic Encephalopathy (S.M.E.) - Variations on CFIDS
- CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome
MIDS -- Multiple Immune Dysfunction Syndrome
MMIDS -- Mixed Multiple Immune Dysfunction Syndrome
CIDS - Chronic Immune Dysfunction Syndrome
CIAS - Chronic Immune Activation Syndrome
PIDS -- poly-symptomatic immune dysfunction syndrome
IDS -- Immune Dysfunction Syndrome
IDD -- Immune Dysfunction Disease
ADS -- Autoimmune Dysfunction Syndrome
- Familiar Names
- ME/CFIDS
CFS - Chronic Fatigue Syndrome
Fibromyalgia
ME/CFIDS/FMS - Ramsay's Disease and variations
- RD - Ramsay's Disease
RS - Ramsay's Syndrome
RE - Ramsay's Encephalopathy
RAE -- Ramsays acquired encephalopathy - Other Names after People (Eponyms)
- Cheney-Peterson Syndrome.
Bell-Cheney-Peterson Syndrome
Skye's Disease (after Sky Daylor, the 14-year-old who took her life
when classmates teased her about having CFS)
Nightingale Syndrome (after Florence Nightingale)
James Disease (after Alice James)
Bell Syndrome
David Bell Syndrome
Gilliam-Ramsay's Disease
Osler's Disease - Variations on Suhadolnik's Disorder
- SD - Suhadolnik's Disorder
SD - Suhadolnik's Disease
RDS - RNaseL Deficiency Syndrome
RDD - RNaseL Deficiency Disorder - Virus-Based Names
- PVS -- Post-Viral Syndrome
Chronic Mononucleosis
SSD -- Systemic Stealthviral Disease
SIEDS -- Systemic Ideopathic Enteroviral Disease Syndome
SEEDS -- Sytemic Encephalopathic Enteroviral Disease Syndrome
VC -- Viral-Induced Cardiopathy - Neuro-cardiological names
- NCA -- Neurocirculatory Asthenia
IV -- Infectious Venulitis
LBV Disease -- Low Blood Volume Disease - Combination Platters
- INES -- Immune and Neuro-Endocrine syndrome
NEDS -- Neuro-Endocrine Dysfunction Syndrome
NEID - Neurological, Endocrine, Immunological Disorder
NEIDS - Neurological, Endocrine, Immunological Disorder Syndrome
NEICANS Dysruption - Neurological, Endocrine, Immunological,
Cardiological Autonomic Nervous System Dysruption - NB -- Neurotransmitter Brownout
- Environmentally Induced Neurotransmitter Brownout
Microbiologically Induced Neurotransmitter Brownout
Psychologically Induced Neurotransmitter Brownout - Variety Pack
- Latin for "Living Death"
Cerebropathy; any disease of the brain
Dysenergism -- a condition of painful/disrupted energy
Multiple Sclerosis Type B
For Your Amusement (and mine)
Murphy's Disease or Murphy's Syndrome as in Murphy's Law.As in "if anything can go wrong it will go wrong".
The Disease formerly known as CFS
The Disease that dare not speak its name
The "I'm so sick of being sick disease".
ABHS (Achy Breaky Heart Syndrome).
Painitis? Pronounced Pain itice
Musclewarp?
Tendonwarp?
or the ever popular dd itis
CRAPSS - Chronic Relapsing and Persistent Sick Syndrome
DAMN - Dys Autonomic Myalgic Neuroencephalopathy
Reasons for Various Names
Here are the reasons posters sent in for various names:- M.E. for Myalgic Encephalomyelitis or Myalgic Encephalopathy
- The disease has been called M.E., or Myalgic Encephalomyelitis,
in the U.K. since 1956 - over four decades. When the U.S. Centers for
Disease Control first studied the disease in an outbreak at Lake Tahoe,
they did not consider that it could be the same as M.E. But by the time
they gave it the name Chronic Fatigue Syndrome, it was well known that
this was the disease called M.E. in the U.K., Canada, and other parts of
the world. Hence, CFS itself represents the name change, and those
who wish to call it M.E. for Myalgic Encephalomyelitis are merely asking
that the name be retained.
Some doctors assert that the problem with M.E. is that there is no
apparent brain inflammation (the "itis" in encephalomyelitis).
Consequently, another suggestion is to keep the initials M.E., but
change the last word to "encephalopathy", which means disease or
dysfunction of the brain.
M.E. Please!
I prefer Myalgic Encephalomyelitis as there is so much
published in terms of INTERNATIONAL RESEARCH, that
changing the name to anything else would MAKE it harder to track
previous works of scientific merit in this disease. We already have
some ten years of international research into ME. - it would be a
shame to bury it with a name change.
Seems the American government has succeeded quite nicely in this
area, and I sure would be against assisting "them" in that project
in any way - including the name game!
M.E. for Myalgic Encephlomyelitis, not Myalgic Encephalopathy
"Encephalopathy "suffers from the fact that the word is differently defined
in different countries. Also, if Bell and Streeten are right, CFS is not an
encephalopathy no matter how the word is defined.
Myalgic Encepholopathy is my first choice, simply because it is the oldest
and previously used name with a slight correction
from "itis" to "opathy".
M.E. - Myalgic Encephalomyeloneuropathy -
after all the neural tests I have had, the correct word should be :
encephalomyeloneuropathy -- a disease involving the brain, spinal
cord, and peripheral nerves!
M.E. - We should change the US CFIDS name to the
international name: ME
ME -- ME is much more descriptive of our symptoms and internationally
people recognize it.
Myalgic Encephalopathy
-addresses both the muscular pain and the problem of brain cell
and/or nerve conduction to the muscles
-does not include fatigue or syndrome in the name
M.E. -- since it's already being used around the world. I have already
started to use it myself. Now there's a term that commands respect!
Myalgic Encephalomyalitis! Sounds pretty serious to me!
Myalgic Encephalomyelitis
It has been the accepted name of the disease in parts of Europe
and Canada for 40 some odd years. This would at least bring the
United States PWC community under a credible, identifiable heading,
thus making one large body of information more accessible to all!
M.E. Myalgic Encephalomyelitis
It's already in use and therefore simpler than completely changing
the name before more is known. Avoiding confusion is important.
The Arthritis Foundation considers fibromyalgia and reflex
sympathetic dystrophy to be NON-inflammatory forms of arthrITIS
and no one is complaining about that as far as I know. - C.M.E. - Chronic Myalgic Encephalopathy
- Sounds similar to M.E. (familiar outside the U.S.) with a relapsing element added, also sounds totally perplexing ... but serious.
- S.M.E. -- Systemic Metabolic Encephalopathy
- Systemic- generalized, involving the entire body (I have been
told I have "global field deficit", sounds systemic to me)
Metabolic- abnormality of the body chemistry (covers whatever they
discover next with enzyme pathways, toxin metabolites, virus
genomes, DNA sequencing, killer cells and other immune
components, free radicals, apoptosis, mitochondrial
dysfunction, etc.)
Encephalopathy- the master switch doesn't work right so neither
do the relays (I have also been told I am hypo-parasympathetic
due to encephalopathy)
- Ramsay's Disease
- Dr. Marvin Ramsay gave the disease the name Benign
Myalgic Encephalomyelitis when studying an outbreak among
medical personnel at the Royal Free Hospital in London in the
mid-1950s. He soon took the name "benign" off, stating "There
is nothing benign about this disease." There has been an M.E.
Society in the U.K. for three decades. Hence, the beginning of
continuousstudy of this disease occurred in the U.K., and
Dr. Ramsay was the original investigator.
Ramsay's Encephalopathy --
Pays tribute to Dr. Ramsay, sounds totally perplexing
- but SERIOUS.
Ramsays Disease
M.E. was the term used in the U.K. for four decades, but
following the Royal Colleges report of 1995 doctors are opting
for the CFS tag here in the UK and I do not believe they will
accept a 'scientific' name without a great deal more evidance
for such a name. So it may well be better to opt for Ramsay's
Disease as such a non-scientific name may face less objections
from the medical profession. - Ramsays encephalopathy (RE) or Ramsays acquired encephalopathy (RAE)
- Many great efforts have been placed into the issue of finding a new name to replace
CFS. Most of all Robert Burns has done a tremendous job in this field and I respect
his view that we have to settle for less than the best, ie a scientific based,
precise name for the moment, due to political reasons. Now if we do have to have a
eponym, why not combine it with something at least a bit descriptive, so here is my
suggestion: Ramsays encephalopathy (RE) or Ramsays acquired encephalopathy (RAE).
It is not crucial for the eponym to be Ramsay, it could be Osler or whatever, as long as we were allowed to keep the "encephalopathy" part. As far as I know there has been no-one who have denied that this disease is a encephalopathy. I'm not familiar with the historical literature on CFS, so I do not know who among the early researchers were the first to use the term "encephalopathy" or maybe "encephalitis". The eponym could be given to the first to use either of these terms.
- MIDS - Multple Immune Dysfunction Syndrome
- My choice is "MIDS" (Multiple Immune Dysfunction Syndrome).
It's close enough to CFIDS, which should help with any name-change
MIDS -- multiple because if affects multiple systems in multiple ways
immune dysfunction because it cover the up- and/or
confusion -- yet "real" enough my neighbor can't say "yeah, I get tired too".
MIDS, with qualifiers for all the different subsets
MIDS -- multiple because if affects multiple systems in multiple ways
immune dysfunction because it cover the up- and/or
down-regulation syndrome - for obvious reasons
MIDS-- multiple immune Dysfunction Syndrome
-- because it includes FMS and MFS and GWS - CIDS, pronounced (SIDS) Chronic Immune Dysfunction Syndrome
- CIDS -- Drop the fatigue in CFIDS.
We all know it is some kind of immune dysfunction,
whether its CFS, Fibromyalgia, ME, etc. Fatigue trivializes
the disorder and it is so much more than "being tired"!!! The term
CIDS is close enough to AIDS. Maybe get more peoples attention to
the seriousness of the illness.
CIDS - Chronic Immune Dysfunction Syndrome
Basically because we may have a better chance of JUST
dropping the "F" word than changing the entire name when
we don't have a cure or an "agreeable cause" - Not CIDS!
- Sounds exactly like SIDS, which is Sudden Infant Death Syndrome. Would cause too much confusion.
- NEID - Neurological, Endocrine, Immunological Disorder
- NEID - I am a physician with both CFIDS and FM. Earlier CFIDS
predominated and now FM predominates. My gut feeling is the
etiology is neurological with the other interconnected systems
following suit. But who knows, therefore I believe all parts must be
included to gather us all up.
NEID -- Suggest we combine into Neuroendocrinoimmunological Disorder.
It's a gawdawfully long word, but really not much more than
the study of psychoneuroimmunology! ;-) - CFS - Chronic Fatigue Syndrome
- While we all seem to agree that a more accurate name would be
desirable, I do not agree that there is unanimity that the name
should be changed now. The fact that there are so many variations
for a new name is an indication of why.
Therefore: my only vote is for retaining Chronic Fatigue Syndrome. - CFIDS - Chronic Fatigue Immune Dysfunction Syndrome
- CFIDS - I suggest we stick with Chronic Fatigue Immune Dysfunction
Syndrome and, instead of wasting precious energy looking for a
better name, redirect that energy into lobbying for funds to conduct
research into the cause and subsequent cure.
CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome
It's already in use and therefore simpler than completely
changing the name before more is known. Though
distasteful, it's better than CFS.
- Names to exclude
- Fatigue - (many posters) "Get the "F" word out of there!"
Syndrome - I guess I could take the word Syndrome, if I had to.
Syndrome - Sounds like the latest fad.
Chronic - Sounds like someone whining all the time.
Fatigue -- My vote is for anything that does not include the "f word"!
Fatigue - Of course we have fatigue. We're SICK! Would you call
congestive heart failure a "chronic fatigue syndrome"
disease? But it is.
Fatigue - Implies that it is due to working and will improve with rest.
By definition ours does not improve with rest.
Fatigue - I would never have chosen the word "fatigue". For me, it is
weakness coupled with pain and confusion.
Fatigue -- I have had CFIDS since 1987. The "f" word really doesn't
help us out in so many aspects of our lives.
Acquired - Sounds to much like AIDS; don't need the bad publicity. - Any eponym
- It illuminates all kinds of problems that come packaged with a physiologic-based name, and an eponym using the name of someone who is dead would avoid politics involving living persons and their future statements.
- Bell Syndrome or David Bell Syndrome.
- There was never a doctor in the world who more deserved to be honored by having a disease named for him.
- Nightingale Syndrome
- It was believed at one point that Florence Nightingale, who is credited with originating the profession of nursing, had M.E. While the disease she had showed similar symptoms, most historians believe it was not M.E. However, her birthday, May 12th, continues to be honored internationally as M.E./CFIDS Awareness Day.
- James Disease
- Alice James had CFS in the 19th Century, starting when she was a child: Click on for a scholarly paper on Alice James and CFS
- 1. Gilliam-Ramsay's Disease
- Gilliam wrote in great detail, and was a "stickler" for the exact methods of doing research, which brought him recognition; he was also in the gov'mt health departments, the first at the NIH in epidemology. He wrote a 90 page book in great detail which followed his study of the 1934 LA County General Hospital outbreak, which involved around 100 medical people. Dr. Ramsay was involved with the outbreak at the "Royal Free Hospital" in London. They respect him, also, so much so they have an ME Society named after him. Both doctors worked on this project until they died.
- 2. Osler's Disease
- Osler was a very well-loved doctor by patients and students alike. Osler taught his students to listen what the patient was saying...the absolute key in knowing CFIDS. Doctors who listen, and know, can pick out probable CFIDS cases in 5 minutes or less. This is what is lacking in medicine today, and is the most important step in diagnosing CFIDS. I believe we will have more success with an eponym than a physiologic-base or etiologic-based name, because we have seen the lethargic results in this coming to be. Government work is usually very slow, and in our case, even slower. We will be pushing up daisies by then, most likely. Also, scientists and doctors in general like the idea of a disease named after a doctor, and thus I think it would have a better chance. Also, we are finding out more organs and systems affected, and limiting the name to one system/organ would diminish the chance of another researcher in another field to even consider studying it. Yet, if it had a "broad" name, as I have suggested, all fields of research could use it.
- Multiple Sclerosis Type B
- We have a good friend with MS whose symptoms are alarmingly similar to ours, plus MS is very familiar to most people, and scary as hell.
- Neurocirculatory Asthenia
- Based on Dr. Bell's recently published findings of low circulating blood volume in PWCs
- Please withdraw my nomination for "neurocirculatory asthenia."
- I suggested it because Dr. David Bell, whom I respect, suggested it after doing his low blood volume research. However, Taber's dictionary defines it as "a psychosomatic disorder characterized by mental and physical fatigue, dyspnea, giddiness, precordial pain and palpitation, esp. on exertion. SYN: neurosis, cardiac. ETIOL: Unknown but occurs in individuals who are under conditions of stress. It is common among soldiers in active war service. TREATMENT: Removal from stress situations and psychotherapy." (more than one person suggested the name so it was not withdrawn.)
- Infectious Venulitis
- was suggested by Dr. Ryll, Carmichael, CA) who has studied the disease in California for 15 years
- Dysenergism
- Suggested by Dr. St. Armand; means a condition of painful/disrupted energy.
- Neurotransmitter brownout:
- Special cases:
Environmentally Induced Neurotransmitter Brownout
By inhalation, contaminant in bloodstream to liver
By eating or drinking, contaminant in bloodstream to liver
By electrical field causing excessive consumption
Microbiologically Induced Neurotransmitter Brownout
By bacterium
By virus
By fungus
By yeast
Psychological in origin
excessive consumption due to failure to gate
typically brought on by panic or conditioned by abuse
[Yes I'm saying there is an IAIYH case. The fact that
one exists does not mean the other cases do not exist.] - Neurotransmitter brownout causes. Pain: shortage of reuptake agent for noioceptors
Pain perception: shortage of some inhibitory neurotransmitter
Muscles hurting or always tense: shortage of acetylcholinesterase
Brain fog: shortage of excitatory neurotransmitter in brain
Momentary depression: shortage of some inhibitory neurotransmitter
Heart rate increase: shortage of acetylcholine(sp?)
Digestive malfunctions (IBS, etc): shortage of acetylcholine
Ear problems: shortage of neurotransmitters consumed in inner ear
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If you have questions, just send a message to
Mary Schweitzer.