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

Posted by Cort Johnson

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

Stanford to co sponsor CFS
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.

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.




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