John Herd has been called a “founding father” of CFS patient advocacy. He has attended almost every ME/CFS conference since the late ’80s. But at the 2007 IACFS conference, he reports, he saw something entirely new: “The ME/CFS community is no longer confined by national borders. We are all in this together.”
Little by little, patient advocates are beginning to produce their summaries of reports from the 2007 IACFS professional and patient conference in Florida. It’s a gradual process because five days of conferencing would be hard on anyone…and it's far harder on ME/CFS patients. And there's an immense amount to talk about pertaining to what transpired at the conference. The scientific reports were absolutely breathtaking, though so technically rooted in science that many are hard to get your head around without interpretation.
The Conference ‘Stress Test’
Truth be told, the conference is as tough a stress test as doctors could devise for ME/CFS patients. Advocates who attend the IACFS conference deserve a lot of credit and recognition for exhibiting such a level of commitment that they'd be willing to put themselves through such a grueling exercise in order to represent the patient community.
The Science, Once So Scattered, Is Converging
In a nutshell, the science behind all the remarkable reports we heard at this conference is freeing us from any doubt that ME/CFS is a very real disease with an etiology not rooted in the psyche.
This science is a dragon slayer, and the dragon is the bygone ‘all in the head’ dogma that no one - not doctors, not governments, not the public - is going to be able to hold onto much longer. That said, I’ll let others begin to report in lay terms on all the scientific headway presented at the conference.
What I will say now is that the conference had a very different feel to it than the past five IACFS conferences I've attended. On my way home I realized why: It was convergence.
In the past, conference sessions reported on many kinds of interesting but seemingly unrelated small pieces of the biologic ME/CFS puzzle. These pieces represented scientists reaching out in many directions to grasp little pieces of the puzzle, but there was little sense of connectedness.
The science reported at this year's conference felt very different. It seemed like much of it was different kinds of science coming together - each building on the other with associations. It felt like finally the many small pieces of the puzzle were finally beginning to reveal a cohesive picture, the picture of what ME/CFS really is.
The Experts are Acting Like a Global Team
Instead of the doctors and researchers seeming to be scientific athletes, each playing his or her solitary sport, they and their work seemed to be a team sport. The players and their activities (their scientific findings) harmonized in a fashion that gave confidence we're closing in on answers we've long sought.
In addition to the convergence of ideas, the conference embodied a remarkable physical convergence. Nancy Klimas, MD, president of the IACFS, announced that there were doctors present from some 28 different counties. That's 28 countries where clinical and research experts will be carrying back and sharing the latest knowledge to help patients and ignite more research.
For example, I met one marvelous doctor from South America who realized not only that her country was offering almost nothing for ME/CFS patients - but that she herself knew very little about the illness. She wasn't just attending the conference…she's been doing an extended medical fellowship here. And now she can return to her country with knowledge that will benefit many.
There were too many doctors from too many countries to mention them all. But just for example:
n Vance A. Spence, PhD, attended to share the work that ME Research UK has been conducting, and to bring back to the UK knowledge that may help to change things there. His organization http://www.meresearch.org.uk/ is a charity dedicated to funding ME/CFS research and publishing the results.
n Jonathan Kerr, MD, PhD, was also at the conference, sharing his stunning genetic work. Dr. Kerr, a professor of microbiology at Imperial College, London, is studying the mechanisms of gene expression in ME/CFS.
n Doctors from Japan reported on many kinds of work they're conducting, which sound as though they’ll make tremendous contributions to our understanding of the illness.
Patient Advocates Connecting Globally Too
Just as there was a strong sense that the experts are cooperating to build on each other's findings and work in unison, the same was true of the international patient advocate gathering.
In the context of the IACFS dual conference, advocates from across the U.S. and different countries had an unparalleled opportunity to meet and share their knowledge, talk shop amongst each other, and lay plans for the future.
This Organization is Very Definitely International
Let no one doubt that the IACFS has gone international. It is very much a global organization with global reach. In keeping with that international mission, and because the illness is know as 'ME' throughout much of the world, the organization has decided to change its name to the IACFS/ME - based on a poll of its members.
The take-away message? The ME/CFS community is no longer confined by national borders. We are all in this together.
Special Thanks to Special Volunteers
Finally, on behalf of all who will benefit from this international sharing, we owe special thanks and recognition to PANDORA – the conference’s host and co-sponsor. Kudos to President Marla McKibben Silverman, Vice President Rebecca Artman, and the other PANDORA volunteers for their enormous contributions to the conference.
Their work, along with the IACFS leadership's work, made this 2007 conference the most profoundly important conference and meeting of minds we've ever seen in the history of ME/CFS.