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Chronic Fatigue Syndrome    

Chronic Fatigue Syndrome (CFS) is a serious and complex illness that affects many different body systems. "Fatigue" is an inappropriate word to describe the incapacitating exhaustion, extremely poor stamina, generalized weakness, increased viral infections, and cognitive problems that patients experience on a daily basis.  CFS is also known as Chronic Fatigue and Immune Dysfunction (CFIDS) and Myalgic Encephalomyelitis (ME).

In the United States, CFS/ME first became recognized as a prominent disorder in 1988 when a case definition was developed by the Centers for Disease Control and Prevention (CDC).
Epidemiology studies from the CDC and the National Institutes of Health (NIH) indicate that CFS/ME affects individuals of all ages, racial/ethnic groups, and in all socio-economic classes.  Based on community surveillance studies from the CDC and the NIH, prevalence of CFS/ME is estimated at 238 - 422 per 100,000 Americans between the ages of 18 to 69, well over half a million people.  Fifty-eight per 100,000 children and adolescents are estimated to have CFS/ME.

CFS/ME differs from the more typical feeling of fatigue because it interferes with a person's ability to participate in the activity of every day life, sometimes for long periods of time.  Even the simplest task that uses a small amount of energy can put a person with CFS/ME into bed. 

Symptoms

  • Profound fatigue not alleviated by rest, lasting 6 months or more.
  • Prolonged low-grade fever, or below normal temperature, or sensation of a fever,
  • Sore throat.
  • Painful and/ or swollen lymph nodes.
  • Chills, night sweats, temperature, sensitivity, and/ or feeling alternately hot or cold.
  • Numbness, tingling or swelling of arms or legs, restless legs.
  • Exhaustion, lack of energy after exercise.
  • Headaches of a new type, severity, or pattern.
  • Pain in joint (arthralgia) without joint swelling or redness.
  • Generalized muscle weakness, ache or pain.
  • Dryness of mouth and / or eyes.
  • Sinus problems.
  • Sensitivity to light, eyelid swelling, eye pain, floaters, vision problems, hearing problems. 
  • Dizziness, especially on change of position, fainting, clumsiness, balance problems.
  • Flushing rash of face and cheeks, hypersensitivity of the skin, rashes.
  • Feeling "in a fog".
  • Heart palpitations, irregular heartbeat.
  • Neurocognitive complaints: forgetfulness, excessive irritability, confusion, short term memory loss, impairment of the ability to communicate (aphasia), difficulty thinking or concentrating, 
  • Secondary depression (due to illness).
  • Sleep disturbance; hypersomnia or more frequent insomnia/ unrefreshing sleep.
  • Nausea and /or irritable bowel syndrome (IBS), Bloating, irritable bladder.
  • Unexplained weight loss or, more frequently, weight gain.
  • Sudden alcohol intolerance and / or hypersensitivity to medication.
  • Increase in allergies, food, and / or chemical sensitivities.
This is a general list of  symptoms.  The Centers for Disease Control developed and published a new case definition for CFS in 1994.  Based on data from a variety of sources, the definition is currently under consideration, but for the time being, the 19994 criteria remains the "gold standard"

First there must be clinically evaluated, unexplained, persistent fatigue of new or definite onset, that is neither the result of ongoing exertion, nor relieved by rest.  This fatigue results in substantial reduction of activities.  In addition, four or more of certain symptoms must have persisted for  six months and must not have predated the fatigue.

The onset of CFS/ME may be gradual, building over time (months and years), or it can come on so suddenly that the patient can recall the exact date they became ill.

Daily fluctuation of symptoms is common. Patients can be somewhat functional in the morning, but become incapacitated later the same day.

There is no question CFS/ME frequently follows an acute infection, particularly the Epstein-Barr Virus.  Other infectious agents may also trigger CFS/ME.  Most medical professionals do not feel CFS/ME is contagious, because so few who come in contact with a CFS/ME patient become ill.  There is no evidence of transmission of CFS/ME. 

As yet, there is no cure, but there are therapies that can relieve discomfort and increase functional capacity!

It is wise to seek sound medical advice from a health professional that understands CFS/ME.  Few physicians are knowledgeable about this illness, so it may be best to find a care provider with whom you can develop a proactive relationship.  Look for someone who has compassion, the ability to listen, and an openness to learn about CFS/ME.  Some patients find it helpful to have a specialist consult with their own doctor on treatment protocol.

Diagnosis

There are no blood tests, x-rays, scans, or laboratory tests that can diagnose CFS/ME.  CFS/ME is diagnosed by careful documentation of medical history, a physical examination, the exclusion of other illnesses, the exclusion of primary depression, and by following the CDC guidelines.
Care providers should evaluate patients using the Centers for Disease Control definition of CFS/ME as their guide.  Before giving a CFS/ME diagnosis, other diseases should be ruled out.  Patients need to be screened for Multiple Sclerosis, Lupus, Rheumatoid  Arthritis, Myasthenia Gravis, Lymes Disease, Hepatitis, Anemia, Cancer, Thyroid Disease, Diabetes or other endocrine diseases, and HIV.

It is often a long process to be diagnosed with CFS/ME.  However, with further medical research and more care providers listening to their patients, CFS/ME is no longer an unheard of disease.

Treatment

At the present time, there is no "magic bullet" treatment for CFS/ME, and the primary management continues to be treatment of symptoms, as they arise. 

Some Patients find nutritional supplements along with rest beneficial.  CFS/ME patients should think of their energy resource a s a "bank" and be aware of how much they have in the "bank". Learning to use energy wisely is necessary!  On some days, the only energy in the "bank" is enough to walk to the bathroom and back to the bed or couch. 

A credible support contact provides useful medical information as well as compassionate listening. 

Use caution and common sense to avoid those who offer a quick fix or cure without scientific support.

Prognosis

With accurate diagnosis and proper treatments, many people with chronic illnesses can learn to manage their symptoms, thereby lessening their pain and fatigue.

Symptoms wax and wane with many patients,
Improving over time.  Unfortunately severe depression, related to coping with CFS/ME, has resulted in some suicides.

Learning about your illness with empower you to be your own best advocate!
 


Blood test to diagnose CFS comming soon within the next year.


Find more videos like this on ME-CFSCommunity.com

How can we help you?

The Wisconsin Chronic Fatigue Syndrome Association is a non-profit corporation dedicated to assisting patients.  Its purpose is to act as a clearinghouse for CFS/ME information within the state of Wisconsin: to assist patients and their families; to encourage communication among agencies, institutions, and concerned individuals; and to promoter research on the cause, cure and ultimate prevention of Chronic Fatigue Syndrome.  The association's newsletter, Lifeline, is published quarterly.  It contains information about  CFS/ME support contacts, seminars, research, treatment, and political advocacy. The newsletter has a list of books and tapes that can be ordered free of charge from the Association library. 

Services available to members include Lifeline newsletter, support group meetings. Educational seminars, and a statewide info network.  Membership is yearly, and for those with financial hardship, a waiver of dues is available.

All CFS/ME patients are encouraged to join the WI CFS Association.  If we unite to form a larger patient coalition, we can influence governmental decisions about research funding and services for CFS patients.

At a Glance

CFS/ME is not clearly understood by health professionals or by society in general.

CFS/ME varies greatly in its severity and duration. It most often affects the central nervous system and the immune system.

CFS/ME is acknowledged as a serious multisystem illness.

CFS/ME has no know test for diagnosis.

CFS/ME has no known cause.

CFS/ME has no know cure, as yet. 

CFS/ME sufferers are still met with skepticism and disbelief.

CFS/ME affects all socioeconomic groups, and people of all ages.  There is evidence to suggest that the incidence of the illness is increasing.

CFS/Me is a potentially severe, potentially disabling and potentially chronic condition.

CFS/ME sufferers who are diagnosed at the early stage of their illness, and receive subsequent understanding, support, and management, tend to the ones who make the most significant progress. 
 
 

Possible Overlapping Factors

GWS - Gulf War Syndrome
FMS - Fibromyalgia syndrome
PPS - Post Polio Syndrome
PVS - Post Viral Syndrome
MCS - Multiple Chemical Sensitivity
NMH - Neurally Mediated Hypotension
POTS - Postural Orthostatic Tachycardia syndrome
CEBV - Chronic Epstein - Barr Virus
CAM - Chronic Acute Mononucleosis

Further Information

Centers for Disease Control:
Chronic Fatigue Syndrome Hotline (888)232-3228

National Institute of Allergy and Infectious Diseases:
The National Institute of Health (301) 402-1663

CFS Program _ University of Wisconsin
Hospital and Clinics, contact program coordinator, Pat Jones, RN, (608) 265-8862

National Dysautonomia Research Foundation
NDRF, PO Box 211153, Eagan, MN 55121-2553
(651) 267-0525 ndrf@ndrf.com
 

You Can Support The Wisconsin CFS Association 
Joining the "WE CARE" program at your local Pick'n Save. Click Here to learn more. 
Become a member of the WI CFS Association http://www.wicfs-me.org
Make a donation to the WI CFS Association http://www.wicfs-me.org
 

For a packet of free information, please contact 

(608)-834-1001- Office

Wisconsin CFS Association, Inc.
747 Lois Drive
Sun Prairie, WI 53590

Email: wicfsme@yahoo.com
WI CFS Web site: http://www.wicfs-me.org
 

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