1. How can I be seen at the WPI?
There is already a long wait list. Patients will be contacted on a first come, first serve basis to be scheduled for the doctor of their choice. If you would like to be added to the wait list, please email, rather than call, your request to the WPI office: email@example.com
2. Do I have to be XMRV positive to be seen?
No. Our physicians will treat ME/CFS and related neuroimmune illnesses, without respect to the results of any particular test.
3. What treatments will be offered? Will antiretrovirals be prescribed?
Each physician will treat their own patients. There will be no set protocol. Our physicians will be practicing in an environment that supports openness to all options. All decisions will be made within the context of a physician patient relationship at a particular moment, as always. Antiretrovirals are not promised, nor will they be forbidden. Off-label use of drugs is the usual and customary practice of medicine. We see ourselves as working within the context of a public health crisis. We believe that ME/CFS patients with severe disease should have the right to compassionate use of unproven drugs.
4. What will be different than the care I’ve had in the past?
The group nature will encourage a deeper insight into the illnesses at hand, and provide each physician with exposure to the treatment approaches most likely to be effective. Daily interaction between physicians and scientists will cross-fertilize the thinking of both, impacting patient care directly. Our doctors will be part of an international consortium of practitioners sharing experiences in our Physician Working Group. Records will become part of our database, which, with time, will grow to include a very large number of patients treated by a group of doctors, enabling us to look at outcomes in a broader way than is possible for a single doctor. Adverse outcomes will be reviewed and discussed within the group.
5. Will there be clinical trials?
As all of us know too well, there is no slam dunk, quick and easy trial to do. Tenofovir is probably worthy of study, but until we have a way to monitor, the clinical response is too incomplete and too slow for a short, simple study, given that any study we do now must be possible with extremely limited funds. Dr. Snyderman is interested in studying lenalidomide and we are looking at that. We are open to all options, but unfortunately, pharmaceutical options for study are limited at this time.
6. Is it going to be an alternative medicine clinic?
It will be a “conventional” medical facility, located on a medical school campus, with physicians who are CAM, complementary and alternative medicine, aware.
7. Will insurance be accepted?
No. A superbill will be provided for submission to insurance. Current Medicare and Medicaid reimbursement rates make it impossible for us to accept insurance and provide patients with the time consuming care necessary to impact the illness.
8. Can I see you or be supervised by you in Reno?
No. I’m not licensed in Nevada and getting a new license there with a “practice gap” will take some time. My duties in Reno are administrative. I have started a private practice on the Big Island, where I am licensed. Each physician in Reno will be responsible for seeing and following their own patients.
The enormity of the need feels a lot like charging hell with a bucket of water, considering our limited resources, but we’re going to do it anyway, as we start seeing patients one case at a time.