Academics and even a major charity’s medical advisor have been signing up to Prof Wessely’s attempts to hold patients responsible for the dearth of research here in the UK, but in the USA things have been moving in a direction which delights patients and carers and brings hope to us all in an otherwise very depressing situation.
The Open Medicine Institute in California was set up in 2009 by Dr Andreas Kogelnik. The website says –
“Patients with ME/CFS desperately need answers. We are convinced these answers are readily available if we apply the best resources in a large-scale, concerted effort. Bringing together the right experts and the most advanced technologies to deliver actionable results is a necessary condition for success that has been a long time coming to this field.”
“OMI-MERIT (ME Roundtable on Immunology and Treatment) is a strategic initiative of OMI and its collaborators to bring together leading clinicians and researchers to tackle this debilitating but underserved disease. The MERIT group is focused on developing and applying a multi-factorial approach to the discovery of new diagnostic and treatment solutions for ME/CFS.”
OMI have a focus on Neuroimmune Diseases and Cancer. “The Institute is currently focused on understanding, developing treatments, and finding cures for neuro-immune diseases including ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Autism, Multiple Sclerosis, and other conditions. There are also plans to apply the Institute’s model to a range of diseases including cancer and Alzheimer’s—diseases which have proved difficult, if not impossible, to decode and treat using today’s standard approaches.”
Their priority projects are listed and described at http://openmedicineinstitute.org/research-initiatives/mecfs-merit/ They include
1-Treatment: Phase 1: A Large-scale, Randomized, Placebo-controlled Trial of Rituximab and Valgancyclovir
2 – An International Neuro Registry and Biobank
3 – Protein Panel in Treated and Untreated Patients
4 – Treatment: Phase 2: Other Therapy Mono and Combination Pilots
5 – Immunologic Biomarker Exploration Studies
6 – DNA Genetics
7 – Comprehensive Viral Testing
8 – Advanced Immunologic Biomarker Study 2
10 – Treatment: Phase 3: Natural and Over-the-Counter Substances -will include Moringa olifera, GcMAF, Vit B12, and artemesin
There is a very impressive International list of those involved – OMI-MERIT Initiative Signators (in Alphabetical Order)
Drs. Lucinda Bateman (Fatigue Consultation Clinic & Univ of Utah, UT, US), Allison Bested (Complex Chronic Disease Clinic, Canada), Yenan Bryceson (Karolinska Institute, Sweden), Ron Davis (Stanford Genome Technology Center, CA, US), David Dreyfus (Yale/Private practice, US/Israel), Oystein Fluge (Haukeland University Hospital, Norway), Mady Hornig (Columbia Univ, NY, US), Nancy Klimas (NOVA Univ, FL, US), Andy Kogelnik – Chair (Open Medicine Institute, CA, US), Charles Lapp (Hunter Hopkins Center, NC, US), Jay Levy (UCSF, CA, US), Alan Light (University of Utah, UT, US), Kathleen Light (University of Utah, UT, USA), Sonya Marshall-Gradisnik (Griffith University, Australia), Mauro Malnati (San Raffaele Scientific Institute, Italy), Olav Mella (Haukeland University Hospital, Norway), Jose Montoya (Stanford University, CA, US), David Patrick (Complex Chronic Disease Clinic, Canada), Dan Peterson (OMI and Sierra Internal Medicine, NV, US), Simone Pensieroso (San Raffaele Scientific Institute, Italy), Peter Rowe (Johns Hopkins, US), Charles Shepherd (Private practice, UK), Ila Singh (Mount Sinai School of Medicine, NY, US), Carmen Scheibenbogen (Charité Berlin, Germany), Chris Snell (University of the Pacific, US), Staci Stevens (Open Medicine Institute, US) and Rosamund Vallings (Private practice, New Zealand).