Chronic Fatigue Syndrome (CFS/CFIDS) & Fibromyalgia (FM)
are terms used in the United States.
Myalgic Encephalopathy/Encephalomyelitis (ME/M.E.) is used internationally.
What is CFS?
Official CFS/ME Case Definitions & History
CFS Prevalence
What is FMS?
Official FM Case Definitions
FM Prevalence
Common Acronyms
There is controversy in defining syndromes, determining who in particular has them,
and deciphering how many in the general population have them.
There is intrigue behind some of the information sources.
Some of the many mixed messages involved in CFS/FM:
CFS and FM are the same/different
CFS or FM is rare/quite prevalent
Only a few/many experience recovery
Its only physical / its only the other / it is that body-mind split
"There are political, medical, funding, and other reasons for considering CFS and FM differently, but I suggest staying aware of what goes on in both worlds. There is so much overlap in coping, treatment, and description, I prefer to welcome people with either or both or similar conditions to our support group. While the headlining symptoms of CFS and FM are experientially very different -- it feels different to be in pain than it does to be exhausted in the extreme, than it does to feel both, -- we have much to offer and learn from one another. Mixed messages ultimately prod us to dig deeper,
to figure out what fits best for us as individuals."
- Elly Brosius
Please also see our page about the syndrome of Orthostatic Intolerance (OI).
It may be overlapping and aggravating your CFS and/or FM.
Learning about OI gives more practical treatments to help yourself.
What is CFS?
New!
ME/CFS Primer for Clinical Practitioners
IACFS/ME -
5-5-12
The goal of the Primer is to provide the information necessary for clinicians to understand, diagnose, and manage the symptoms of ME/CFS.
International Consensus Criteria Published for Myalgic Encephalomyelitis
Research1st by K. Kimberly McCleary -
6-25-11
On July 20, 2011, the Journal of Internal Medicine e-published ahead of print "Myalgic Encephalomyelitis: International Consensus Criteria."
From "About CFIDS"
By The CFIDS Association of America
http://www.cfids.org/about-cfids/default.asp
ABOUT CFIDS
Chronic
fatigue and immune dysfunction syndrome (CFIDS, also known as chronic
fatigue syndrome, CFS, myalgic encephalomyelitis, ME and by many other
names) is a complex and debilitating chronic illness that affects the
brain and multiple body systems.
SYMPTOMS
Although its
name trivializes the illness as little more than mere tiredness,
chronic fatigue and immune dysfunction syndrome (CFIDS) brings with it
a constellation of debilitating symptoms.
CFIDS is
characterized by incapacitating fatigue (experienced as profound
exhaustion and extremely poor stamina) and problems with concentration
and short-term memory. It is also accompanied by flu-like symptoms such
as pain in the joints and muscles, unrefreshing sleep, tender lymph
nodes, sore throat and headache. Post-exertional malaise is a hallmark
of CFIDS and as the name implies, it is a period of profound fatigue
that follows mental or physical activity and requires twenty-four hours
(or longer) to recover.
People with
CFIDS (PWCs) have symptoms that vary from person to person and
fluctuate in severity. Specific symptoms may come and go, complicating
treatment and the PWC's ability to cope with the illness. Most symptoms
are invisible, which makes it difficult for others to understand the
vast array of debilitating symptoms with which PWCs contend.
Additional
symptoms are frequently reported by PWC's such
as word-finding difficulties, inability to comprehend/retain
what is read, inability to calculate numbers and impairment of speech
and/or reasoning. PWCs also have visual disturbances (blurring,
sensitivity to light, eye pain, need for frequent prescription
changes); psychological problems (depression, irritability, anxiety,
panic attacks, personality changes, mood swings); chills and night
sweats; shortness of breath; dizziness and balance problems;
sensitivity to heat and/or cold; alcohol intolerance; irregular
heartbeat; irritable bowel (abdominal pain, diarrhea, constipation,
intestinal gas); low-grade fever or low body temperature; numbness,
tingling and/or burning sensations in the face or extremities; dryness
of the mouth and eyes (Sicca aka Sjorgren's syndrome); menstrual problems including
PMS and endometriosis; chest pains; rashes; ringing in the ears
(tinnitus); allergies and sensitivities to noise/sound, odors,
chemicals and medications; weight changes without changes in diet;
light-headedness; feeling in a fog; fainting; muscle twitching; and
seizures.
[See also CFSupport's MVPS/dysautonomia and orthotatic intolerance list of symptoms.]
DIAGNOSIS
Diagnosis of
chronic fatigue and immune dysfunction syndrome (CFIDS), also known as
chronic fatigue syndrome (CFS), is a time-consuming and difficult
process which is generally arrived at by excluding other illnesses with
similar symptoms and comparing a patient's symptoms with the 1994
International case definition. As yet, there is no indicator or
diagnostic test that can clearly identify the disorder. Overlapping
symptoms can occur with several diseases, such as fibromyalgia, Gulf
War Illnesses and multiple chemical sensitivities. Many
diseases have similar symptoms including lupus, hypothyroidism
and Lyme disease and these need to be considered when
making a diagnosis.
------------------------------------------------------------------------ End CFIDS Association Excerpt
Where can I find more description of
Chronic Fatigue Syndrome / Myalgic Encephalomyelopathy (-myelitis)?
About CFIDS - CFIDS Association of America
About CFS: What is Chronic Fatigue Syndrome? - NIH-Trans Working Group on CFS
About Chronic Fatigue Syndrome - OFFER An Overview of ME-CFS About ME/CFS
Chronic Fatigue Syndrome - National Women's Health Information Center
Fibromyalgia & Chronic Fatigue Syndrome - Related Syndromes? - Lorden/Carousel Network
An Introduction to Chronic Fatigue Syndrome - Immune Support
ME/CFS - A Basic Overview - ME/CFS Society Southern Australia
ME/CFS - An Overview - ME Association
What is ME? ME Research UK
What is ME? ANZMES New Zealand
What is ME/CFS? Network ME
What is CFS - ME/ CFS ? CFS Information International
What is/Understanding M.E.. and CFS? The Nightingale Research Foundation, Canada
The Nightingale, M.E. Definition Jan 2007 (PDF) The Nightingale Research Foundation, Canada
CFIDS Fact Sheet 2002 - Mass CFIDS
The Diagnosis of Chronic Fatigue Syndrome: An Assertive Approach by
Paul R. Cheney, MD, PhD and W. Charles Lapp, MD, FAAP Help ME - Circle
Official CFS and ME Case Definitions and History
History of CFS/ME Case Definitions - US/International
Mette Marie Andersen, MD, CFS Info
A brief historical account of CFS Case Definitions
Trans-NIH Working Group for CFS
Listing of diagnostic criteria from US and World
Trans-NIH Working Group for CFS
January 2007 Nightingale, M.E. Definition (PDF)
The Nightingale Research Foundation, Canada
2005 Myalgic Encephalomyelitis / Chronic Fatigue Syndrome:
A Clinical Case Definition and Guidelines for Medical Practitioners,
An Overview of the Canadian Consensus Document
[was at http://fm-cfs.ca/me_overview.pdf]
2004 ME/CFS Management Guidelines for General Practitioners (PDF)
- Australia
Comparing the Fukuda et al. Criteria and the
Canadian Case Definition for Chronic Fatigue Syndrome (PDF)
Jason, Journal of CFS
2003 Summary of Canadian Expert Consensus Panel
CFS/ME Clinical Case Definition for CFS/ME (First Clinical Definition) -
M.E. Society of America
2003 Carruthers Canadian Myalgic Encephalomyelitis / Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment Protocols
Journal of Chronic Fatigue Syndrome, Vol 11 No 1, Haworth Press
http://fm-cfs.ca/CFS-Protocol.pdf
2003 Ambiguities in 1994 Fukuda Case Definition and Recommendations for Resolution
www.biomedcentral.com/content/pdf/1472-6963-3-25.pdf
Centers for Disease Control and Prevention: CFS Case Definition (Research)
The Revised Case Definition (abridged version)
- CDC.gov
1994 Fukuda Research Case Definition (Annals of Internal Medicine)
www.annals.org/cgi/content/full/121/12/953
Myalgic Encephalomyelitis Definitions 1956 - 1994
1957 (Wallis), 1959 (Acheson), 1988 (Ramsay) Research Descriptions of M.E.
CFS Prevalence
Much here is from
"About CFIDS"
By The CFIDS Association of America
http://www.cfids.org/about-cfids/prevalence-study.asp
Summer 2007 cover story of The CFIDS Chronicle: "Prevalence
Figures - How many Americans have CFS? A new study suggests millions.
Here is a closer look at the latest numbers and what they could mean." by K. Kimberly McCleary, CFIDS Association President & CEO
June 2007 - Approximately 4 million in USA!!
Population Health Metrics http://www.pophealthmetrics.com/content/5/1/5 "Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia" William
C Reeves, James F Jones , Elizabeth Maloney, Christine Heim, David C
Hoaglin, Roumiana S Boneva, Marjorie Morrissey and Rebecca Devlin
See also
The CFIDS Association Press Release at
http://www.cfids.org/sparkcfs/pr060807.pdf
Summary:
According
to the study authors, it is not certain that the prevalence rate found
in Georgia can be extrapolated to the entire United States. But
if this rate were to be found to be replicable, the prevalence of
adults with CFS in the U.S. would be around 4 million, which is the
figure Dr. William Reeves has frequently cited in presentations based
on the Georgia study data. The 7.5 million figure in Peter
White’s commentary appears to include all Americans, not
Americans between the ages of 18-59, which is the age demographic
strictly applicable to the 2.54% prevalence found in Georgia.
For Dr. Jason's comment on problems with this study and prevalance, see http://www.immunesupport.com/library/showarticle.cfm/ID/8066
As of late 2006
More than one million Americans have CFS according to studies conducted
by researchers at the Centers for Disease Control and Prevention and
DePaul University. Approximately 80-90% of patients have not been
diagnosed and are not receiving proper medical care for their illness. As of mid 2006:
A study conducted by researchers at DePaul University estimates CFS at
approximately 422 per 100,000 persons in the U.S. [1999] This means as many as
800,000 people nationwide suffer from the illness. 90% of patients have
not been diagnosed and are not receiving proper medical care for their
illness.
(Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV,
Taylor RR, McCready W, Huang CF, Plioplys S: A Community-Based Study of
Chronic Fatigue Syndrome Arch Int Med 1999; 159(18):2129-37.)
CFIDS does not
discriminate.
It strikes people of all age, racial, ethnic, and
socioeconomic groups.
Research has
shown that CFIDS is about three times as common in women (522/100,000)
as men, a rate similar to that of many autoimmune diseases, such as
multiple sclerosis and lupus. To put this into perspective, CFIDS is
over four times more common than HIV infection in women (125/100,000),
and the rate of CFIDS in women is considerably higher than a woman's
lifetime risk of getting lung cancer (63/100,000).
From CDC
2006:
"More than 1 million Americans suffer from Chronic Fatigue Syndrome (CFS).
Information is available to help identify treatment strategies."
http://www.cdc.gov/cfs
2003:
Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas.
Archives of Internal Medicine 2003;163:1530-1536.
http://www.cdc.gov/cfs/publications/surveillance_5.htm
The overall weighted
point prevalence of CFS, adjusted for nonresponse, was 235 per 100,000
persons (95% confidence interval, 142-327 per 100,000 persons). The
prevalence of CFS was higher among women, 373 per 100,000 persons (95%
confidence interval, 210-536 per 100,000 persons), than among men, 83
per 100,000 persons (95% confidence interval, 15-150 per 100,000
persons). Among subjects who were nonfatigued and fatigued for less
than 6 months, the 1-year incidence of CFS was 180 per 100,000 persons
(95% confidence interval, 0-466 per 100,000 persons).
From a quality paid public awareness ad by the CDC in 2 July 2006 women's magazines, appearing before
the newest research finished its peer review and was published: "More
than four million Americans suffer from CFS, and the majority don't
know they have it."
What is FMS?
Fibromyalgia syndrome, also called "FMS" or "FM,"
is a chronic condition of widespread pain, as well as a variety of
other symptoms. The name comes from fibro- (fibrous
tissues such as tendons and
ligaments), -my- (muscle), -algia (pain) and syndrome for the
rest of the symptoms which, for many, also includes fatigue.
The pain of fibromyalgia is often described as
diffuse aching or burning, often
accompanied by muscle spasm. The pain and the fatigue of fibromyalgia varies from person to person.
Fatigue can range from a mild, tired feeling to the exhaustion of a flu-like
illness. The pain
can vary in degree and migrate, becoming most severe in parts of the body that are
used the most (i.e., the neck, shoulders, and feet). In some people,
the pain can be intense enough to interfere greatly with work and
ordinary, daily tasks, while in others it causes only mild discomfort.
Symptoms vary from person to person and include
-stiffness, particularly apparent upon awakening and after prolonged periods of
sitting or standing in one position or coinciding with changes in
temperature or relative humidity;
-headaches or facial pain including frequent migraine, tension,
vascular headaches, TMJ;
-sleep disturbances, unrefreshing sleep;
-digestive disturbances: pain, bloating, constipation, diarrhea, IBS, difficulty
swallowing;
-genito-urinary problems such as increased frequency of urination or
increased
urgency to urinate, interstitial cystitis (IC), more painful
menstrual periods, conditions such as vestibulodynia (vulvar
vestibulitis) or vulvodynia, characterized by a painful vulvar region
and painful
sexual intercourse;
-numbness or
tingling, prickling or burning, particularly, in the hands or feet;
-skin complaints such as itchy, dry, or blotchy skin, and dryness of the eyes and mouth, a sensation of swelling,
particularly in fingers;
-chest/heart/circulatory/autonomic nervous system imbalance type
symptoms such as migrating chest pain, orthostatic intolerance,
MVPS/dysautonomia, shallow breathing, unsatisfying breath,
dysequilibrium, temperature sensitivity, light-headedness, anxiety
and/or depression, balance problems,
nausea, visual problems when driving a car, reading a book, or
trying
to track objects. NMH, POTS, more... see our MVPS/OI page
-environmental sensitivities including hypersensitivity to light, noise, odors, and weather;
-cognitive symptoms, nicknamed brain-fog or fibro-fog, including difficulty concentrating, feeling spaced out,
short-term memory difficulty, being distracted or overwhelmed easily;
-restless legs, an irresistible urge to move the legs
particularly when still too long;
-exaggerated reactions to a variety of substances including medications, chemicals,
food additives, pollutants, etc.
Where can I find more description of Fibromyalgia / Fibromyalgia Syndrome?
About Fibromyalgia - OFFER
About Fibromyalgia - National FM & Chronic Pain Association (NFMCPA)
Fibromyalgia & Chronic Fatigue Syndrome - Related Syndromes? - Lorden/Carousel Network
Understanding Fibromyalgia - Immune Support
What is Fibromyalgia? - NIH, NIAMS
What is Fibromyalgia? - Fibromyalgia Coalition International
What is Fibromyalgia Syndrome? -The FMS Community
What is Fibromyalgia Syndrome? - FM Network
What is Fibromyalgia Syndrome? - National FM Partnership
Official FMS Case Definitions
2010 American College of Rheumatology (ACR) Fibromyalgia Diagnostic Criteria
2005 Fibromyalgia Syndrome
A Clinical Case Definition and Guidelines for Medical Practitioners,
An Overview of the Canadian Consensus Document
[was at http://fm-cfs.ca/fms_overview.pdf]
2003 Fibromyalgia Syndrome
Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols,
A Consensus Document
The Journal of Musculoskeletal Pain, Volume 11 No 4, Haworth Press
http://fm-cfs.ca/FM-Guidelines-Journal.pdf
1990 American College of Rheumatology Diagnostic Criteria for the Classification of Fibromyalgia
FM Prevalence
The Incidence of Fibromyalgia and Its Associated Comorbidities:
A Population-Based Retrospective Cohort Study Based on
International Classification of Diseases, 9th Revision Codes.
"Results:
A total of 2595 incident cases of fibromyalgia were identified between
1997 and 2002. Age-adjusted incidence rates were 6.88 cases per 1000
person-years for males and 11.28 cases per 1000 person-years for
females. Females were 1.64 times (95% confidence interval = 1.59-1.69)
more likely than males to have fibromyalgia. Patients with fibromyalgia
were 2.14 to 7.05 times more likely to have one or more of the
following comorbid conditions: depression, anxiety, headache, irritable
bowel syndrome, chronic fatigue syndrome, systemic lupus erythematosus,
and rheumatoid arthritis.
Conclusion: Females
are more likely to be diagnosed with fibromyalgia than males, although
to a substantially smaller degree than previously reported, and there
are strong associations for comorbid conditions that are commonly
thought to be associated with fibromyalgia."
ImmuneSupport.com comments on above study, 07/03/06:
New Epidemiological Findings Suggest FM Affects 12 Million Americans
First Large Population Analysis Puts Incidence of Fibromyalgia in New Light
The
first-ever large population-based analysis of U.S. Fibromyalgia
incidence, just released, indicated an occurrence rate of about 4.2
percent.
This is based on a review of claims records for a
national health insurance database including a “large,
stable” population averaging 62,000 enrollees over the period
1997 through 2002. The new large-population review, conducted by a
research team at the University of Utah Department of Family and
Environmental Health, identified 2,595 cases of Fibromyalgia in the
overall enrollee population.
Their calculations also provide new, more broadly based statistics on:
Fibromyalgia incidence by gender. Females in the
database were 1.64 times more likely than the males to have
physician-diagnosed Fibromyalgia. That’s a mix of about 62
percent female and 38 percent male; a “substantially”
less-marked difference than many small population-based studies had
reported.
Strong associations with other, coexisting
conditions. Enrollees diagnosed with Fibromyalgia were also
significantly more likely than the 59,400-some other health plan
enrollees to have one or more of seven coexisting conditions
(“comorbidities”). As a group, based on International
Classification of Diseases ( ICD-9-CM) diagnostic coding, the
Fibromyalgia patients were anywhere from 2.14 times to 7.05 times more
likely to have depression, anxiety, headache, irritable bowel syndrome,
Chronic Fatigue Syndrome, systemic lupus erythematosus, and rheumatoid
arthritis.
From Fmaware.org Q&A 8/21/2001 with Roderick S. Hooker, PhD, PA:
"This disorder occurs
predominantly in middle-aged women, although the range is reported to
be between 8 and 80 years, and both males and females are affected. In
industrialized societies FMS affects approximately 2% to 4% of the
population.[1,2]"
1) Hooker RS. Treated prevalence of fibromyalgia within an HMO population. Arthritis Rheum. 1987;30:S60.
2)
Wolfe F, Ross K, Anderson J, Russell IJ, Hebert L. The prevalence
and characteristics of fibromyalgia in the general population.
Arthritis Rheum. 1995;38:19-28.
From
Estimates of the PREVALENCE of Arthritis and Selected Musculoskeletal Disorders in the United States (Wolfe,..., 1998)
http://www.rheumatology.org/publications/Prevalence98.pdf
"... fibromyalgia is
not rare, and it has a potential societal impact in terms of reduced
quality of life, decreased functioning in the workplace, and increased
utilization of medical services....
In summary, available
data (Table 9) suggest that the number of persons age 18 and older in
the US who have fibromyalgia is approximately 3.7 million. Prevalence
is lower in men (0.5%) than in women (3.4). Overall prevalence for
adults is approximately 2% and increases with age. The variation in
estimates of fibromyalgia prevalence across studies probably reflects
the differences in diagnostic or classification criteria ..."
From
"FMS Monograph"
By The National Fibromyalgia Partnership
http://www.fmpartnership.org/engmonog.htm
Although the exact prevalence of FMS in the
general population is difficult to ascertain, up to 10 million
Americans have been estimated to have fibromyalgia syndrome,1
and the condition exists around the world. While most prevalent in
adult women, fibromyalgia also occurs in children, the elderly, and
men.
1.
Muhammad Yunus, M.D., "What's New in Fibromyalgia Syndrome? A Review of
Abstracts Presented in the 1996 American College of Rheumatology Annual
Scientific Meeting: Part 1", The Fibromyalgia Times, Vol. 1, No. 4,
Winter 1997, p.4.
Top
Common CFS/FMS Related Acronyms
CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome
CFS - Chronic Fatigue Syndrome
CIND - Chronic Immunological and Neurological Diseases
EI - Environmental Illness
FM or FMS - Fibromyalgia or Fibromyalgia Syndrome
GWI or GWS - Gulf War Illness or Gulf War Syndrome
IBD - Inflammatory Bowel Disease
IBS - Irritable Bowel Syndrome
MCS - Multiple Chemical Sensitivity
ME - Myalgic Encephalopathy or Myalgic Encephalomyelitis
MPS - Myofascial Pain Syndrome
MVPS/D - Mitral Valve Prolapse Syndrome / Dysautonomia
NMH - Neurally Mediated Hypotension
OI - Orthostatic Intolerance
POTS - Postural Orthostatic Tachycardia Syndrome
PWC - Person With CFIDS
YPWC - Young Person With CFIDS
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