Posts Tagged ‘health’

Fibro Study Recruits Participants

July 12, 2009

Do you have fibromyalgia or chronic fatigue syndrome? If yes, read on!

Welcome to my new blog! This space will feature whatever is interesting me most on any given day – whether it relates to nutrition, self-care, the latest research or any other useful tid-bits. I’m a registered dietitian with a diagnosis of fibromyalgia/chronic fatigue. (See below for links to the Women’s Health Blogfest and find out what other registered dietitians [RDs] are doing on the web!) What I’m most interested in today is a new study trial of a promising supplement that may give relief from mental fog, low energy, sleep problems and even pain.

Last year around this time I ran across a supplement called Prevagen, made from jelly fish protein, that works by regulating the calcium balance inside brain cells, helping them stay alive. I want MY brain cells to be alive as long as possible – early brain cell death is one of the causes of age-related cognitive decline. At that time I was experiencing quite a bit of “Fibro-Fog” – I felt like I was swimming in a sea of jello. My thought processes were slow and I had a hard time concentrating. I was very interested to try anything that might give me relief. I was also excited to try it for another reason: according to at least one theory of fibromyalgia causation, the calcium balance in muscle cells is crucial for proper functioning, and an excess of calcium can cause unrelenting muscle spasms – another symptom I was unfortunately all too familiar with.

I ordered some and within a few weeks noted a significant improvement in concentration, alertness, energy and well-being.

I decided to contact the manufacturer to see if they had ever done a study using Prevagen on fibro patients. I contacted Todd Olson at Quincy Bioscience (the makers of Prevagen), who told me that he and his team had already heard from some fibro sufferers who were pleased with their results on Prevagen.

Long and short of it, after some discussion we agreed to work together on developing the study design, with me helping frame some questions to be answered by the study participants. THIS STUDY IS READY TO ROLL NOW!

The cool thing about it is that every participant gets a free supply of Prevagen to try out. The double-blind study is set up so neither the participant nor the investigators know which person gets real Prevagen or a placebo until the end. At that time, all the folks on placebo will be given an equivalent amount of Prevagen to try, so that everyone gets a chance to see what kind of relief they get.

Another cool thing is that you don’t have to go anywhere to be in it, all you have to do is fill out a weekly online questionnaire. You do NOT have to give up any of the medicines or treatments you are currently taking, in fact one of the requirements is that you continue to take the medications you are currently on. There are NO lab draws or other procedures. Just the online questionnaire.

If you’d like to be part of the study, please go to my website and click the link!

Check out the Women’s Health Blogfest links:

Angela White at Blisstree’s Breastfeeding 1-2-3 – Helpful Skills of Breastfeeding Counselors
Angie Tillman, RD, LDN, CDE – You Are Beautiful Today
Anthony J. Sepe – Women’s Health and Migraines
Ashley Colpaart – Women’s health through women
Charisse McElwaine – Spending too much time on the “throne?”
Danielle Omar – Yoga, Mindful Eating and Food Confidence
Diane Preves M.S.,R.D – Balance for Health
Joan Sather – A Woman’s Healthy Choices Affect More Than Herself
Liz Marr, MS, RD – Reflecting on Family Food Ways and Women’s Work
Marjorie Geiser, MBA, RD, NSCA-CPT – Healthy Women, Healthy Business: How Your Health Impacts a Powerful Business
Marsha Hudnall – Breakfast Protein Helps Light Eaters Feel Full
Michelle Loy, MPH, MS, RD – A Nutritionista’s Super Foods for Super Skin
Monika Woolsey, MS, RD – To effectively work with PCOS is to understand a woman’s health issues throughout her life
Motherwear Breastfeeding Blog – How breastfeeding helps you, too
Rebecca Scritchfield, MA, RD, LD – Four Keys to Wellness, Just for Women
Renata Mangrum, MPH, RD – The busy busy woman
Robin Plotkin, RD, LD – Feeding the Appetites of the Culinary, Epicurious and Nutrition Worlds-One Bite at a Time
Sharon Solomon – Calories, longevity and do I care
Terri L Mozingo, RD, CDN & D. Milton Stokes, MPH, RD, CDN of One Source Nutrition, LLC – Crossing the Line: From Health to Hurt
Wendy Jo Peterson, RD – Watch Your Garden Grow