The IACFS/ME Newsletter was chock full of good news this time… For starters, Stanford, of all places is co-sponsoring the next IACFS/ME Conference!
Stanford University to Co-sponsor IACFS/ME Conference in March, 2014
In a surprise, Stanford, the 4th ranked medical research university in the U.S., will co-sponsor the next IACFS/ME Conference in 2012
Patient groups groups have always co- hosted IACFS/ME conferences in the past but that’s changed – and in a big way. One might have thought the first University to co-sponsor an IACFS/ME conference would be a small one but no, in a stunning turn of events, somehow the IACFS/ME, Dr. Montoya and Dr. Lily Chu got Stanford, ranked #4 in medical research in the country, to co-sponsor the next one in March, 2014. That should raise some eye-brows in the academic field.
We don’t know where in the Bay Area the Conference will take place but with two of the top medicals schools in the country, Stanford and the University of San Francisco nearby, the opportunity for collaboration and outreach is large. Conferences and workshops are where the seeds for future collaboration are planted and the San Franciso Bay area provides very fertile soil for that. Congratulations to the IACFS/ME, Dr. Montoya and Dr. Chu for creating this breakthrough in Conference sponsorship.
The fact that it has happened suggests that Dr. Montoya is making progress within what must be a very rigorous and at times probably difficult research setting for ME/CFS.
Open Medicine Institute
It’ll be intriguing to see how the nearby Open Medicine Institute will figure in the conference and we got a short update on their activities in an attachment to the newsletter. The Institute’s founder, Dr. Andreas Kogelnik, recently convened a collaborative group of international researchers (US, Canada, Norway, Sweden, Germany, UK, Italy, and Australia) to create and act on a list of diagnostic and treatment studies over the next 12-24 months. That list will be published and fundraising efforts begun to support them in Sept of this year.
The OMI has not gotten much press but Dr. Kogelnik’s vision is a very large one and they’re clearly interested in major initiatives. Their ability to score a major grant from the CDC to study how prominent ME/CFS physicians diagnose this disorder suggests they have the rigor to participate successfully at that level. Phoenix Rising will be meeting with Dr. Kogelnik and Linda Tannenbaum in the near future and we’ll provide a full report.
Treatment Primer Gets on Federal Guidelines Site
The newsletter of the organization of chronic fatigue syndrome professionals, the IACFS/ME, is out and its got some good news. The IACFS/ME’s Treatment Primer has been racking up some positive reviews. First, the federal committee on CFS, CFSAC, recommended that the Primer be widely disseminated to physicians and health care provider. Now the National Guideline Clearinghouse, a governmental agency tasked with providing information and guidelines on effective and safe healthcare, will put the Primer on their site in the fall. It will be the first guideline for ME/CFS treatment on the site. (The CDC CFS Toolkit is not on the site).
The Primer is undergoing a round of revisions as the authors receive comments on the first edition.
IACFS/ME ME/CFS Journal to Debut Early Next Year
The IACFS/ME’s Fatigue Journal will debut in January, 2013
The first edition of the new Fatigue: Biomedicine, Health and Behavior Journal will be out early next year. The creation of a bona-fide ME/CFS journal accessible on major medical indexes has been a long time coming. The inability of the former Journal of Chronic Fatigue Syndrome to show up on those indexes meant that its impact was confined to the small ME/CFS research community.
Some tradeoffs were made. In order for the journal to be economically viable for the publisher it had to appeal to a wider audience than ME/CFS researchers – hence the general focus on fatigue. That focus may upset some patients but the broad focus on fatigue should put ME/CFS studies side by side with other fatiguing illnesses such as cancer, liver disease, multiple sclerosis providing valuable exposure for ME/CFS and providing new insights for ME/CFS researchers and vice versa. Find out more about the new Journal here.
Invest in ME Conference Overview
Finally Dr. Roz Vallings of New Zealand provided another illuminating conference review with her review of the latest Invest In ME conference. Some highlights were:
Dr. Staines - keynote speech suggested ME/CFS is a novel auto-immune disorder involving vasoactive neuropeptides. (A recent study suggested he may be on the right track…more work is underway.)
Dr. Sonya-Marsall Gradisnuk of PHANU – highlighted a bevy of potential natural killer cell biomarkers for ME/CFS….Expect much more on NK cells from them in the future.
- Dig Deeper - check out a recent interview with Dr. Peterson.
- Check out more interviews and information on Dr. Peterson’s Profile Page
23 comments
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Terrific blog, as usual, Cort. :thumbsup:
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.
Gamboa
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
http://chronicfatigue.stanford.edu/infections/
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.”
Notice, Cort, that the CDC study explicitly preselects patients with CFS, which is defined by Fukuda (1994) and Reeves (2005), not patients who would be selected using the more restrictive ME definitions (CCC, ICC).
The INVESTinME DVD (2012) shows Dr. Peterson’s presentation to be lacking in enthusiasm when he describes the CDC’s Multi-site Clinical Assessment of CFS. He comments instead on Dr. Kogelnik’s dreams and hopes to get his Electronic Medical Records software off the ground in that context.
Right – nothing on that yet…Kogelnik is trying to get that kind of stuff in there in the next iteration…That’s where the juice is, for sure….
Someone just emailed me that Dr. Unger visited Dr. Klimas’s clinic was presented with data indicating CFS is a biological disease (which I believe she does believe it is…the question what is her focus….) and was reportedly impressed…We’ll see!
The CDC’s approach under Dr. Unger is a far cry from “the collaborative, consensus type of approach” that the Canadian government sponsored under Dr. Carruthers’ lead in 2003. At the June CFSAC meeting, Dr. Fletcher volunteered that Dr. Klimas uses the CCC to select her patients. Subsequently the CDC announced its plan to enter a sole-source contract with OMI, apparently excluding Dr. Klimas.
I see no evidence that Dr. Unger is “doing this exactly right.”
You answered your own question about Dr. Unger’s focus shortly after her conference presentation last September, Cort. You posted, “They are sticking with the Empirical definition it looks like – Unger says a recent study shows its not so bad (but Jason’s study on it was pretty bad).”
At the November CFSAC meeting, Dr. Unger committed to producing another umbrella definition with severity scales:
Dr. Unger’s plan to redo Reeves (2005) flies in the face of the work done by the “splitters” on the CCC and ICC panels. Their ME definitions describe a distinct symptom pattern found in a large subset of patients, and they articulate what’s known about its underlying pathophysiology. They don’t simply describe severe CFS, as Dr. Unger would have them do.
Last month, Dr. Unger was sufficiently candid as to defend CFS “lumpers,” whereas Dr. Jason “seemed to say ‘lumpers’ cause problems with the definition.” Not surprisingly, Dr. Unger has chosen to keep those comments, along with any comments about heterogeneity, off the record.
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