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Dr. Susan Levine’s Responses to Follow-Up Webinar Questions—Part I

Dr. Susan LevineOn March 17, the Solve ME/CFS Initiative hosted a webinar with Dr. Susan Levine, founder of the Medical Office of Susan M. Levine, M.D., called, “The Future of ME/CFS.” Dr. Levine has followed up with her responses to the numerous questions that were unable to be answered during the webinar due to time limitations. Given the number of questions posed, Dr. Levine’s responses will be featured in a series of blog posts, beginning with this one. To watch the full video of the webinar, go here:

Q: Please describe research results of the use of montelukast for me/cfs: modifying IL-17 and microglial inflammation, neuroinflammation, etc.

A: Interleukin-17 is an inflammatory mediator found in the tissues of some patients with certain types of asthma, as well as in those with Crohn’s disease and other similar disorders. Because elevations of this cytokine were noted in some of the blood test results performed at a research facility in both short and long duration ME/CFS patients compared with those of controls and because montelaukust has in vitro activity against this cytokine, it may make sense to try it in ME/CFS patients. We are in the process of constructing a small clinical trial using this medication, but several challenges include funding for blood IL-17 levels in a good research lab and determining appropriate endpoints.

Q: Do you think that studies will focus on those sick three years or less over those sick longer? Those ill for less than three years, after all, may not become permanently disabled. Will those of us sick for longer remain rather marooned? What about the American Psychological Association specifically? What about a retraction of somatoform disorder listing in the DSM-V? What about the American Heart Association? With POTS and NMH so prevalent with ME/CFS, certainly they are missing an overarching diagnosis of most patients.

A: We intend to look at all different subgroups, including long and short duration ME/CFS sufferers without preferential treatment to a specific subgroup, but still recognizing that different subgroups may respond differently to therapeutic interventions.  POTS or the presence of other frequent co-morbid disorders, such as Fibromyalgia and IBS, may also impact therapeutic response, so we must be aware of these factors. We are trying to work with large professional organizations to change their “concept” about ME/CFS (that it is physiological), but there aren’t enough of us at present to reach out to these institutions. We recognize the need for this type of intervention.

Q: What about people with gradual onset? Are they going to be studied too? And is it thought that the findings from people with sudden onset do apply to gradual onset? It seems like updating the accuracy of the main websites for physicians could be the cheapest and most useful change. Why not prioritize this?

A: We are as committed to examining ME/CFS patients with a gradual versus an abrupt onset since this subgroup can be equally disabled by this disease. Treatment approaches may vary depending on the type of onset, but we consider all subgroups with the same level of priority. A group of us physicians, other medical professionals, patients and advocates in the ME/CFS community have also recognized the need for addressing inaccuracies on a number of websites, in addition to the information provided about ME/CFS on a simple “Google search.” Once again, time limitations have held us back, but I consider this an important priority since Internet searches have become the preferred way of getting medical information in the last few years

Q: As a patient, it’s difficult and frustrating to hear about albeit well-intended potentialities (centers for excellence, etc.). When do you think real and effective treatment might actually come forward? Even significant relief from symptoms would be most welcome!

A: I agree that new treatments are important to give hope to the ME/CFS community, and we are working on several fronts to approach this problem. Firstly, we are trying to identify consistent biomarkers that will help us follow the impact of treatment interventions; trying interventions (antivirals, sleep aids, immune modulators) that make sense to ameliorate patient symptoms; and repurposing existing drugs that may alter the immune and/or autonomic dysfunction profiles in ME/CFS patients that circumvent the challenges in bringing a “new” drug on board (FDA approval, a lengthy process), but which we will continue to pursue as well.

The Centers of Excellence approach (COE)—which I realize has been talked about for years—makes sense because it will serve to bring together under one roof the numerous specialists who could add their expertise to the care of ME/CFS patients. Neurologists, cardiologists, physiatrists, sleep experts and infectious disease experts would all provide recommendations to the care of an individual patient and generate research questions.

Simultaneously, students would be exposed to the deliberation process that we as ME/CFS experts in the community undergo to optimize patient care.

Support for disability and the appropriate documentation for this process could also be provided. Such a center could serve as a central hub, and primary care physicians could connect through Skype or other virtual methods to ask questions regarding their patients who have restricted access to expert care.

Q: As a housebound ME/CFS patient, I want to be a better advocate; my congressman gives me no positive feedback for NIH funding increases. Do you have any suggestions for better advocacy?

A: I believe that continuing advocacy efforts are much needed and several organizations, including the Solve ME/CFS Initiative are committed to fighting for further funding and other types of recognition for ME/CFS. These advocacy initiatives must be specific and well thought out and reach the appropriate parties to be most effective.

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