CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is known by many names in both the United States and the world--Chronic Fatigue Syndrome (CFS) in the United States and worldwide as Myalgic Encephalomyelitis (ME).
No matter what we call it, CFIDS is a serious and often completely debilitating disease that affects at least 200,000 to 500,000 adults in the United States alone.
The word fatigue means different things to different people. We have all felt the tiredness at the end of a day working or taking care of children--this is not the tiredness that is such a hallmark of this disease. We are talking about a tiredness whereupon when you wake in the morning, you feel like you have just run a 20 mile competitive marathon (or participated in several events in a rodeo) despite the fact that you have just spent the last 8-10 hours sleeping!
But despite the name--fatigue--that is not all there is. Fatigue is only one of the symptoms--many others are required to be present before a diagnosis can be made. In fact the symptoms of this disease often overlaps with the symptoms of Multiple Sclerosis, lupus, lyme disease, etc.--diseases that are taken much more seriously in our society.
Currently there is an effort in the United States Congress to change the name of this disease as many in our government have realized that the name itself is a serious disservice to those who suffer from this disease. As yet, it is unknown what will be the new name for the disease, although contenders include names that honor Florence Nightingale and Charles Darwin (both believed to have suffered from this disease or a similar disease).
May 12th is the International CFIDS Awareness Day. On this day (and other days as well), we would like our friends and family to speak up and out about CFIDS and how it has affected their lives. Please contact your local support group or the CFIDS Association of America (in the United States) to see what is happening on that day in your area.
Dealing with CFIDS is never an easy thing. My Mom calls it a "sneaky" disease because she can never tell just by looking at me whether I am feeling bad or not til I open my mouth and nonsense comes out.
To help me deal with just the day-to-day getting through, I have read and re-read some amusing anecdotes and stories written by and about other PWCs (People With CFIDS). Please bear with me as this area is definitely under construction!
See the humor page, then submit (cinpet@geocities.com) some humor yourself.
| Advocacy | |
|---|---|
| Action for CFIDS/M.E. | Another CFS advocacy group |
| Start Planning | An old, but good article on CFIDS Awareness Day |
| WECAN | Internet CFIDS Advocacy Group |
| YPWCnet | Young people with CFS |
| Associations | |
| AACFS | The American Association for Chronic Fatigue Syndrome |
| CFIDSAA | The CFIDS Association of America's Home Page |
| Communication | |
| CFIDS.NET | Information on accessing the Internet through the CFIDS Association of America |
| CFS-IRC | Information on accessing the CFS Internet Relay Chat group |
| Databases | |
| CFS Database | A lot of CFS Information |
| Healthworld-CFS | CFS Database |
| Mental Health Net | CFS Resources |
| Fibromyalgia | |
| Fibromyalgia Information | Information about a disease that is very similar to CFIDS. |
| Government | |
| Asst Secretary of Health | Letter to media from Dr. Philip Lee |
| CFS Fact Sheet | Social Security's "required" tests for CFS claim? |
| U.S. Center for Disease Control | CFS information inside website |
| Medical | |
| AMA Physician Select | A website where you can search for information regarding a physician practicing in the United States |
| Chronic Fatigue Unmasked | An interesting approach to CFS from a Pennsylvania doctor |
| CFS Online Diagnosis | Do you think you may have CFS? Find out here |
| CFS/FMS Good Doctor List | A list of doctors who treat CFS/FMS patients listed by the patients themselves |
| Fibromyalgia Form | A form for your doctor to fill out that assesses your condition/limitations. |
| MMPI & CFS | MMPI results on PWCs (People with CFIDS) NOTE: 1/13/98 link not working. Note on main page said site was temporarily down. |
| Sapient Health Network | Get information about CFS/FMS tailored to your symptoms & / or interests |
| SPECT Scan CFS | A SPECT scan of the brain of a CFS patient |
| Research | |
| CHROME | Case History Research on Myalgic Encephhalomyelitis (UK Study) |
| 2-5A | Congressional Briefing on Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) |
Becoming totally disabled is never something anyone plans on doing. And even when you do some planning ahead (saving money for a rainy day, buying health/disability/life insurance), it doesn't seem to be enough when reality sets in.
Even if everything falls exactly into place immediately, most people only are able to realize about 2/3rds of their income before becoming totally disabled (through insurance, Social Security, pensions, etc.). This income is lower if you had no benefits at your job and/or failed to work long enough to qualify for Social Security Disability (for example, college students usually fall into this category).
But what if everything doesn't fall into place immediately?
That is the situation that some people face when they become totally disabled. Especially if they become disabled by an unknown or little understood condition. For those people, applying for disability benefits (private and public) can be a nightmare and an exercise in frustration. Some people wait for years and have to take their cases to court before they begin receiving any benefits. In the meantime, they rely on their spouses, other family, friends, and, many times, public assistance to make ends meet.
In the hopes of assisting some of those people out there who are just beginning the process or already in the process of applying for benefits, "The Legal Bite" has some information to help you during this process. (UNDER CONSTRUCTION)
This CFS Ring site is owned by Cindy Peterson. Want to join the CFS Ring? |
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