Miami VA/Dr.Nancy Klimas research volunteers wanted

P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.


SPECIAL NOTICE: The Miami VA Medical Center is conducting a research - Use of Comprehensive Molecular Profiling with Network & Control Theory to Better Understand CFS & Model Therapeutic Strategies - under Dr. Nancy Klimas. The VA is looking for female volunteers with Chronic Fatigue Syndrome, ages 18-65 to participate in the study. CFS symptoms include non-restoratie sleep, cognitive complaints, myalgia, arthralgia, sore throat, tender lymph nodes, exercise induced relapse, headache of new and different type. "A complete immune check-up for free and compensation for your time and travel will be provided". Please contact 305-575-7000 extension 6706 or 4942. E-mail: Fanny.Collado@VA.gov for complete information.

me too - I'ld love to do this

Emailed last night

Got a reply this morning right away. The reimbursement is 200.00 and 3 visits to Miami.
Susie

I am currently in Florida for another two weeks. Staying an hour drive away from Miami. I got in touch with them to ask what it's all about. If they need me. I would have driven down for it. They said it's a three day study. The first day is the intake with examination and blood work. The second day, there's an exercise challenge and you have to be there for 7 hours. The last day, you get more blood drawn.
First of all, I thought it was a one day event where I might have been able to drive back and forth but, there is no way that I can drive three days back and forth. They said they would tell me about hotels nearby where I can stay but, they don't cover the charge for it.
Lastly, I thought that this was just an immune test but, there's an exercise challenge! There is no way that I can do this. I can barely walk slowly for ten minutes on a good day. This would throw me into a major crash and I'm actually here in Florida trying to recuperate from back to back sinus infections.
Too bad I can't be part of it but, it made me think - who are the patients who are comfortable doing this type of study? It certainly cuts out all patients who are severely affected. Even the ones who are not so severe, would they take a chance to go through PEM/PENE?????

Well Nielk, I personally would do it, for the sake of advancing science. If there are no volunteers to GOOd science, there are no results. No results means no treatments. No treatments means we are stuck... And so on...

Dr Klimas is quite cognicent that patients are very sick. In her private clinic, there are very comfortable recliners and blankets available. Hannah the office manager can even make you a cup of tea.

These studies are much needed. I would go if I didn't live so damn far Canada West coast)

I think I'd go, even from the Canadian west coast, if I had anthralia and tender lymph nodes. How are the three days spaced?

She said that since I'm only here a short time she can probably schedule it for consecutive days.

I gave up my private disability insurance because they wanted to send me for a stress test. My doctor: Dr. Derek Enlander didn't let me do it and wrote them a letter telling them that this is harmful for my condition and that it is against his advice. Of course, they used this fact against me on my appeal. so if I gave up a potential $350,000 payout over ten years, I'm certainly not going to do it now EVEN for Good science.

I can go into a crash for months after something like this. They are not talking about sipping tea and I would be willing to give 20 vials of blood and answer 1,000 questions but, I can't take an exercise challenge.

I was really disappointed because I really would want to be part of it. Healthcare providers are taught "first do no harm". I would be willing to be punctured, scanned, pricked,
MRI ed, anything really but put me in a PEM situation.

This is the e-mail I got from Fanny Collado of the Miami VA:

If anyone is interested in being part of the study, I'll be more than happy.

Have not heard back yet. We have to pay for this study?

Stress test?... Never had one

How long would it last? On a treadmill?

Huh. I'm going to Dr K's clinic the end of next month anyway for an evaluation. I wonder if they'd want to do the rest of the stuff at the same time. Might have a low blood volume issue if I do both in the same week, though.

And I'm not so sure I like the sound of the F/U visit.... sounds more like a Wesseley thing than a Klimas thing.