What Fibromyalgia/Chronic Fatigue Syndrome Information is Important to You?
When I first started this job I asked for your input and feedback, and the things you had to say really helped me get off to a good start. It's now six months later, and I'm coming to you for input once again. What information would you like to see here and in the weekly newsletter? What topics are most important to you?
The more I know about what you want, the more I can focus on those topics. You wouldn't believe how much information is coming out - on a daily basis - about fibromyalgia and chronic fatigue syndrome! So far, I've published 70-some articles and about 80 blogs, and I still have about 60 topics on my to-do list. I add several more to it every week.
So this is your chance to help me prioritize, so I can get the most important information to you first. If you want to know more about specific things or categories the poll doesn't cover, leave a comment!
Comments
I just feel like the general public doesn’t take this condition seriously. How to cope with that??! A person doesn’t want to dwell on their condition and seem like they want sympathy, they just want people to know that it is a real condition. How close are they to having a blood test, or some other kind of test, to PROVE a person has this condition. I would be FIRST IN LINE! THANKS ADRIENNE!
I belong to a FM support group & post your column. It’s easy to use & very informative. Thank you.
Thanks for a wonderful place for support and info., you have really helped me in the last 6 months with your newsletter. Keep up the great job!
Thank you for taking the time to reach out to others. Your efforts are greatly appreciated. Even though there has been progress in the medical community with recognizing fibromyalgia, it still seems as though “in general” it is still a condition that is stereotyped and unfortunatley only truly deeply recognized and understood by those who suffer from it. Fibro sufferers are not looking for “sympathy” for themselves …on the other hand they share great “sympathy” and great compassion for others who can truly understand their suffering and difficulties in hopes that by reaching out to others like you have will inspire future progress in seeking medical care and treatment. Once again, thank you for all of your efforts.
Thank you to all that believe and keep going on, with this (syndrome??) It truly sucks, that in yr 2008, we have to live with this kind of stereotype, that not only hurts the ones living with it, (pysically, but emotionally/mentally)but hurts the ones we love, that watch us live with such unbelievable chronic pain~!! that’s if you are lucky enough, to have someone in your life, that actually believes in “fibromyalgia”~!! As for the Doctors out there, that don’t believe, “YOU MAY KISS MY LILY WHITE ASS”~!!!!
To my Sister “ili” and my longest and OLDEST (lol) friend, Mare, thank you for seeing that i too had fibro~!! i know now, that i have been living with this for at least 19 years, but withput you telling me to get checked for it a couple of years ago, i NEVER would have known and i would have kept believing the doctors, that told me, ” it’s all in your head, or it’s gynelogical”~!! SO THANK YOU ILI AND MARE, I LOVE YOU ALWAYS XOXO BIRDY