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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New Research Opportunities

*GG*

senior member
Messages
6,389
Location
Concord, NH
Hunter-Hopkins has joined with several well-known practices to form the Open Medicine Institute. Using EMR (Electronic Medical Records) we will be able to share anonymous information and medical records for the purpose of doing research as a group. We have already obtained more than $500,000 in grants from the Centers for Disease Control to study the Clinical Assessment of CFS.

Patients who choose to participate will have their de-identified records transmitted to a central server so that a special team at the CDC can determine how various medical groups diagnose and manage persons with CFS/ME (PWCs). We hope that this will lead to a standard intake form and formal approach to CFS/ME that can be taught to many other healthcare providers. Participants in this project include Drs. Lapp and Black, Dr. Dan Peterson, Dr. Cindy Bateman, Dr. Rich Podell, and several others. Dr. Andy Kogelnick is the principal investigator.

Many of you have read an October study from cancer researchers in Norway who discovered a new treatment for CFS/ME. Drs. Oystein Fluge and Olav Mella wrote in the October 19, 2011 PLos ONE edition that they serendipitously treated two CFS/ME patients with the chemotherapy drug, Rituximab, and the patients recovered from both their lymphoma and their CFS/ME. They went on to study 30 more CFS/ME patients in a randomized. placebo-controlled study. Of the 15 patients who received Rituximab, ten (67%) had lasting improvements in fatigue and other symptoms.

The mean response from two treatments with the drug was 25 weeks (range 8-44 weeks), but response was somewhat delayed in onset (2-7 months after treatment). There were no serious adverse events in the study, although two patients with psoriasis noted moderate worsening of their rash. See http://www.biomedcentral.com/1471-2377/9/28, the published article, and more details can be found at http://www.research1st.com/2011/10/19/rituximab-trial.

The Open Medicine Institute has already begun discussions with the Norwegian study group, and we are hoping to soon offer trials of Rituximab in our office, pending approval by regulatory agencies and funding for the drug.

Lastly, persons with chronic fatigue or Chronic Fatigue Syndrome are invited to participate in a stud funded by the National Institutes of Health to learn fatigue self-help skills. The study involves learning stress reduction skills and other lifestyle techniques that can be easily done at home. There are no in- person visits, and no medication or other medical treatment is involved.

Payment for full participation is up to $498. You would need a Windows computer with an internet connection. If you think you may be interested, please contact Elaine Beun at (855) 672-1900. Our colleague, Fred Friedberg, PhD, is the principal investigator in this study.

http://drlapp.com/news/me-letter-december-2011/
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
this was in another thread, but thought it should be in Clinical Trials, since that is what it's about.

GG