Expert: Candy - 12/7/2009

Question
Dear Candy

I am hoping to get information relating to whether or not Chronic Fatigue is a ‘real’ illness. I am a student at the University of Canterbury in New Zealand and was asked to think of a controversial question to research and discuss. I have recently been diagnosed with Chronic Fatigue and have already found that there is a lot of argument as to whether or not Chronic Fatigue is a real physical illness or not and this made me think that it was an appropriate question to ask. I would be grateful for any information you could provide.

Sincerely
Georgia Bela Wilcox  

Answer
CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) is DEFINITELY a very real illness.  While debilitating fatigue is the hallmark of chronic fatigue syndrome (CFIDS), a feeling of weariness is not, by itself, a sure sign of this illness. People with CFIDS have a combination of symptoms, including swollen glands, muscle pain, and confusion. The symptoms may come and go, vary in intensity from mild to incapacitating, and last for months or years. Exercise often makes CFIDS worse.

People with CFIDS describe it as feeling like a terrible case of flu that never gets better. A typical victim, previously well and active, suddenly comes down with a flu-like condition. Then, instead of getting better, she develops a chronic illness that includes a severe, prolonged fatigue.

CFIDS is not well understood: Although it does not appear to be new, it was only officially described by the Centers for Disease Control and Prevention in 1988. Research into its causes and treatments is just beginning and no clear answers have emerged. The condition goes by several names: You may hear it called chronic fatigue immune dysfunction syndrome (CFIDS), chronic Epstein-Barr, or myalgic encephalomyelitis. Most disturbingly, you may still find doctors who do not believe the syndrome exists, or doctors who believe CFIDS patients are actually suffering from depression, or even faking it.

It is not even certain how many people have the illness, although new studies put the estimate at more than 500,000 Americans. Most people diagnosed with CFIDS are young adult women, but the condition occurs in people of all ages and races and of both sexes. CFIDS is not contagious.
Causes of CFIDS

Current thinking is that CFIDS probably has more than one cause; research generally falls into three areas: the nervous system, immune dysfunction or a viral cause. Experts pursuing the viral theory say it is not clear whether there are several viruses that each happen to cause the same syndrome, or whether the disease results from a combination of viruses working together. Some research shows that people with CFIDS may have an abnormal response to viruses in general. Some viruses, such as Epstein-Barr and human herpes virus 6, have been considered as possible causes, but there is no conclusive evidence for any single virus.

Recent research into the immune dysfunction theory has found that cytokines, an immune system component normally active in fighting infections, may be involved in CFIDS.

Two other areas under investigation are a link between CFIDS and allergies and the relationship of CFIDS to inflammation of the central nervous system.

Studies are now finding that some people who fit the strict criteria for chronic fatigue syndrome may also have a condition known as neurally mediated hypotension (NMH). Such people experience a dramatic drop in blood pressure after as little as 10 minutes on their feet, and suffer many of the symptoms of chronic fatigue. Treatment for NMH has yielded an improvement in CFIDS symptoms in at least one study. Researchers think that a virus or infection may cause the injury to the central nervous system that's responsible for this disorder—which may explain why so many patients report a viral infection before developing CFIDS.

Diagnosing CFIDS

Since there is no one conclusive lab test for CFIDS, diagnosing the syndrome means ruling out all the things it isn't —a very difficult task. For example, CFIDS shares symptoms with medical disorders such as lupus, multiple sclerosis, and Lyme disease, as well as with depression, so these conditions must all be ruled out before CFIDS can be seriously considered.

To be diagnosed with CFIDS, a patient must, for at least six months, meet two major criteria, have four or more of a group of symptoms commonly associated with the disease and test positive for the Epstain Barr Virus.

The two major criteria are:

   * New onset of persistent fatigue that reduces activity 50 percent, and does not get better with bed rest

   * Fatigue not explained by other medical or psychiatric illness

   *Test positive for the Epstein Barr Virus

Potential symptoms include:

   * Sore throat

   * Painful lymph nodes

   * General muscle pain

   * Prolonged fatigue after physical activity

   * Generalized headaches

   * Pain that moves from one joint to another without swelling or redness
 
   * Forgetfulness, excessive irritability, confusion, or inability to concentrate

   * Sleep disturbance

Treatments for CFIDS

There is no proven cure for CFIDS. Treatments in current use only help relieve symptoms. Most doctors recommend improving general health and physical condition. If you have CFIDS, you should eat a balanced diet, get adequate rest, and exercise as much as your condition allows—walking is most frequently recommended.

You must also learn to set limits and pace yourself, since stress can often make the symptoms worse. For many people, lifestyle changes may be necessary. For example, you may need to take a job closer to home, or switch to a less stressful occupation. Many people with CFIDS cannot work full time while they are ill.

Pain management programs may help with severe muscle pain or headache, while sleep disorders can often be treated at a specialized sleep disorder center; relaxation training may help reduce stress; some alternative therapies, such as acupuncture, aquatic therapy, chiropractic, massage, and yoga, have helped some patients. Support groups and counseling may also be helpful, while certain psychotherapies, such as cognitive behavior therapy, have helped some patients cope.

Drug Treatment for CFIDS has met with mixed results. There are reports of success in treating symptoms of CFIDS with a number of products, including antiviral drugs, antidepressants, anti allergy treatments, blood pressure medications, and medications that boost the immune system. But few drugs for CFIDS have gone through formal clinical testing, and none have shown clear benefits. Recent tests of antiviral agents such as acyclovir (Zovirax), and immunoglobulin (Gamimune, Gammagard, others) have been inconclusive, working no better than dummy pills in some tests.

Some doctors use pain relievers, non-steroidal anti-inflammatory drugs, the newer prescription medications called COX-2 inhibitors (Bextra, Celebrex), and injections of gamma globulin (Gammar), vitamin B12 and magnesium for relief of general symptoms.

Support Groups

Because chronic fatigue syndrome is not well understood, you may want to be in touch with the national organizations that offer the latest information on the illness. There are also patient organizations that can help you find a support group. Many people with CFIDS find these groups helpful in dealing with the effects of the disease on their lives. For information, check the Directory of Support Groups.

Outlook

The good news is that CFIDS does not seem to get worse over time. Often the first episode is the worst, with relapses becoming fewer and milder over time. Typically, symptoms come and go, and worsening symptoms are rare. Some physicians have observed that patients whose symptoms began abruptly following a severe viral illness tend to recover completely after six months to a year, while patients whose problems developed slowly are likely to experience symptoms for a longer period of time.

However long it takes, people with CFIDS generally do tend to improve, even if they do not recover completely. Most people with CFIDS make significant changes in their lifestyles while they have the disease, and learn to accept new limits. Some people recover spontaneously in a few weeks or months.

If it is determined that you have CFIDS there is one very important thing to remember.  You are not alone.  Many people suffer from CFIDS.  Find a support group because talking about what you are going through with others who are also going through it is a huge help.

The following are web sites to organizations that can provide you with more information.

http://www.cfidsselfhelp.org/

www.cfids.net/

www.aacfs.org/

www.ncf-net.org/

www.cfids.org

www.co-cure.org/cocurering.htm

members.tripod.com/pwcfriends/index.html

www.sunraysupply.com/

www.cfidsselfhelp.org

www.cfidsers.org

www.supportalk.com/detail-1244625.html

virtualhometown.com/dfwcfids/doctor.html

I hope this answers your question.  If you have any more questions please feel free to ask.  I wish you the best of luck.