Chronic Immune Dysfunction Syndrome

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS; also known as Myalgic Enchephalomyelitis, Chronic Fatigue Activation Dysfunction Syndrome, CIAS, Chronic Epstein-Barr Virus, or CFS) is a debilitating illness. The cause is unknown.

There is no known cure. Some people with CFIDS recover spontaneously, typically after being ill for several years. Many never recover.

So, does this mean you're just tired all the time?

No. It's far more than that. To oversimplify, when a person has CFIDS, their body has lost the ability to recover from exertion - although there's much more to it than simply fatigue.

The fatigue associated with CFIDS is extreme, much more severe than healthy people ever experience. Tiny levels of exertion, either physical or mental, can cause deep exhaustion lasting days or weeks.

In addition, people with CFIDS typically suffer from an overactive but ineffectual immune system and a variety of other symptoms, including headaches, sore throat, muscle and joint pain, and cognitive problems including short term memory loss and loss of ability to concentrate. A person with CFIDS can lose as much as 40 IQ points. It's common to feel sick - as though you've got the flu - all the time, and to frequently become severely ill after the smallest triggers.

Many other symptoms are associated with CFIDS; no two people have the same combination of symptoms.

Although for many years CFIDS was not taken seriously by government agencies (primarily the National Institute of Health's Center for Disease Control) and many in the medical community, it is becoming clear that this illness is one of the most debilitating illnesses known. Although it rarely causes death, it is said that some people with CFIDS are as sick as people with AIDS in the last two or three months before death.

What's it like when you've got it?

If you are not intimately familiar with CFIDS, I suggest you read my detailed description.

Peggy Munson has written a book called Stricken, about the impact of CFIDS on the lives of many people who have it, and has also written eloquently about its impact on her own life. I strongly recommend her 2002 CFIDS Awareness Day Letter and the excerpt from Stricken, both at her Stricken Home Page.

An articulate account of the impact of CFIDS on peoples' lives can be found at Michelle Akers' Web site. Michelle is an Olympic athlete who is living with CFIDS.

What about medical treatment? Can't you take something?

Unfortunately, there are as yet no known effective medical treatments. Some people improve to some degree, at least for the short term, by taking mild stimulants, such as certain anti-depressants, but others get much worse on such regimes. Many people with CFIDS find that over the long term almost all drugs aggravate their symptoms.

The same is true of stimulating compounds such as Ginseng or even caffeine. Such substances can give short-term relief to some people, but at the cost of serious worsening of symptoms over the long term.

Where can I get more information?

If you or someone you know has CFIDS, I highly recommend that you get on the Internet CFIDS mailing list. I've included complete instructions for signing on.

I'm currently working with Dr. Poesnecker, of Healing Research Centers. Dr. Poesnecker has a unique and, in my opinion, very plausible theory about the etiology of CFIDS (see his Chronic Fatigue pages), and claims to have been treating patients successfully for over 30 years.

The CFIDS Association of America has an excellent introduction to CFIDS. The Cheney Clinic has an excellent list of other resources on the net. The St. Johns University gopher site is packed with information as well.

Some research by the Collaborative Pain Research Unit Information Services, a research group in Australia associated with the University of Newcastle, has led to the identification of some urinary markers for CFIDS.

In addition to providing new directions for exploration of possible treatments, widely accepted laboratory markers could make a dramatic difference in the quality of life and chances of recovery for many people with CFIDS. Disability insurance companies will no longer be able to capitalize on the current lack of definitive CFIDS-confirming laboratory tests by denying benefits to very ill people who desperately need them, and physicians will no longer be able to dismiss very ill CFIDS patients as merely "depressed".


For more information about CFIDS, try the Web sites below.

  • The Chronic Fatigue page of the Healing Research Centers
  • CFIDS Association of America
  • The Cheney Clinic
  • St. Johns University CFIDS Repository
  • Collaborative Pain Research Unit Information Services
  • Peggy Munson's Stricken Home Page
  • Michelle Akers' Web Site

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