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IACFS/ME on a Roll; Stanford to the Fore! Treatment Primer Gains Recognition and More

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


[caption id="attachment_13299" align="alignright" width="300"] In a surprise, Stanford, the 4th ranked medical research university in the U.S., will co-sponsor the next IACFS/ME Conference in 2012[/caption]

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


[caption id="attachment_13300" align="alignleft" width="300"] The IACFS/ME's Fatigue Journal will debut in January, 2013[/caption]

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.

Dr Fitzgerald - described altered brain activity in ME/CFS and FM that leads to increased pain.



Dr. Delagado - on the importance of vaso-active neuropeptides in treating inflammation and auto-immunity and a drug (avipatadil) that may be helpful


Dr. Baraniuk - was able to subset 4 groups of patients using his spinal proteome results. He believes brainstem problems play a major role and that the bodies 'alarm clock' is damaged. His finding that the increased activity of the pain processing nerves around the joints and muscles in FM probably due to sympathetic nervous system problems fits the 'alarm' scenario; the SNS controls the 'fight/flight' response.


Professors Mella and Fluge - found a 67% positive rate in their Rituximab trials but emphasized they do not believe Rituximab treatment should take place outside of clinical trials. Several studies are ongoing. After three years of searching they have not been able to find a specific autoantibody and believe that something else may be producing the inflammation in ME/CFS.


Dr. Peterson - provided an overview of the many new project he and others are involved in.




Dr. Kogelnik - described a large number of projects getting underway at the OMI including viral, antibody and cytokine research studies, treatment studies involving Rituximab, antivirals and antibiotics and others.
View the Post on the Blog
 
After that the CDC will be able presumably how well each physicians approach fits the different definitions.
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 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.
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.​
Toward the end of his previous segment, Dr. Peterson recalls as one of the CCC authors, “I was always impressed by the collaborative, consensus type of approach” used by “Bruce Carruthers...in the 2003 definition.”​
 
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.”
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!
 
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.”
 
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!
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:
We as a field need to be a little schizophrenic and say yes, we can bring people in under a broader umbrella diagnosis, but then we cannot just group cases and controls. We have to be doing some stratification. We have to use a dynamic range in all of those measures. It is not enough to have just fatigue, but how much fatigue? It is not enough to have any one measure.
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.