Working together:  CFIDS support groups

In each issue of The CFIDS Chronicle, we publish an update on the activities of CFIDS support groups and their leaders.  Support groups worldwide are doing some incredible things, and the truly amazing part of their accomplishments is that they are being made by a group of sick people.  They work together towards a common goal:  to conquer CFIDS.

For some groups, the primary goal is to help members live and cope with CFIDS.  They provide the support and the comfort that can be missing from family and friends.  In other groups, the goal is educating health-care professionals, government officials and the public in general.

Are these the only objects for CFIDS support groups?  No.  There are many, many more.  Groups can start with one agenda and, in time, find they need to change direction.  This can be the result of many different influences:  size of the group, how long the group has been in existence, composition of members (newly diagnosed vs. long-term sufferers) or group members' interests.

In upcoming issues, we will feature articles by support group leaders.  After all, they are the real experts on working together.
Kris Hopkins, Support Network Services Director

Mainstream PWCs

By Leslie Pallone

In recent CFIDS Support Network (CSN) bi-monthly conference calls, it has been noted that attendance in some support groups has dropped off.  What does this mean?  I pondered.

Five years ago when I contracted CFIDS, I searched and searched for a doctor who could identify what was wrong.  Many CFIDS patients have had the same frightening experience of being so sick, having so many symptoms and body malfunctions and finding no one who knows why or what is happening.

Finally, when a wonderful doctor made the diagnosis of CFIDS, there was a sense of relief.  Then he told me there was no cure, and my nightmare was solidified.  However, I was one of the lucky ones who had a physician who believed that over time, the immune system could be rebuilt holistically.  It would take a regimen of organic eating, nutritional supplements, gentle exercises (yoga, tai chi), homeopathy and acupuncture.  In the meantime, I was barely functional, living in a world that offered virtually no understanding or support.  With a weakened body and overspent emotions, I set out on a lone path---a "healing journey."  This was my plight, alone with all the early concerns of maintaining a home, raising a child and finding resources to sustain existence while unable to work.

I had never been part of a support group, but as most of my healthy friends and family drifted away, I hesitantly entered.  Within a short period of time I found these new faces becoming my best friends.  We wept as we realized we'd found others who knew---who understood!  We exchanged stories of how our illnesses emerged, how doctors ran us through endless tests and how we could barely function due to the range of symptoms.  Support group members were our lifelines.  They were so precious to us!

As time went on we discovered possible answers.  Each of us tried a different treatment path, some with benefits and some with setbacks.  Our support group entered a new phase---the quest for healing and cures.  Our hopes were high as we feverishly exchanged information on new treatment programs and new supplements.  Instead of a cocoon for the despaired, our group became a source and wealth of information.  We carved out a little community where we could safely exist without the insults of the general public questioning our sanity.  Life became hopeful and comfortable, or "as good as it gets" with CFIDS.

With time, some members regained enough functioning and support to mainstream their lives.  Perhaps not mainstreamed into the world at large, but mainstreamed out of the CFIDS community, they resumed a functional life.  It is at this point, I believe that group membership drops off.

Is this a problem?  In a sense, it is a very good sign.  In another sense, however, it is regrettable.  When I think about how horrendous my life was and in some ways still is, I feel a strong sense of commitment to conquering this disease or at least to making life with CFIDS a dignified experience with proper societal awareness and ample social supports.  I never want to see another person experience what I had to!  This doesn't mean I will want to attend every support group meeting.  It is unhealthy to drown in an echo of aches and pains, whining and magic bullets.  Instead, it is healthy to want to move on.

I don't believe God would have put me through such an ordeal just to "get over it" and forget about it.  No one should have to experience the torment of this disease and our society's reaction to it---of this I am sure down to the marrow.  What should I do about it?  I can't begin to know this.  What I do know is that if I open my spirit to God, I believe this will guide me through the rest of my life and serve (as He sees fit) in the healing process.  I don't have to know the way, only to be open to it, to not forget and to be willing to become part of a larger CFIDS support group---the one with a life-long membership---and all it will take is heart!  I hope that all who have ever experienced CFIDS will remain a support group member in this sense.

Leslie Pallone is facilitator of the Central Florida CFIDS Support Group.