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: info@wpinstitute.org
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.
>Thank god, someone has the courage to charge hell with a bucket of water!
Do you know the story of the hummingbird? I will look for a clip from the movie – "Dirt, the movie" and post it. The story has been an inspiration to me many times.
What is the saying…Build it and they will come? My sense is that a bucket of water will turn into a shift in the wind and a monsoon rain storm that will start to cool the fires of hell.
Thanks for answering our questions… it helps.
Cathy
>Here is it:
"I will be a hummingbird" as told by – Wangari Maathai
http://www.youtube.com/watch?v=IGMW6YWjMxw
WPI is not only a butterfly you are all hummingbirds.
Cathy
>Hallelujah.
Can I ask another question?
Will successful treatment protocols, once established, be published/shared outside the clinic/US?
My feeling (hope) is that whatever happens there is going to trickle out via shared networks to the rest of us anyway, so perhaps not being able to be an actual patient at the clinic won't be the end of the world. Hope so.
>Lisa Simpson – I don't know the answer, I'm just a patient in the UK, but I believe that we just need one place in the world where patients start getting better – then it can be copied anywhere in the world.
>Please can you advise me about the interesting findings found at autopsy of two very seriously ill young women in the country (UK) – Ms
Sophia Mirza and Ms Lynn Gilderdale – who were treated abominably during their long illness when alive. (Ms Mirza was thrown into a locked psychiatric ward, the police having battered down her door and she was sectioned. She died a terrible, tragic death following this violation). Ms Gilderdale sadly, requested her mother to assist her to die – so in despair was she.
Autopsy findings revealed DORSAL ROOT GANGLIONITIS in both Ms Mirza and ms Gilderdale. At Ms Mirza's inquest the pathologists said that she was not a psychiatric case but had severe neurological illness.
Can tests be done for this neurological damage while we are still alive? It seems very relevant to further research projects with CFS/ME. In UK we are trying to establish a "tissue bank" – we need more autopsy work done. But we would (obviously!) prefer to get some research done while we are still alive if something can be done to relieve our vile existences. I cannot call them "lives" – for we are just existing. Some are so very ill they hardly are alive at all. it is disgraceful and a violation of human rights to treat ill, vulnerable people the way we are treated in the UK if we have CFS/ME.
>Astrocyte depolarization.
Not likely they'll find anything but the slight traces of the neurovascular damage it leaves behind.
>Thanks for the FAQs, Jamie!
What about Peptide T? Any clinical trial for that coming along?
>I agree with the comment from Lisa Simpson above. Show them how it's done WPI!!
>Please help win funds for WPI by voting daily in the Vivint contest via Facebook – they're already winning in their region for a prize of $100,000 and will win $250,000 if they win overall (they're currently 4th overall). Over 1,000 of us are already voting every day – join in!
Here's the voting link:
http://www.vivint.com/givesbackproject/charity/769
I'd love to see a blog post on this – we need to get the word out to the whole community, especially those who support the WPI and want to see more research.
>Will this be cheaper than Cheney?
>Recent FAQs about the clinic at the WPI
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.
———————————
"openness to all options"?
>Jamie, here's a question I've been wondering about for a while.
Both you and Ali have taken both antiretrovirals and antibiotics.
What have your experiences been with each of these? Have they been really different?
What do you think of the use of extended antibiotics at this point?
Thanks for any information you might provide.
>Yes, please tell us.
Or if ANYONE has found ANYTHING that REALLY helps…
please let us know.
If I found something that really helped pull my butt out of a sling, I would surely tell others, and I hope they would do the same.
>Erik:
As I've said thousands of times, the only thing that was EVER a great help to me and really did give me a life back is Ampligen. I've had some relief and improvement from IVIG in the past, although it can't compare to what Ampligen does for me.
Linda
>Yes, and the doctors who are "stepping up" by really trying to DO SOMETHING deserve high praise for their efforts.
Dr Peterson used your degree of improvement as an example to me of why I should participate as an ampligen placebo control patient…. since I couldn't come up with the bucks for the Hemispherx "cost recovery" study.
So… I took a wild leap at what I COULD afford.
But, y'all have heard that story already, so there's no need to repeat it.
>Everything I have seen for ALL these years tells me I made the right choice.
Thanks to all the courageous pioneers of chemical therapy. If it weren't for you, I would never have known that I was better off doing something else.
Like you, I look forward to the day that some EFFECTIVE drug is finally developed, but I'm not going to hold my breath, waiting for it.