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Chonic Pain Conference

Chronic Somatic Syndromes Consortium

Program Summary

Introduction: For many years, researchers have studied conditions such as fibromyalgia, irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS), temporomandibular joint disorder (TMJD), somatoform disorders, Gulf War Illnesses, and related entities as independent illnesses.  Our early findings indicated substantial overlap in symptoms and similar underlying neurophysiology such that more recent research has been enlightening in exploring their commonalities.  Today, the aggregate scientific knowledge regarding this spectrum of illness is now finally mature enough to allow us to say that there are common, understood, mechanisms that underlie all of these disparately-labeled entities.   Similarly, there is a core set of drug and non-drug treatments that improve symptoms and function in this spectrum of illness.  However, this message is not “getting out”.  This is in large part because there is no credible scientific entity that has “accepted ownership” of this entire spectrum of illness. 

Ordinarily, “ownership” of an illness is associated with the physicians and scientists from the discipline most closely aligned with the illness under consideration.  But this spectrum of illness affects the entire body.  A very common illness that needs no specialized procedures or treatments would ordinarily be the responsibility of primary care physicians, but most of these health care providers are not aware of the latest findings regarding mechanisms or treatment of this spectrum of illness, and as such they do not feel “equipped” to take on this challenge.  Similarly, no group of sub-specialists now (reluctantly) caring for the spectrum of illness that affects “their region of the body” wants to take a larger role in caring for the entirety of these patients.  Our research group at Michigan would like to take the initial steps toward creating an academic consortium of scientists who are committed to performing ongoing research in these illnesses and who are interested in developing structured diagnostic guidance and education for peer clinicians and the lay community.  

The purpose of this organization is to accomplish several objectives:

There already are some organizations that are advocating for many of the conditions within this spectrum; do we need another?  We would argue that no current organization has the structure or leadership necessary to carry out the objectives put forth at the beginning of this document.  The science-related organizations that exist currently often focus narrowly on one aspect of the illness or on a small collection of viewpoints regarding the patients and their care, rather than developing a larger, evidence-based stance that encompasses the entirety of the illness, treatments and patients.  In some of the disorders within this spectrum, there are very good patient advocacy groups that have attempted to serve many or all of the patients with this spectrum of illness; however, patient-run organizations are not optimal for playing a leadership role in guiding science and expert opinion in these areas.  The ideal organization, such as the consortium we are proposing, should be led by experienced scientific researchers and clinicians from academic and federal institutions, with additional representation from interested pharmaceutical companies. 

We recognize an unprecedented opportunity to create such an entity.  Within the next few years there will be at least 3 – 4 FDA-approved drugs specifically for fibromyalgia in the US, and these drugs will likely be approved worldwide for this indication shortly thereafter.  This will represent the first time that drugs have been approved expressly for one of the conditions acknowledged within this spectrum (notwithstanding the IBS drugs, which have arguably targeted motility much more than pain or other overlapping somatic symptoms seen in these conditions).   In aggregate, the pharmaceutical companies that are developing and testing these drugs have a common goal of educating both healthcare providers and patients about these conditions.  Soon, nearly all pharmaceutical companies will be entering this realm of marketing drugs as a package that includes supplemental education.

Not unlike when fluoxetine and the subsequent SSRIs were first approved to treat depression, we have an opportunity to convey a consistent and concise message regarding what is known about the biology of these illnesses, why these drugs work, and how drug and non-drug therapies could be optimally combined to treat individuals with this spectrum of illness.  An independent academic entity such as this consortium is well positioned to explore the pros and cons of existing education programs and, ultimately, develop educational information or programs that would be useful for clinicians who are treating these illnesses.  This information could be easily translated into patient-friendly education and could also be used by researchers who continue to study these illnesses.   

Conclusion:  This consortium has strong potential to become the driving force behind finally legitimizing these conditions, and at the same time assessing the need for improving existing diagnostic and treatment paradigms that make sense and work for health care providers treating theses illnesses.  In a few years, our efforts, in aggregate, could be responsible for improving the lives of millions of individuals struggling with these illnesses worldwide.    

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