Thursday, November 05, 2009

If accepted...

I'm going to participate in a research study on one aspect of ME/CFS by Dr. Nancy Klimas at the U of Miami Medical Center. I just filled in the paperwork they'll use to decide whether to accept me or not. This study involves 4 trips to Miami over a two year period, a thorough evaluation first visit (physical and cognitive), wearing a bracelet for two weeks after each visit to measure activity level and keeping a short online journal, provided by them online, of how I feel each day. This test is for genotype research that they're doing but they save your blood and when they gear up for a study on the retrovirus, my blood, with my permission will be used. They pay 20 dollars traveling expenses so gas will be paid for, which is nice.

Traveling is difficult for me, even though this is tops an hour and a half down there and my husband will drive while I stretch out in the back seat, but I want to do this since Dr. Klimas does outstanding research. It also will give me a feel of what they do down there since she does treat individual patients, too, but with a very long wait list. Just to be able to see her for a consult off in the future would be really helpful.

Dr Robert Keller, the immunologist who treated me for 10 years down in Hollywood, FL, before his untimely death this year, was friends with Dr Klimas and her fellow researchers, so that already validates my diagnosis for them.

Now to wait...

Pris

12 comments:

Olga/Maddie said...

I do hope that you get accepted for this particular study.

And if so, I know that your participation will be of great benefit to both yourself and others who are in the same situation you are in.

Hugs, hugs, and hugs. *HG*

God bless and take care. Bye, :)!
Olga/Maddie

Maggie May said...

Here's hoping...

Jo said...

Yes, fingers crossed . . .

Pris said...

Yes, hoping!

mister jim said...

Hope it goes well!
Good to know the doc involved.

Pris said...

Hi Jim
The application went off in the morning mail. The first visit will be the longest and hardest, then it should go smoothly. I'm really eager to see her facilities down there, too. The man I spoke to was very nice..even commented that they knew how difficult it was for many of us with CFS to participate and they try to make it as easy as possible. The building is 'green', ie no outgassing, no chemicals in cleaning, etc. since so many of us are chemically sensitive..there's even a health food restaurant on one floor.

cinderkeys said...

I shouldn't be amazed that they thought to accommodate people with MCS, but I am. Fingers crossed!

Pris said...

I'm not amazed with Nancy Klimas since she was friends with my former doctor. He had a big sign at the front desk telling staff and patients not to wear any sort of frangrances to visits for the comfort of other patients. I never smelled cleaning odors and there were comfortable chairs in his waiting room...even a sofa if you needed to lie down. He didn't over-schedule and if a person got there late for an appointment, he would cancel them rather than push others back. I got in to see him right on time and never more than a few minutes after. That was a biggie, too.

The really amazing thing was that he took Medicare until the year before his death and he'd sworn he always would. I think he'd received his diagnosis when he made that decision to drop it and go straight fee and pared back to a one man practice until he had to leave. The illness was incurable but he tried everything and if anyone could've beaten the odds I feel certain it would've been him. Most of the 'big deal' doctors in the field charge large fees and take no insurance of any kind. Paul Cheney is the worst offender in that regard. A shame that he turned his back on the bulk of us with no money.

cfswarrior said...

This sounds like a great study. I hope you are able to get into it! Dr. Keller sounds wonderful-what a huge loss for you.

Keeping my fingers crossed for you...

Pris said...

Hi T, I hope so , too. I do miss Dr Keller so much. As you know, it's hard to find a knowledgeable doctor anywhere.

Collin Kelley said...

I'll be thinking good thoughts for you.

Pris said...

Thanks, Collin!!