Editor’s comment: In June 2013, we told you about new research conducted by Integrated Tissue Dynamics (INTiDYN), which found that people with fibromyalgia have excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands. (See “Fibromyalgia: It’s Not All in Your Head – It’s in Your Hands!”) This week Dr. Frank Rice, President and Chief Scientist at INTiDYN, sent out this letter updating us on what they have been doing since releasing their groundbreaking study last year. Following the letter, you’ll find links to the original journal article and related documents as well as some additional notes from Dr. Rice.
It has been too long since I have been in contact with many of you. An update is long overdue.
I am sure you wish research would go faster and so do we. We regret that we have not yet published anything new since the study last June in PAIN Medicine. It took over 3 years of research for that one publication. Based on the initial discovery of a real pathology, there are more than enough ideas to pursue (many inspired by you) limited by time and money. We are working on novel ideas and funding from many angles including the recent submission of a multi-million dollar grant proposal to the National Institutes of Health (NIH) in collaboration with the Center of Excellence for Pain Medicine at the University of California at San Diego. The proposed research would expand our study on female fibromyalgia patients, add male fibromyalgia patients, and include patients with complex regional pain syndrome (also known as reflex sympathetic dystrophy) and low back pain. It will take 3 months before we will know whether it is funded. So keep your fingers crossed. Prayers are also gladly accepted.
Nonetheless, things have not stood still. We now know more about the molecular characteristics of the pathological nerve fibers on the arteriole-venule shunts, and know they can be influenced by estrogen which may contribute to why fibromyalgia is more common in women. This research will be presented at the Annual Society for Neuroscience Meeting this November in Washington DC. We cannot jump to conclusions that some kind of estrogen therapy will help, but it is one thing under consideration.
Our research is not limited to fibromyalgia but also includes research on other pain afflictions:
Pain caused by cancer and chemotherapy in collaboration with the renown MD Anderson Cancer Center in Houston, Texas, that is funded by a large donation.
Sciatic nerve pain (sciatica) in collaboration with a research company in Israel.
Migraine headache in collaboration with the University of Arizona that will be the basis for another grant proposal to NIH in October.
Eczema and postherpetic neuralgia in collaboration with Columbia University in New York City and the University of Miami that will be submitted for publication later this month.
New directions to our research include:
Potential links between viral infections and the immune system in chronic fatigue syndrome and fbromyalgia in collaboration with a team from the National Cancer Institute.
New topical medications for treating PHN in collaboration with a major pharmaceutical company.
New techniques for detecting disturbances in blood flow in fibromyalgia patients in collaboration with teams at UCSD and Georgetown University.
Partnerships with a research company in London called Transpharmation and another in Stockholm called Akloma.
While this might seem to be diluting our effort, discoveries on one disease often provides insights to others. We are just a small part of a vast international research community that is working diligently to find better therapies for preventing and treating fibromyalgia and many other chronic pain afflictions.
Western Pain Society Conference: Last September, we gave an invited presentation to the Western Pain Society Conference in Eugene, Oregon.
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Podcast: Last November, Arlene Barshinger hosted an indepth podcast interview with us about fibromyalgia and our research on her program N-the-Queue out of San Francisco. Arlene is also a fibromyalgia patient. Here is the link (warning: there is a 7 minute lead in before the interview starts): www.blogtalkradio.com/nthequeue/2013/11/06/fibroymalgia-researcher-dr-frank-rice.
Facebook Chat, Wednesday, July 16, 7-8:30PM ET: We will be part of a facebook chat about fibromyalgia co-hosted by the Neuropathy Association (www.neuropathy.org) and the National Fibromyalgia and Chronic Pain Association (www.fmcpaware.org). Both do an excellent job keeping track of the newest developments, advocacy and support groups. The link for the facebook chat is: www.facebook.com/neuropathyassociation
Please feel free to share this message with others.
Wishing you the best,
Frank L. Rice, PhD
President and Chief Scientist
Documents related to the original study:
An Additional Note from Dr. Rice:
We have received emails from nearly 400 fibromyalgia patients from at least 25 countries in every continent except Antarctica (I guess fibromyalgia is not much of problem among penguins). These include people from all walks of life including physicians, nurses, high-powered attorneys, scientists, former ambassadors, and similar “slackers” (see, you guys are just making this stuff up). All experience the same frustration.
But, we have also received several beautiful expressions of not only the struggles but also hope. One is a short story by Angelina Bong in Malaysia (http://angelina-bong.blogspot.com/2014/04/bubble-of-joy.html). Another is a book called Poetry of Pain written by Linda Martinson from the State of Washington (http://www.amazon.com/Poetry-Pain-Linda-Louise-Martinson/dp/0964897822).
Finding a pain physician near you: In some cases we have been able to make recommendations where you may find a well regarded pain specialist if you are not already in good hands. Most University based medical centers are more likely on top of the most up-to-date information. Most of you have sent us information about where you live, to help with this, though we haven’t been as systematic as we could about doing this. If you are not sure if you have provided us information about where you live, and you wish to do so, you can register this through a form located on the home page of our website (www.intidyn.com)