We have been overwhelmed with the response from those afflicted with fibromyalgia. We want assure you that we have received your message and that each of you is important to us. We want to get this message back to you without further delay along with the accompanying documents. Please feel free to share these with your loved ones, friends, aquaintances, physicains and other caretakers.
Many of you have shared personal stories and specific questions that we do wish to respond to on an individual basis as soon as we can. For the moment we wish to address more broadly many general concerns and questions that are common among many of your messages:
1. At INTiDYN, we are the scientists who do the basic research and the analytical parts of the studies. We are not qualified to answer most of the medical questions related to medications, most effective treatments, etc. As many of you unfortunately know, there is not yet a concensus on these questions. We do hope that the results of our research will provide a foundation to develop such a consensus. The experiences that you have been sharing will also be helpful in this process. We do work closely with a nationwide network of top rated pain specialists informally referred to as the Neuropathic Pain Research Consortium (NRPC). We will be sharing your information with them and will try to set up a system where some of your medical question can be directly sent to and answered by them.
2. Many of you are seeking specialists in your local area for fibromyalgia and other forms of chronic pain. We will work with the NRPC and others to seek their recommendations for top pain specialists over as many areas of the country as they can cover. We will work with them to develop a way to disseminate this information.
3. Many of you have shared individual stories of how your fibromyalgia may have started that can be quite different from each other. That is true. Unlike a shingles rash (acute herpes zoster) that can result in chronic pain (postherpetic neuralgia), the source of fibromyalgia is varied and even unknown in many cases. The age of onset can also vary. Likewise, among you are those who can also have other afflictions as well. As, such many of you have felt that your particular case is unique and unlike anyone else. That is not entirely true. We want to assure you, that among all the fibromyalgia patients, there are others who share your story and pain. Regardless of the differences, nearly all of you share the devastaing impact that fibromyalgia has or has had on your quality of life, and the frustration of finding a treatment that works. Some have been fortunate to find improvement and others have not. Unfortunately, that is a major problem with almost EVERY type of chronic pain condition. Some things work for some folks and not for others. We don't yet understand why. One of the objectives of pain research being conducted all over the world is to try and find the right match between the right patient and the right therapeutic approach. The objective is referred to as "personalized medicine". This is why it is important for you to share your stories especially with pain specialists who are aware of the latest research. See #1 and #2 above. What we do know is that those who refuse to surrender to their pain and engage in activities despite the pain, those individuals generally fare better in managing their pain.
4. In order to focus on fibromyalgia alone, our study had to look only at patients who did not have other afflictions, but our study patients did vary with their age of onset and potential reasons why their fibromyalgia may have started. Among them, the pathology involving the nerve fibers on the blood vessels was very similar, so that is at least a start. Many of you have inquired about
participating in research. It will be important for our nationwide team and other researchers, to make sure our results are consistent among a larger number of fibromyalgia patients which will include men as well as women. So we appreciate your offer to particpate as we plan to broaden the extent of the research. This will not happen soon enough for those who are suffering. It will happen but we need your help. It is important for you to get the word out to others that we need patients who are will to volunteer for research, which will help in preparing for this effort. For these types of studies, it is equally important to get friends who don't have fibromyalgia to be willing to participate as "control" subjects like those who volunteered for our study. Sometimes it is harder for researchers to recruit control subjects because they are not hurting and don't realize how important it is for them to participate as well. In the coming days, we will modify the registration page at our website for anyone to register if they would be willing to participate. So please check in to our website by the end of next week.
5. Was our study a hoax? We were asked this question by some inquiries. We can assure you that Dr. Albrecht and I are well recognized internationally for our years of quality research in the peripheral nervous sytem under normal conditions, during development, and under disease conditions. We developed our technology with collaborators at the Karolinska Institute in Sweden, and our international network of collaborators has included 5 Howard Hughes Investigators and numerous researchers from major universities including Johns Hopkins, Harvard, Yale, Caltech, University of California San Francisco and San Diego, Cambridge, Oxford, Heidelberg and Uppsala, as well as institutes such as the National Institutes of Health, the Karolinska Institute, Israel Institute of Technology, and the Max Planck Institutes. Although this was our first study of fibromyalgia, our collaborations have extensive published and ongoing research on other chronic pain afflictions such as postherpetic neuropathy, complex regional pain syndrome, diabetic neuropathy, and post-traumatic stress. We have brought this background to bear on the fibromyalgia study in collaboration with a pain specialist team at Albany Medical College led by Charles Argoff MD who is rated among the top pain specialists by the U.S. News and World Report. By some standards, our study was small, but the results were so profound that they acheived an especially high level of significance. The standard for significance in scientific studies is what is referred to as a "p value of 0.05" which means that there is only a 5% possibility that the results could be explained by chance. Our results were a p value of 0.0001 which means a 0.01% likelihood of occurring by chance. Of course, there is an outside chance that our results will be an exception to the rule in a larger study.
6. Can the biopsies be used for diagnosing fibromyalgia? That is a good possibility but policies and validation are not yet in place. First, any attempt to do that needs to involve a physician who has the right kind of experience in doing a thorough job with the clinical part of the diagnosis. Second, we could then do our biopsy analysis to confirm whether or not there are excessive nerve fibers associated with shunts like that which we found in our study. However, our findings are too new and would need to be shown in many more patients before insurance companies would pay for the cost. So someone, wishing to have this tested would have to pay for the cost themselves. We are sorry about
that. As noted above, we are in the process of finding financial support from grants, contracts or donations which would cover the cost for those who would qualify for enrollment in a funded research study (see our website and the link on how to support further research).
I apologize for the length of this message, but I hope it addresses most of your questions. In closing, we have been overwhelmed by messages of gratitude for the research to date and the sense of relief that something definitive was discovered. This propels us and other scientists forward to tackle the challenges of this difficult research. We get a sense that many of you can feel more confident about
openly discussing fibromyalgia with others. A major problem with fibromyalgia as well as other chronic pain conditions is a lack of a visible champion and spokesperson such as a Michael J. Fox for Parkinson's Disease or the late President Reagan for Alzheimer's Disease. Consequently, except for arthritis, the general public is not aware of the extent and difficulties in diagnosing and treating chronic pain.
Best wishes,
Dr. Rice
Frank L. Rice, PhD
President, CEO, and Chief Scientist
Integrated Tissue Dynamics LLC
I'm sorry but I had to take out links since they were also asking for financial support which is against our forum rules. This is very interesting though and I wish them more success. Many doctors and researchers are actively studying this illness now...far more than when I developed it.
Sherrine
Post Edited By Moderator (Sherrine) : 11/4/2013 3:51:52 PM (GMT-7)