Fibromyalgia Community

Your study did come up in a post, but you need to really read the poll results carefully. Only three people responded, two said yes, and one said no. One was me.

Take care, Annette

Hello Beth....MiMi in NC...I have participated in studies before...I was in one where I took either a placebo or Ribrose (I think I took the placebo-since I could not feel a difference)...I had to go into the office each month and several times had tests done...(urine and blood) So I am interested in knowing more about this study.

What exactly is the study about? Is it just for local people? Or will other doctors also be participating in other states as well?

I am assuming people would want to know more about this and just how it may or may not work before deciding whether or not to do it....we have people all over the place and I know that I could not/would not drive to Alabama to see a doctor to be in some sort of study.

I do hope that you will soon find something that will help you cope better.

Take care and good luck.


MiMi

Hi MiMi This study is the most hope I have ever had since this nightmare began. The first thing is a simple test to check your esophagus. Second is an invasive surgery to take a biopsy of your esophagus and stomach area. You have to agree to be in this study bc of surgery etc.. Start taking meds after surgery. I will check tomorrow to find out how much info I can disclose. There are 140 of us in study. The next study, nationwide, will not call for surgery etc, bc meds are working and they can continue. I think meds are not disclosed bc people desperate like us would try to get them. Dosage has to be specific for your body. If you are newly diagnosed, much easier to treat. For people like us, he says I will start seeing a minor change in 3 months and major change in 6 months. But guess what, I can already feel a change!!!!! Thank God!!! I only ask in a poll if people were interested bc I know how frustrating it is when we have tried over and over to find help. I would love to tell everything but I don't want to get in trouble and I def don't want to get kicked out of study!!! I can promise you when I was first ask by my doctor if I was interested I said ok I will try but I promise you I was not excited. This doctor did not go out looking for patients but was took patients only on the word of other doctors who had patients that seem to fit what he was looking for. He gives pain meds and you know I have said many times I can't make it without them. I did not mean to write a novel or beat around a bush. I will call and ask if I can disclose or have to wait until 2013 study begins. As you said, some will get placebo and some the real meds. Praying this Will be the cure of this nightmare or whatever name each person has for it!! Take Care! Beth

OK....Beth...this is a FM study....but they had to check your esophagus and stomach area first....really? I guess I am not exactly following you on this.

And you also say that pain meds are provided..so some people will get pain meds and some will get the placebo...interesting study...

I hope you will provide more information about this when and if you can.

I am glad that you can already *feel* the change...I hope that it will continue for you. That will be work your effort...and then when the study is over will you still get to stay on the medicine or what then?

Thanks for sharing...


MiMi

Mimi Pain meds are not a necessary part of study. If a patient does not need them or against them, that is fine. I put that in so if anyone else should read this and they also need pain control, it was ok. The meds for FM are in different families of drugs. I will def send you a message if I am allowed to disclose. Also, in the beginning, I filled out numerous pages concerning my past history.