Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 23, 2012.
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Terrific blog, as usual, Cort.
I have had a bad month and reading this gives me a lot of hope. I just wish the conference was earlier. 2014 seems such a long way away. Oh well: it gives me time to save money for the trip since I plan on attending. I'm sure there will be a lot of good news by then.
this is good news.....
what's the story with 2013 ?
Great news.. but so frustrating on so many levels. They obviously now acknowledge that all of us are "really" physically sick, but now we have to try to sift through their findings and theories, while meanwhile more years of our lives are lost, bein on the couch. sigh
Thanks, Cort - things seem to be on the up.
Looking forward to hearing more about the OMI initiative next month - that sounds very interesting. With such a complex disease, collaborative research is hugely important.
It's news when the CDC sets the standard for rigour!
Thanks again for staying up with the latest. The research behind this, let alone the writing, boggle my mind. Busy man!
Thanks, Gracie - lots of stuff going on
Sorry to hear that Gamboa...yes, it is a ways away but I think it will be a terrific conference. By then we'll have great pathogen data, Dr. Montoya will have published his results , I imagine the Open Medicine Institute will be buzzing, we'll know alot more about Rituximab, PHANU will have extended their excited NK findings (can you say biomarker?)...if things work we could be something of a hot item by then...who knows?
its a great place to visit that's for sure..
Everybody seems to be collaborating but more than anyone else the OMI seems to embody that idea...I'm looking forward to learning more.
I thought that would tweak a few people What I was told from Suzanne Vernon, though, was that the forms required for get that grant were extensive and difficult and she felt the fact that the OMI was able to handle that and get the grant was a very good sign for them..
Dr. Belay certainly “tweaked” a few people at the June CFSAC meeting when he explained that the CDC isn't studying “how prominent physicians diagnose this disorder.” That's precisely what they're not asking. If you missed that exchange, Cort, both the video and minutes are available now. Here's how some members challenged the CDC's research design:
Again, the prominent clinicians are pointedly not being asked how they “diagnose this disorder.” I don't understand what's to be gained by suggesting that the CDC study itself is anything but horribly flawed.
Montoya is firmly rooted in the HHV-6 = CFS camp. Treatment = long-term anti-virals. I thought we already went down this road? ... (he talks about this on youtube, if you haven't heard him)
Check out the following site: http://chronicfatigue.stanford.edu/about/projects.html
First, It goes beyond HHV-6. Second, anti-virals are beneficial for some people and they still may play a role in conjunction with other therapies. The fat lady is far from singing.
We went down this road before, and it was the right one. Montoya's double-blind Valcyte study back in 2007 was falsely portrayed as a failure because the treatment group didn't improve over the placebo group at 6 months in any areas other than cognitive function. But these were only preliminary results- the full paper is still in peer review.
When they gathered data over a longer period of time, they found that the treatment group continued to improve while the placebo group languished. By the one year mark all symptom domains showed a statistically and clinically significant improvement.
The same time-lag pitfall has applied to all the effective treatments for CFS. Ampligen's effects are barely significant at 6 months but there is a big difference after 18 months. The authors of the Norwegian Rituxan study set a primary endpoint as CFS symptoms 3 months post-treatment. Rituxan failed to benefit most people in the study by three months but most people were better 6-8 months after a single dose of the b-cell depleting drug..
I actually think they're doing this exactly right. My guess is that these physicians don't tick off the parameters of the Fukuda or the CCC criteria when they look at patients. They ask them questions and determine for themselves who has CFS and who does not. If the CDC asked them what specific definition they're using they'd probably be putting them in a box that just doesn't fit them; ie they'd have to translate their diagnostic protocols into a definition...Instead the CDC is simply letting them tell the CDC in their own words how they diagnose patients. After that the CDC will be able presumably how well each physicians approach fits the different definitions.
Read again, Cort. The CDC isn't letting the clinicians "tell [them] in their own words how they diagnose patients." They're simply asking them to select CFS patients, without explicit reference to any criteria. Dr. Belay explains, “For example, we have Dr. Klimas and Dr. Klimas sees from her judgment and her practice, using whatever criteria she uses, that a particular patient is a CFS patient. We’re going to use him or her in the study.”
You write, “My guess is that these physicians don't tick off the parameters of the Fukuda or the CCC criteria when they look at patients. They ask them questions and determine for themselves who has CFS and who does not.” Where on earth does that guess come from? Dr. Fletcher explains that Dr. Klimas “wouldn’t want to say to a patient that you have CFS if they didn’t meet some definition.”
Here's how Dr. Peterson advises clinicians making a diagnosis:
In reality, Dr. Peterson doesn't exactly follow the CCC or CDC definitions. He has been using specific lab tests and functional tests to help identify CFS cases for well over a decade. While he goes through an exhaustive effort to exclude non-CFS causes of patients' symptoms (more thorough than the ones required by the definitions!) he does not subscribe to the notion that CFS is purely a diagnosis of exclusion. He rejects this idea. He would say that clinically useful biomarkers have existed for many years.
The ultimate goal here with this study (at least for us) is that the CDC gets that information and starts acting on it...Who knows - if the data supports Dr. Peterson's ideas (and I assume it does ) then if the CDC is rigorous enough they'll act on it....Certainly there is agreement on the NK cell functional data between Dr. Peterson, Dr. Klimas, the PHANU researchers and others...and general agreement on the VO2 max data...I assume that is what he is focused on...
The OMI is in the process of re-upping the grant and trying to extend it to include much more information....Hopefully they'll get it. I would note that Dr. Peterson is very high on this project - I hope it works out.
At issue here is rigour of the CDC research design. There's no plan for Dr. Klimas (or the PHANU) to be involved, and Dr. Unger isn't willing to commit to the VO2 max test.
Dr. Unger writes, “We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME (sic), the 1994 CFS definition and the newly proposed International ME definition.” After “collecting as many parameters as possible,” the CDC plans to create its new definition by using the core symptoms of the 400 preselected CFS patients and applying unspecified instruments (subject to there being any good ones) to the resulting symptom domains in order to establish severity cut-offs.
Certainly there's no mention of the CDC's exploring “NK cell functional data.”
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