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Suzanne Vernon at the IACFS Conference





Cort Johnson

Phoenix Rising - Cort Johnson's Column

...Presenting complex chronic fatigue syndrome (ME/CFS) research in a way we can all understand.









Cort Johnson publishes the free Phoenix Rising newsletter and runs the website of the same name. An ME/CFS sufferer himself, since 2005 he has used his keen intellect to follow the latest developments in ME/CFS research and treatment and translate the often complicated concepts into language that the layman can understand. An active advocate Cort has been participating vigorously in the Campaign for a Fair Name to get CFS recognized as ME/CFS.




Tuesday, September 22nd, 2009:


Rocking the House, Rocking the ME/CFS Research World: Suzanne Vernon at the IACFS/ME Conference


(IACFS/ME Conference 2009)


by Cort Johnson



"I have come to know her as a passionate organizer, networker and creative thinker who has made it her mission to advance the field" - Dr. Lucinda Bateman


Collaboration is a key aspect of Dr. Vernon’s vision. She won the OFFER Research Excellence Award and during her acceptance speech she hit this aspect hard. This wasn’t your usual "thank you address’. Dr. Vernon used the bully pulpit she had to communicate her vision of a vastly changed ME/CFS Research field and she didn’t mince words; she asserted that the research community needs to put its ‘ego’s aside’ if this field is going to progress rapidly. If researchers are going to make a difference in this disease in a suitable amount of time they’re going to have to look beyond publishing their papers and accruing their professional brownie points and really start collaborating.



Walking Her Talk


It soon became clear that Dr. Vernon is walking her talk. She is building (very quickly!) a collaborative and creative research network at the CFID’s Association of America.


The CAA is funding six grants under its Research Initiative; three of the teams are smashing the normal boundaries seen in academia and research. The group studying inflammation and metabolism in the brain is collaborating with the group examining autonomic nervous system problems in the body and these two groups are handing off their data to a third group, which may have the most difficult job of all; analyzing both groups data together to create (hopefully) a model of inflammation/ autonomic nervous system/brain dysfunction in ME/CFS.


These projects didn’t start out this way. The groups submitted separate proposals and expected to work separately but by the time Dr. Vernon had gotten through with them they were one large, very multi-dimensional project. The separate projects will still stand or fail on their own - they’ll have their separate results to report on – but by combining all three they’ll also take at shot at elucidating the big, big picture. This is the kind of creativity that private funding organizations such as the CFIDS Association of America often excel at.


These three groups will be meeting physically several times (next in Sept, 2009) and in between those times they’ll be sharing their findings via a secure Google Group. This is another instance of Dr. Vernon's emphasis on breaking down boundaries; research groups traditionally do not share their findings before publication.


Jumping on Another Opportunity - Meanwhile Suzanne Vernon spent several months getting four more proposals together in an attempt to take advantage of the opportunity that unexpectedly fell in their laps; the Obama administration’s NIH stimulus package.

  • If funded one would determine whether the same genetic factors and intestinal abnormalities are causing the fatigue and pain in irritable bowel syndrome and chronic fatigue
  • Another wide ranging study with researchers from seven different universities would attempt to identify subtypes by measuring autoantibodies against thousands of proteins in the body.
  • Another involving researchers from four different universities including the Walter Reed Army Medical Center would determine if infections or vaccinations could set off an long-lasting autoimmune reaction that causes ME/CFS.
  • Finally the Association already received a grant to host a meeting called "From Infection to Neurometabolism: A Nexus for CFS.". In this meeting investigators from inside and outside the research network will exchange ideas about the cause of ME/CFS.

Not only did Dr. Vernon come up with a very creative set of proposals and she broadened our reach by bringing in new researchers from more universities across the country - a key need in this disease. In a very short time Dr. Vernon has effectively addressed one of the key shortcomings of the research field - no new faces. We should know by October which if any grants to approved.


An Added Bonus - The CAA has required that the studies produce significant results in 18 months - a very short turnaround in the medical field – and a great relief for patients waiting for the results of single studies that last 5 or 6 or even more years.


(Dr. Natelson received the biggest reward of the evening; the Govenor Rudy Perpich Memorial Award – a well deserved award for this very active researcher/physician/advocate/author but Dr. Natelson, himself, is on year six of a grant to study cytokines in ME/CFS that still has not been published. Let’s not even dwell on the infamous Hurwitz blood volume study that ate up more money than any other ME/CFS grant over the past ten years and eight years later still hasn’t gotten into print. The CAA’s demand is a welcome relief to these slower than mud researchers.)


When Dr. Vernon got up to address the Conference she took a close look at the failings of the ME/CFS Research field.



Read more at Phoenix Rising


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