May 12 has been chosen by many national groups as International Awareness Day for Chronic Fatigue Syndrome. May 12 is the birthday of Florence Nightingale, who had an undiagnosed, debilitating disease for many decades. Despite her constraints, Nightingale was able to found the International Red Cross.

The concept of May 12 as International Awareness Day was developed by Tom Hennessy. He has now
founded the RESCIND organization (Repeal Existing Stereotypes about Chronic Immunologic and Neurological Disorders) which promotes solutions for CFS, fibromyalgia, multiple chemical sensitivities, and Gulf War Syndrome. RESCIND can be contacted at 9812 Falls Road, Suite 114-270, Potomac, MD 20854, USA, fax: (after 6pm ET) 1-301-983-5644, Internet: MAY12@American.edu.

The Butterfly is the symbol of the M.E./Chronic Fatigue Syndrome Society of Victoria Inc. in Australia and was also used there for the International ME/CFS Awareness Day badges.

This is a picture of me taken seven years ago. I usually don't take pictures of me because I'm usually the one behind the camera taking the pictures, but I had a great opportunity to have a professional photo shoot and the end result was this picture. I don't look like this everyday....who could? But I now have a better understanding of why models and actresses look so good in pictures and movies...they have professionals doing them up every day. Plus who would ever guess from this picture that I have CFS(Chronic Fatigue Syndrome). I think that's the problem with having one of the so-called "Invisibile Disabilities" - you can't see it so therefore everyone thinks you don't have anything. If you can't see it - you must be Okay! Hundreds of thousands of us are living proof that that is not true. There are hundreds of "Invisible Disabilities" and not one of them shows but that does not mean that we are not disabled.

In creating this site and gathering all the CFS material and links, I discovered many things. Here are a few things that I learned on my journey of the CFS world (links and home pages of other CFS sufferers).

1) I learned that although we are all very individual people, we all share a common bond - CFS. It's amazing reading other people's stories and see how similar they all are. We have so much in common but I guess that goes for any disease, illness or disability. In putting together this site, I am using some of the material gathered from other sites because if someone can say it better - why would I try to top it?

2) Another discovery was to learn how we are all not only struggling with this illness ourselves, but we are all desperately trying to make others aware of it and help them understand it. Why?

I guess Lindsey said it best again (so why try to top what she said):


"One of the hardest things about CFIDS that I've had to deal with is how others deal with my CFIDS. The majority of the people I've encountered stare at me blankly when I tell them I have CFIDS; they've never even heard of the disease, let alone do they know anything about it. Even after three years, I still don't quite know for sure how to respond to this...how do you say enough to explain the disease and your situation to someone, without saying too much? One of the hardest questions I have to answer on a day-to-day basis is "How are you?". Is it better to do the polite thing, lie, and say "Just fine, thank you!"... or to just be honest and say "Rather *insert expletive here*"?
On the other hand, when someone does know something (or thinks they know something) about CFIDS, it can be almost as bad. Because we still don't know exactly what causes CFIDS, it tends to have a reputation as not being very credible - it's "the yuppie flu", or "hypochondria", or "just in your head". Any person who has lived with CFIDS can tell you that all of these are NOT true...CFIDS is a very, very real disease.
I look like a perfectly normal, healthy person. On one of my good days, if you saw me walking down the street you would never be able to guess that I have a chronic illness. This is a mixed blessing...on one hand, I'm never discriminated against for looking disabled or handicapped. On the other hand, it is very difficult to get people to believe that I'm sick.
We need to teach people what CFIDS is - a very real, very devastating disease. The more that people know, the more that people living with CFIDS will be believed and receive the help they need."

Lindsey continued with the 5 Things she wants you to know about her and CFIDS. I think she speaks for all of us when she says:

Before you read anything more on this page....please read...

5 Things I Want You to Know About Me and CFIDS

# I have a chronic illness. By many definitions, I am considered handicapped or disabled. I accept this.

# CFIDS is a part of who am I...but it does not make me who I am. At times it controls my body, but I will no longer let it control my life. As someone once said so brilliantly, "I may have CFIDS...but CFIDS doesn't have me".

# I am not bitter. I am not angry. I am no longer depressed.

# I don't want anyone's pity...I don't feel sorry for myself, and I don't see why anyone should. I believe that I'll never be given more than what I can handle...and that anything that doesn't kill me outright will make me stronger. I have become a stronger person because of this illness. Because of this illness, I have found out where my priorities stand...I have found out how I want to live my life. I feel lucky.

# The best feeling I have ever gotten from being online is when someone e-mails me and says, "I read your CFIDS page, and I learned something". That's why this page is here. Nothing makes me feel better than knowing I have educated someone else...someone who will now no longer discriminate against me, or not understand me, or doubt my illness.

I guess that's all any CFS person wants - to educate those who don't have it so you'll not only know more about CFS but will understand us and won't doubt that we are ill.

We've all had experiences with others and their lack of knowledge about CFS and each of these experiences leaves it's mark. I remember parking at a mall (I wasn't having a good day but I needed groceries) and I pulled up, parked in Disability Parking, put up my Disability Parking Permit and got out of the car. A young man about 35 years old was standing at the entrance and when I walked by him he said "Hey, don't you know that you're parking in a disability parking spot?" I turned and said "Yes, I know and I have a disability parking permit".

He then made a snide remark "Yeah, right! Who did you borrow it off of?". I was hurt by this but went inside and picked up the few things I needed. When I was returning to my car, he was still there so I thought that perhaps if I explained about my illness - he may be less judgemental about others, so I approached him and said "Excuse me, but are you aware that there are many disabilities that are called 'Invisible Disabilities' because although the person is disabled, it does not show. There are hundreds of disabilities that the government states are legitimate and thus provides Disability Parking Permits to them. They don't give them away and they are difficult to get as a doctor has to fill out a form and it must accompany your application for a permit". He just acted like I didn't exist and I realized that I was going to change his mind about me or my illness, so I left. We go through similar experiences every day of our lives.
We must put up with the rude and insensitive comments because we aren't missing a limb.

I do not always park in Disability Parking, especially if I'm having a good day. I don't abuse my permit and perhaps take a spot from someone more disabled than myself.
I will usually park in a normal spot (as close to the store as I can) when I'm having a good day and am able to make that walk. It is only on bad days that I park in disability parking spots because that means that the walk is too much for me and therefore I use it. I get looks from everyone when I do use them and they aren't compassionate looks - they are looks of disgust that I would take a spot reserved for disabled people (simply because I don't have missing limbs or a wheelchair).

There are many many CFS sites and home pages of CFS Sufferers and it would take a great deal of time to visit and read them all, but please do take some time and read up on CFS and visit some home pages and see their stories.

It takes a great deal of effort and energy to create a web page (especially with CFS) so don't let all of our efforts be wasted. Visit, read, learn and show your appreciation by signing their guestbooks and letting them know you were there.



May 12th is CFS Awareness Day but everyday should be a day when you take the time to learn about CFS. This disease is spreading faster than AIDS and no one is immune from catching it. Maybe someday, someone you know or a family member may end up with CFS and you'll be grateful (and so will they) that you took this time to become aware and gain some knowledge regarding this devastating illness.