Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 13, 2012.
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This looks excellent and I will read it tonight when I have time. Thanks, Cort, for all your hard work!
Thanks Frenchtulip - it is rather long ..I did consider breaking it up into two blogs...If anyone has any comments on whether that would have been better I'd be interested to hear them. I do tend to do long posts - which is kind of a no-no for the web .
My sense of Dr. Peterson from Gunnar and Dr. Peterson is that he's wanted to do research for years; that he's essentially a frustrated researcher and when he got the chance with the XMRV Lipkin studies he jumped on them. After that he's jumped on every opportunity he can - even to the extent of starting his own research foundation - Simmaron..
In hindsight what a shame it didn't work out at the WPI; they've got a excellent lab, a beautiful facility but in hindsight they made the wrong choice...If Dr. Peterson had stayed the WPI would be working with Chronic fatigue Initiative, PHANU, CDC and Open Medicine Institute and Dr. Perterson would have access to a excellent lab. Plus he would be working with Vinnie Lombardi - whom he mentored earlier in his career!
Its incredible how things turn out....even though he had to start over on the research end, Dr. Peterson is doing fine....he's engaged in quite a few studies (would probably love to do more) and he's kind of a wanted man in the field.
Cort, that's really interesting, thank you! It's a really great and thorough piece of journalism.
And it answered quite a number of questions that I've had for some time.
It is a long article, but it all fits together nicely, and it can be read in separate sittings.
My only (very minor) complaint is that I don't like the formatting on your forum blog posts (the formatting is a bit messy), so I click through to the wordpress version, but clicking on 'home' at the top of the forum, which I find a lot easier on the eye.
I enjoyed reading the personal stories about the patients taking Ampligen. That was really interesting and helpful. Do you, or does anyone else, know if there have been any research papers published for the treatment of ME with Ampligen? My memory seems to have failed me with regards to Ampligen research.
It's a shame to hear that Rituximab is going to be difficult to get approved, because of the patent situation. I imagine that researchers might quickly become aware of some alternative similar drugs now that we've discovered Rituximab, and that alternatives might be thought of quite soon. Interesting to hear that some new alternatives are being developed. I'd be interested to know at what stage of development they might be. But Rituximab research is still in its infancy, and there might yet be some astounding results from Norway that will yet transform the field. If the results of the trials are outstanding, then I hope that the FDA will at least have a look at Rituximab. (I said very hopefully. I don't know how the US system works, so maybe it's out of the question.)
It's good to know that Lipkin is going to test spinal fluid as well now, for the CFI study. Actually, that's really good news. I thought that his efforts might almost be wasted if they don't test some tissue samples (such as lymphoid tissue) for latent viruses. I don't know much about it, but maybe spinal fluid has as much potential as lymphoid tissue, or possibly even more.
Also interesting to read that if Lipkin finds a virus then it will be a significant find: It will be a definite and active infection, and not just a vague antibody result. I hadn't understood that difference before now.
The CFI Lipkin study could be a really important and transformative study. Dr Chia has found enterovirus shell proteins in the stomachs of 82% of CFS patients with stomach complaints, and 75% of Lerner's CFS patients (who test positive for Herpes), have responded to treatment with valacyclovir and/or valganciclovir. So it will be interesting to see if there is any overlap between Lipkin's results and the other researchers' work. Enteroviruses (e.g. polio) have been associated with ME for decades. And then there's retroviruses, of course!
If Lipkin is able to subset patients, that could prove to be invaluable for future research.
A question: do you know the details of the planned NIH CFS Study that they've cancelled? My memory is useless, and it would be helpful to know what I should cross off my mental list of research in the pipeline.
It's confuses me that Montoya has dropped out of the CFI study. I thought he was an integral part of it.
OK, I have to take a break now. I've got up to: Proteomics and Biomarkers in ME/CFS, and I'll read the rest later.
Thanks again Cort. It's really interesting.
Yes, Dr Peterson does seem to be very prolific at the moment, in terms of the research he's involved with. It's great to see.
I wonder if people like Dr Peterson have suddenly been able to find high-profile research partners and adequate research funding for the first time, since XMRV raised our profile.
And research into ME, generally, seems to have mushroomed almost exponentially since the XMRV paper was published. That's my perception of it anyway. I might be wrong because I've only been ill for 8 years, so I don't have a wide perspective on the history. But there seems to be so much high quality research being carried out at the moment in the US, Norway and Australia.
Thanks Bob...One of the only disappointments of the move to Xenforo is the inability to get in there and fix the formatting of the articles. Its a bit painful for me to see because I try hard on the formatting on Wordpress.
To my knowledge there have just been the studies regarding the clinical trials and there haven't been many of them...
What a treasure chest of information, Cort. Many times I've thought to myself, "Gee, if I could just get Dr. Peterson in a room with a tape recorder once a month, I'd get not only the most current information on this disease, but the best."
You've made my dream come true with this amazing interview, Cort. I will be chewing on this for days. Don't know how you do it, but thanks for pulling it off!
I know I owe you an update on my progress post-Ampligen. I'll try to get that to you before summer's end. Thanks again for super reporting.
I don't know but I think XMRV must have helped....and perhaps a great deal...Nancy Klimas gets a center, PHANU moves to newer, bigger center, the CFI initiative pops up.....I think it must have also hurt some people. I wonder about Montoya- working in the of the top university centers in the country - the XMRV saga got so weird that I imagine some researchers had trouble. On the whole though - lots of new initiatives - there's no comparison that I can think of since I've been following things - about 10 years now.
Here the studies I've been able to find thus far. You can find more information on Ampligen on our new Ampligen Resource Center page.
A double-blind, placebo-controlled, randomized, clinical trial of the TLR-3 agonist rintatolimod in severe cases of chronic fatigue syndrome. Strayer DR, Carter WA, Stouch BC, Stevens SR, Bateman L, Cimoch PJ, Lapp CW, Peterson DL; Chronic Fatigue Syndrome AMP-516 Study Group, Mitchell WM.PLoS One. 2012;7(3):e31334. Epub 2012 Mar 14.
Clin Infect Dis. 1994 Jan;18 Suppl 1:S88-95. A controlled clinical trial with a specifically configured RNA drug, poly(I).poly(C12U), inchronic fatigue syndrome
In Vivo. 1994 Jul-Aug;8(4):599-604. Changes in the 2-5A synthetase/RNase L antiviral pathway in a controlled clinical trial with poly(I)-poly(C12U) in chronic fatigue syndrome
Ann N Y Acad Sci. 1993 Jun 23;685:756-7. RNA drug therapy acting via the 2-5A synthetase/RNase L pathway. Suhadolnik RJ, Reichenbach NL, Hitzges PM, Ablashi DV, Strayer DR, Carter WA.
I owe you an email and am looking forward to that update. We can see that Ampligen has made a major difference for each of the patients interviewed....they may not be well but all were severely ill before Ampligen and improved greatly on it...Hopefully Ampligen will pass muster at the FDA and they and others will the have the opportunity to be on it as long as necessary without busting their budgets and having to move to a new location simply to get the drug.
Two really good bits of news in one month! The FDA agrees to a Stakeholder Meeting and Hemispherx gets its chance for approval...
How do we know that the NIH in house study was ever alive, alive, alive? Whatever their feelings about Mikovits and the unfolding events surrounding XMRV, it was/is the government's RESPONSIBILITY to deal with a major disease that they've consciously neglected for so long. We are not underdogs or supplicants, we are citizens who should expect the government to serve our needs without a charm offensive.
I realize you are reporting Peterson's impressions but they are just that. It doesn't seem as if he knows for certain what happened. And if I recall correctly, hasn't he told patients that if he had gotten m.e. he would be fighting mad, aggressively demanding research and treatment. According to what I remember, he was puzzled by our passivity.
Thanks for that Cort. I can't remember if I've actually read the details about any Ampligen research, so I'll have a look through those.
Dr Lerner is also having considerable success with valacyclovir and valganciclovir in a subset of CFS patients. Do you know if any one else, such as Dr Peterson, is using or researching those drugs?
With Ampligen, valacyclovir/valganciclovir and Rituximab, maybe we are steadily moving towards a treatment now.
Good recall! Back in February, I posted this:
I know Dr. Peterson does use antivirals in some patients and he will be part of the Open Medicine Institute Rituximab trial in the fall, I believe it is...
Yes, he said that
The NIH study was certainly alive - he was sending patients to them to get tested...at some point after XMRV fizzled out they dropped it. My sense is that they were impressions - The feds spent alot of money on XMRV...maybe they didn't want to spend any more on ME/CFS after that...who knows?
Cort, I haven't got a clue what research studies are ongoing, or are planned, or have been cancelled etc.
I've been unable to keep up to date, and I usually can't find any information, and sometimes I just can't remember.
I think it would be really useful to have a resource on the forum with a list of ongoing or planned research studies.
Maybe a wiki page would be best, but we don't have access to the wiki at the mo.
I wonder if you have any thoughts on that, Cort, and how we could achieve it?
http://phoenixrising.me/archives/7720 Here in March, you mention the NIH study. Was anyone here invoved in this study or know what it was about? Rather strange they would just drop it in midstream.
Cort, do you know why Dr. Montoya dropped out of the CFI? A wiki page with a list of studies, what they are about and updates in status would be a great idea, Bob.
Wow, Cort, your article just goes on and on! (I've read it all now.)
It's so helpful, thank you.
I've been really struggling to get hold of much information over the past few months, about planned and ongoing research projects, and this article fills a load of gaps for me.
Dr Peterson seems like a very impressive researcher and clinician.
I'm glad that Dr Peterson thinks that Unger is doing a rigorous job with her project re definitions etc.
I've been trying to find out more about that project, but haven't been able to. Even the CFSAC didn't know anything about it at the last conference. I might have missed an explanation of it from the CDC man though, and so I'll watch some of the CFSAC video when it gets posted.
Cort, do you happen to know if Dr. Staines is part of PHANU, or are they seperate? I've not heard of PHANU before.
Actually, I've not heard of a few of the organisations that you've mentioned.
Thanks again Cort.
I think a WIKI page would be a great idea..We can get studies from clinicaltrials.gov and NIHReporter and then go around to funders and researchers and ask what they have in place, when they think they will be done, are they recruiting for patients, etc.
We think we know what we want to do with the WIKI but the issue has lost a bit of steam....volunteers to get the WIKI going would help....
I'm surprised how little there is on the CDC physician project; they're using lots of really good ME/CFS physicians - a real change for them.
To my knowledge Dr. Staines is associated with PHANU; I believe Dr. Marshall-Gradisnuk leads the group. We have an interview with her coming up soon.
You can also try a Google Site Search
Separate names with a comma.