Expert: Suzan Jackson - 12/21/2007

Question
I am 20 years old and I have had CFIDS since birth.  I was diagnosed with chronic mononucleosis at age three and my mother has had CFIDS since childhood.  Your background struck me personally because my mother's name is Susan Jackson (very close) and I know how hard it is for her to have a child with the same disease.  She is constantly worried about my future but we feel all alone in trying to find a cure for us both.  During my youth the schools I went to were not understanding when I needed to get P.E. exemptions, exemptions from vaccines, or had to miss a lot of days.  Now that I am in college it is easier to handle (more flexible hours) but I don't feel old enough to be accepting of my disease and the cruel reactions I often get from people when they act like I am exaggerating/lying about my illness.  My mother's health is deteriorating every day and I am afraid that she may be suffering from other diseases as well but no doctors seem to want to do the appropriate testing.  She has read every book and magazine available on chronic fatigue and associated illnesses but we don't know where to turn next.  None of the treatments we have tried help at all and all doctors tell me is to take vitamins and exercise!  I would love any advice that you could give or even any support.  I have never met anyone else remotely near my age with this disease, and there are no real support groups in my area.  I'm so sorry your sons are suffering from this illness but I am glad that you are trying to make a difference and letting others know that young people can be affected as well.

Thank you so much,
Lindsay Jackson

Answer
Hi, Lindsay -

Thanks for writing.  It's amazing that your Mom's name is also Susan Jackson and that she also suffers from CFS.  Strange coincidence!

I'm so sorry to hear that you and your mom have both suffered so much.  I can't imagine having CFS your whole life.

I think you are probably right about your mom. Experience with CFS has shown that there are often overlapping medical conditions present, either co-existing with CFS or caused by CFS.  It sounds as if you both need a thorough work-up by a CFS expert doctor.  My own family doctor and my sons' pediatrician have both been very helpful and supportive for us, but we have still sought out CFS specialists who have helped all three of us tremendously.

I know of CFS specialists in NY, MI, CA, NV, NC (and maybe others as well).  If you let me know which region you live in (I'm assuming you're in the US?) then maybe I can help you find a doctor nearby who could help you.  If you'd rather not mention your location here, please feel free to e-mail me directly.  You can go to my blog, www.livewithcfs.blogspot.com, click on "View my complete profile" on the left-hand side, and you'll see a link to my e-mail.

I completely understand what you're saying about support, too.  Finding other people with CFS that I could talk to has made a world of difference to me.  I have three ideas for you to help find other people your own age with CFS to connect with:

1) CFIDS Association.  You and your mom might already be members, but the CAA has a wonderful section of their website devoted to youth with CFS (including college-aged!).  Go to www.cfids.org/youth.asp to see all of the resources.  Click on Other Resources on that page (left-hand side) for a list of support groups, pen pal groups, and more, all focused on kids, teens, and young adults.

2) Pediatric Network - This is a wonderful group for parents and kids in families affected by CFS.  The website at www.pediatricnetwork.org includes lots of great information and resources, including a very active Forum (message boards).  The Forum includes sections for parents, as well as sections for teens and young adults.  In fact, one of the founders of the Pediatric Network, Rebecca Moore, is a young adult like you who has had CFS since childhood and is now in her 20's and attending college.  You have to register to participate in the Forum, but it's free.  You'll find a whole community there just like you!

3) Local Support Groups - When you join the CFIDS Association (CAA), they send you a list of local resources in your area.  I highly recommend joining, if you haven't already.  Their newsletter is an excellent resource for keeping up with the latest research and for hearing about other people like yourself.  Unfortunately, the only support group in my area had disbanded by the time I heard about it, but many areas have very active support groups.  You can join CAA at their website, www.cfids.org.

I hope some of this has been helpful.  Please let me know where you live, and I'll try to help you find a local CFS expert.  I'm going to sign off of AllExperts today for the holidays, but feel free to e-mail me directly any time.  Best of luck to you and your mom -

Sue Jackson
www.livewithcfs.blogspot.com