CFS ME CFIDS Research and medication database. Myalgic Encephalomyelitis. Chronic fatigue and immune dysfunction  syndrome.
CFS name change

My favorites at the moment are:
1.) ME/CFS

Myalgic Encephalopathy / Chronic Fatigue Syndrome

ME sounds like a serious disease (which it is!) and CFS is already well known.
Furthermore, dropping CFS completely from a new name could cause problems with disability and medical insurance claims. So the term 'CFS' should accompany any new name (if only for a period of time.)

2.) NEME

Neuroendocrineimmune Myalgic Encephalomyelitis

(Why not just combine the WHO-accepted term ME with the best new suggestion!?)

3.) ME

Myalgic Encephalomyelitis

(This is not really a good name - but the others are even worse. Until the causes of the disease are not discovered, this seems to be the most realistic and already well-known name!)

4.) ND




Neuroendocrineimmune Disease

Neuroendocrineimmune Dysfunction

Neuroendocrine & Immune Dysfunction Disease
Is a given abbreviation for the new disease-name already in use?
This pharma-lexicon comes in handy:

CFS/ ME/CFS name change committee

Sunday, 4th February 2007

The CFS-name change committee:

The CFS/ME-name change committee: Drs. Anthony Komaroff, David Bell, Nancy Klimas, Leonard Jason, Charles Lapp, Lucinda Bateman, Paul Cheney.
From left to right
Drs. Anthony Komaroff, David Bell, Nancy Klimas, Leonard Jason,
Charles Lapp, Lucinda Bateman, Paul Cheney.

The CFS Name Change Advisory Board - whose combined research and clinical experience totals more than 150 years - met in Florida January 12, and reached a consensus agreement that a new name should be adopted for Chronic Fatigue Syndrome. While it is certain that no name will please all patients, the group feels that the new name they propose will improve the legitimacy of the disease, and remove the stigma of having a disease with 'fatigue' as the primary descriptor.

A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether 'Chronic Fatigue Syndrome' was an appropriate name for the disease, and to suggest an alternative name if necessary. Patients and CFS clinicians have long held that 'chronic fatigue syndrome' trivializes the serious nature of the disorder, and have called for a change of the name first adopted by the CDC in 1988.

The impetus for assembling the group was the belief that a panel of the world's leading experts could provide legitimacy and scientific credibility to patients seeking a new name.

The committee, called "the CFS Name Change Advisory Board" by its organizer, CFS patient Rich Carson, included Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Dr. Peterson was unable to attend the meeting, but was consulted via telephone afterward.

Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names. The majority of attention was spent discussing 'ME' - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. 'ME' has been used in many countries, including Great Britain.

'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate.

Recent scientific advances point to the usefulness of the ME label, as brain pathology with often painful consequences, especially in muscle, is increasingly documented in patients with this condition.

The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that 'CFS' should accompany any new name, at least for a period of time. It was acknowledged that CFS currently has some name recognition, though according to the CDC, less than 20 percent of the patients have been diagnosed.

The researchers expressed their belief that the term 'ME/CFS' (or 'CFS/ME') is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where 'CFS' was recently changed to 'ME/CFS'.

In a recent related event, the board of directors of the International Association for CFS (IACFS) voted to recommend that the name of that organization be changed to the IACFS/ME. This motion is currently being voted on by its members, and if approved, the name of that organization will soon be changed.


CFS name change

Wednesday, 31. January 2007

List of names suggested from various sources to replace the unlucky chosen name chronic fatigue syndrome.

Scientific and/or descriptive name suggestions
  • Autonomic Nervous System Dysfunction Syndrome
  • Autonomic Neuro-Encephalopathy (Syndrome)
  • Brainstem Encephalopathy
  • Chronic Encephalopathy Syndrome
  • Chronic Immune Dysfunction Syndrome (CIDS)
  • Chronic Immune and Neurologic Dysfunction Syndrome
  • Chronic Immune and Neurologic Deficiency Syndrome
  • Chronic Immunological Encephalopathy
  • Chronic Multiple System(ic) Dysfunction (CMSD)
  • Chronic Neuro-Dysfunction Syndrome
  • Chronic Neuroinflammatory Disease
  • Chronic Neuro-Immune Dysfunction Syndrome
  • Debilitating Fatigue Disorder
  • Dysregulated Neuro-Immune Function (Syndrome)
  • Encephalopathy with Systemic Dysregulation
  • Encephalomyopathy
  • Endocrine & Immunological Deficiency
  • Energy Deficit Disorder
  • Genetic Multisystem Immunodeficiency
  • Hypothalamic Dysregulation
  • Hypothalamic-Limbic Dysregulation
  • Hypothalamus Pituitary Adrenal Dysfunction (HPAD)
  • Immune Dysfunction Syndrome (IDS)
  • Immune Dysfunction Disease (IDD)
  • Immunological & Adrenal Disorder
  • Immunological & Adrenal Dysfunction Disorder
  • Immunological/Adrenal Debilitation
  • Immunological/Adrenal Deficiency (IAD)
  • Immuno-myalgic Encephalopathy (IME)
  • Immune System Dysfunction Disease (ISDD)
  • Metabolic Cardiomyopathy
  • Mitochondrial Insufficiency Disease
  • Multiple Metabolic System Failure (MMSF)
  • Multiple System(ic) Dysfunction (MSD)
  • Multisystem Autonomic Disfunction (MFD or MSAD)
  • Multisystem Autonomic Immune Dysfunction (MAID)
  • Multisystem Syndrome
  • Myalgic Encephalomyelitis (ME)
  • Myalgic Encephalomyelopathy
  • Myalgic Encephalopathy (ME)
  • ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)
  • ME/CFS (Myalgic Encephalopathy / Chronic Fatigue Syndrome)
  • Myalgic Neuro-Encephalopathy (MNE)
  • Myalgic Immunodysfunction Encephalomyelitis (MIDE)
  • Myo-Encephalopathy
  • Neuro-Cognitive Encephalopathy
  • Neuro-Cognitive-Endocrine Dysfunction Syndrome
  • Neuro-Cognitive-Endocrine Encephalopathy
  • Neuro-Dysregulation Encephalopathy
  • Neuroencephalopathy
  • Neuroendocrine Disease
  • Neuroendocrineimmune Disease (ND)
  • Neuroendocrine-Immune Dysfunction (NID)
  • Neuroendocrineimmune Dysfunction Syndrome (NDS)
  • Neuroendocrineimmune Myalgic Encephalomyelitis (NEME)
  • Neuroendocrine & Immune Dysfunction Disease (NIDD)
  • Neuro-Immunological disease
  • Neuroimmunological entropy syndrome (NES)
  • Neuro-Inflammatory Disease
  • Neurologic Myalgic Encephalopathy (NME)
  • Neurological Encephalopathy
  • Neuro-Muscular Immune Dysfunction
  • RNaseL Enzyme Deficiency (RED)
  • Systemic Acquired Immune Dysfunction (or Disease, Dystonia, Deficiency) (SAID)
  • Systemic Endo Cardio Neuroimmune Dysfunction (SECOND)
  • Systemic Endocrine & Immunological Deficiency (or Dysfunction)(SEID)
  • Systemic Mitochondrial Failure


Named after doctors and/or scientists
  • Bell-Cheney Disease
  • Cheney-Peterson Disease
  • Bell-Cheney-Peterson Disease (BCPD)
  • Peterson-Cheney-Bell-Komaroff-Klimas Disease (PCBKK)
  • Nightingale's Disease
  • Nightingale's Syndrome
  • Osler's Disease
  • Ramsay's Disease
  • Ransay's Encephalomyopathy
  • Ramsay's Encephalopathy
  • Ramsay's Encephalopathy Complex
  • Ramsay's Myalgic Encephalomyelitis / Encephalopathy
  • Ramsay's Syndrome


My thoughts

- We still don't know for sure what the cause or the causes are!
This must definitively be considered when creating a new name! So the new name should be general enough to encompass the results of further research. For example: "Multiple system failure" or "multiple system deficiency" or "multiple system disease"

- The terms 'neuro-', 'endocrine-' and 'immune-' should be general enough to sum up root organ causes of this illness. These terms also explain the root of the variety of symptoms that we suffer with.

The name "Chronic Immune Dysfunction Syndrome (CIDS)" has been suggested quite a few times on forums. Although it contains the term 'immune', it is still not a good idea as most probably more systems in this disease are involved than just the immune system! Furthermore there is sudden infant death syndrome (SIDS) which sounds the same as CIDS.

Better would be: "Neuroendocrine & Immune Dysfunction Disease (NIDD)" or just "Neuroendocrineimmune Disease (ND)" or something alike.

- The word 'fatigue' in the name is utterly superfluous!
You all had your personal experiences with people that would ridicule you upon hearing the term chronic fatigue syndrome.
Many serious illnesses have extreme fatigue and lack of energy as their main symptoms and still the symptoms itself are not described in its name: For example: AIDS, cancer, MS.

- The word 'chronic' is equally dangerous!
The word chronic, in my opinion, perpetuates the image of us as a bunch of whiners.
There are many other diseases that are chronic and do not include that word in their name: Multiple sclerosis, diabetes, AIDS, autism, etc.

- Let's call it a disease rather than a 'syndrome'!
(Because a disease is what it is!)

- We don't want to see words like 'somatic', 'benign', 'pathy', 'neuromyasthenia' or even 'idiopathic' in the new name!

- On the immunesupport-forum somebody said:
"...the benefit of using Nightingales disease/syndrome is that nearly everyone knows who Florence Nightingale was and I think that would lend legitimacy to the disease in peoples minds..."

This really wouldn't be a good idea. We definitively shouldn't call this serous disease after a bird! I know, it's supposed to remember the nurse Florence Nightingale - except that hardly anybody, for example in Europe, knows her!

The word "Nightingale" in German says "Nachtigall" which is a bird that sings nicely. Our illness is the exact opposite of nice, as you all know! "Nachtigall Krankheit" would be the German translation. This sounds utterly ridiculous. Way worse than chronic fatigue syndrome!

- Myalgic Encephalomyelitis (ME) has the great advantage that it was first named and it's how it's listed at the World Health Organization.
The name Myalgic Encephalomyelitis seems to have a greater chance of being accepted. After all it's already used by parts of the rest of the world and is listed in the WHO World Health Organization's IDC-10. (G93.3.) It mainly needs to be recognized by the U.S.

- Many protested on forums that Myalgic Encephalomyelitis is way to complicated a term. It is indeed quite complicated which is actually good - Chronic fatigue syndrome is a complicated disease! If people ask you what you have, tell them: "Myalgic Encephalo...somewhat.., I cannot even spell it correctly, is is such a complicated disease with a difficult to remember name!"
This will without doubt have a totally different effect on people than the 'fatigue-word'. Give it a try!

- As I read from the, it's basically impossible that any government will ever recognize any new name without a definitive test, mechanism or pathogen.
Can anybody confirm this?
If this is true, it might really be best to call it Myalgic Encephalomyelitis until such a pathogen is discovered, or effective diagnostic markers have been developed.

- Additionally, it has been said, that CFS can't really be called a "disease" because there is still no known cause, which is an essential requirement to be classified as a disease. So calling it a "syndrome" is appropriate, however big the disadvantages to our case.
Is this true?

- My suggestion is: Neuroendocrineimmune Myalgic Encephalomyelitis (NEME)
The advantages are obvious: Myalgic Encephalomyelitis is already well established, and the modern expression 'neuroendocrine-immune' explains the root of the variety of symptoms patients with chronic fatigue syndrome suffer with. A combination of both expressions seems to be an elegant solution.



20 reasons the name,
Chronic Fatigue Syndrome,
should be changed immediately:

Too many patients continue to have prejudicial events that make their existence with a misnamed disease all the more unbearable.

If you agree with having a change of the trivializing
name, chronic fatigue syndrome, please e-mail those
at the bottom of this list.

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931

It is impossible to convey the clinical severity of an illness
whose name merely denotes tiredness.
The current name conjures up an image of lazy, whiny
malingerers, thereby subjecting them to incredulity and ridicule.
There have been numerous jokes about CFS in the media by
well-known comedians which is upsetting and demoralizing to
The names implies "I'm tired all the time" which works against
the actual severity of the illness on all levels of life making the
stress of being not believed only adding to the burden of having
a severe neurological illness.
The current name impacts scientific methodology and
outcomes. It has not been unusual for published scientific
studies to have confused chronic fatigue with chronic fatigue
syndrome (Journal of the American Medical Association, 264/1,
1990, and many others). It allows some in the field of psychiatry
to incorrectly select patients with chronic fatigue instead of
chronic fatigue syndrome, leading to erroneous conclusions as
to the nature of the disease.

The name has thwarted private fundraising efforts as nobody
wants to give money to "tired" people when they can donate to
people with legitimate diseases.

The current name, elevated one symptom to an inflated status,
has wasted much research money in comparing it to other
"fatiguing illnnesses" which is still going on today (see Centers
for Disease Control and Prevention current funding projects,
etc.). This has left etiology and pathophysiology far behind.
The name of this illness was ME (myalgic encephalomyelitis)
since the 1950's which has been fully documented in scientific

Donna Shalala, former head of the DHHS, said on an ABC
News live chat in 1998: "I am not a scientist or a physician. In
terms of naming a disease, that is done by the scientists
studying the disease...

But, the scientists had already named this illness when the US
changed the name. Only 4 sicentists on the committee that did
this had actually worked in the area and all four objected to the
name proposed as well as to the criteria. It was, subsequently,
published without their names.
Several members of the original name change now regret
the the name they created and now admit that they did not
foresee the consequences. One who has never apologized is
now on the current CFS Advisory Committee who turned down a
three year draft proposal (and neglected to call it a "draft",
saying it was a name change despite letters sent to the
members). With this conflict of interest, shouldn't a recrusal from
the vote have been more appropriate?
The name has negative impact on every patient's health.
Changing the name would remove much of the stigma and bias
that the name has created.
Other illnesses have had name changes with no apparent
detrimental effects.
The President of the United States was asked for an official
proclamation for Awareness Day. His office replied, several
months later, that things like this are not done. The name
implication was obviously the stumbling block that led an aide to
turn down the request as there are days, weeks and months for
every other known disease as well as other things considered
"important" such as "National Blood Donor's Week", etc. In
spite of a draft of reasons that showed science and known
abnormalities, the name was, obviously, the reason for the

The American Association of Chronic Fatigue Syndrome
took a survey during their Cambridge, MA conference of 1998
and the majority of researchers and clinicians reponding agreed

"The name CFS makes it difficult to secure research funding for
this disease."

"The name CFS makes it difficult to secure other forms of
institutional support for CFS research."

"The name CFS makes it diffucult to secure help from
collaborators to conduct CFS research."

"The name CFS makes it diffucult to garner respect/support
from collegues not involved in CFS research."

"The name CFS makes it diffucult to get CFS research papers
accepted for publication."

The survey brought a few minutes of discussion at the former
Chronic Fatigue Syndrome Coordinating Committee as the
survery results were downplayed by Dr. Anthony Komaroff (now
a member of the new CFSAC) and the name change was again

A majority of patients (92%), in multiple surveys over the
years, are in favor of a name change.
A majority of patient organizations in the United States and
around the world are in favor of a name change. Only one has
said, "Not at this time, however."
Former US Assistant of Health, Philip R. Lee, M.D. said,
"First and foremost, most physicians have no respect for the
name and it sends the wrong message" as he urged the AACFS
to take strong action to advocate a name change before the
Department of Health and Human Services (DHHS).
The first winner of the AACFS's Rudy Perpich Memorial
Lifetime Achievement Award in CFS was Alexis Shelakov, M.D.
In his acceptance speech, Dr. Shelakov called for a name
The second winner of the AACFS's Rudy Perpich Memorial
Lifetime Achievement Award was Philip R. Lee, M.D., who
fought for a name change while a federal employee of the
DHHS. He left for a position with UCLA, discouraged at the lack
of movement in what the majority of professionals and patients
agreed upon---a change of name.
In a book authored by David S. Bell, M.D., the chair of the
new Advisory Committee who read a statement asking for no
name change at the second meeting and never allowed
discussion of a draft proposal (and, incorrectly, referred to it as a
"name change") by a federally appointed committee who had
worked for three years, he wrote:
"(CFS)...implies a benign condition of almost no importance..."
We could go on with another 100+ reasons, quotes, and mistreatment
due to the name chronic fatigue syndrome.