DYSFUNCTION SYNDROME
Syndrome, Chronic Fatigue and Immune Dysfunction Syndrome, The Dreaded Disease, or
whatever you want to call it. Our objective is to improve our QUALITY OF LIFE while we let
others try to figure out the cause which, hopefully, is just around the corner.
CFS IS NEITHER AN ILLNESS NOR A DISEASE BECAUSE THERE IS NO
TEST NOR KNOWN CAUSE. IT IS DEFINED BY "SYMPTOMS" ONLY. IT
IS NOT YET REALIZED OR STATED WHAT A DANGEROUS THIS
ILLNESS REALLY IS. AS FAR AS WE KNOW, THERE IS NO CURE FOR
THIS ILLNESS.DO NOT BELIEVE ANY AD OR PITCH ABOUT A TOTAL
CURE FOR CFS.
There is a lot of fear with people who have CFS. The fear what it will do to their
life styles, their careers, how they will support the family, others already don't
believe me; so, I lose my friends or spouses, how will they take care of their
children, and you believe you're going crazy. Our responses show that these are
very important concerns. This site will do everything we can to offer what little
help with these concerns as we can.
We are also concerned that too many things are being grouped into CFS/CFIDS,
because we know that since more doctors and other people recognize CFS, doctors are often
telling people with no “known problems” that they just have Chronic Fatigue Syndrome. Of course,
all this does is make it harder to find the cause or causes and develop proper treatments because
too many things create “fatigue”. It is also terribly unfair to the patient who now “thinks” he has a
known illness, where in reality the patient may have a totally different illness for which there are
known treatments and/or cures.
Most people with CFS/CFIDS know that there is an effort underway to change the name. One
woman in a “letter to the editor” in The CFIDS Chronicle wrote the following: “Before a cure, we
need to get rid of the humiliating, degrading “F” (Fatigue) word.” To us, this is
probably one of the most important comments about CFS/CFIDS that has ever been made. No one
will ever really take us seriously until we get rid of the word “fatigue” in our illness. We think you can
also get rid of the “S” (Syndrome) word in CFIDS and make it Chronic Immune Dysfunction.
There is more and more evidence today that our illness is an immune dysfunction. The National
CFIDS Foundation thinks they will find a cause soon, but more about this later.
Despite the fact that there is no known cause. treatment, or cure, WE FEEL WE CAN
STILL FIND WAYS TO IMPROVE OUR QUALITY OF LIFE. We all need to pool
our own personal experiences, information on what might have helped you to feel better or failed to
give you any improvement, what you think might have caused or been involved in your getting
CFS/CFIDS, and what treatments have or have not worked for you? People are different, so some
treatments work for some while not for others. We also find that certain treatments work in the early
or down stages which will not work later as our bodies have become tolerant to the treatments.
Your idea of the possible cause of your illness might help us categorize the information to make it
more useful to everyone.
WE ARE NOT DOCTORS AND ARE NOT GIVING MEDICAL ADVICE. YET,
WE WANT MEDICAL CARE PROFESSIONALS TO FREELY SHARE THEIR
KNOWLEDGE, CONTRIBUTE, AND LEARN FROM OUR EXPERIENCES.
EVERYTHING HERE SHOULD BE THOROUGHLY DISCUSSED WITH
YOUR KNOWLEDGEABLE AND CARING PHYSICIAN BEFORE USING IT
YOURSELF, INCLUDING VITAMINS AND HERBAL REMEDIES, AS THESE
CAN INTERACT WITH OTHER MEDICATIONS WHICH YOU MIGHT BE
TAKING.
To make this website work, we need everyone’s help. (Please remember all information
provided to this website is entirely anonymous and will be used to update this
site for the benefit of all.) We know it takes time and effort to complete the questionnaire, let
alone do anything else. We have this disease, too. and totally appreciate and empathize with your
problems. This is YOUR website. THE SOLE OBJECTIVE IS TO IMPROVE
EVERYONE’S QUALITY OF LIFE! So, please contribute in anyway you can. For
instance, let us know if you found a good, useful website we might have missed or important
information you might have read about, “heard” in a chat room, or learned from a message board.
Many hands make a task easier.
If you find something interesting or possibly useful in the website, feel free to print it to discuss with
your doctor, nurses, or anyone in the medical profession, or give it to a friend who has CFS or a
caretaker/helper to someone with this DREADED DISEASE. Please ask these people to
checkout our website and help if they can. If your doctor thinks we are off the
mark or on it, have him contact us telling us why. We all want to and need to learn.
Have them use the “QUESTIONNAIRE” or “CONTACT US” portions of the website. We want
this website to be the work of thousands of interested people, not a couple of hundred.
As stated earlier, we are going to try to create categories within CFS to see if and in what way
successful “treatment(s)” might relate to the “cause(s)” people give us. We will continue to review
data to update and improve the website as quickly as possible. Check “FLASH BULLETINS”
regularly where we will list items of interest or importance before we have time to incorporate them
into the various sections. We are more than willing to share the basic data we collect with any
medical and/or research groups working on CFS. The sooner they find a cause or causes and the
respective cures, the happier we all will be. OUR FONDEST WISH IS TO CLOSE
DOWN THIS WEBSITE BECAUSE IT IS NO LONGER NEEDED.
The rest of this website is: (1) a general discussion of CFS, (2) a general discussion on causes
and treatments, (3) Do you really have CFS? (we are concerned that people will be told they have
CFS/CFIDS when they may have a treatable disease), (4) observations on causes of CFS, (5) what
we learned about CFS causes from heart experience, (6) itemized listings and discussions of
drugs, vitamins, herbs, and treatments which have and have not worked from the experience of
people who actually live with CFS (not merely studies), (7) regimens for management of CFS, (8)
recommended websites for general information (9) a bulletin board (as soon as possible) for
members to post questions and get answers, hopefully, (10) compiling of detailed information about
CFS that, hopefully, you will furnish us, and (11) “flash bulletins” for the newest posted information.
Again, please join us in our quest to improve the QUALITY OF LIFE of all people who are
currently suffering from Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction
Syndrome/Myalgic ENCEPHALOMYELITIS.
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