Fibromyalgia Support Group for Surrey and Sussex

IACFS Conference
With acknowledgement to John Herd

a CFS Advocate from Southern California

Don't be surprised if it takes a little while for patient advocates to begin getting reports out from the International Association of Chronic Fatigue Syndrome (IACFS) conference. Five days of conferencing is hard on anyone -- it's far harder on ME/CFS patients. Truth be told the conference is as tough a stress test as doctors could devise for ME/CFS patients. Post IACFS conference pay back has always slowed down dialogs between, and advocacy from, patient attendees until they've had time to recover.

As a side note, patient 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 gruelling exercise in order to represent the patient community.

That said, 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 were hard to get your head around. That's not bad though -- it's that science that is today freeing us from any doubt that ME/CFS is a very real disease with an etiology not rooted in the psyche. That science is a dragon slayer and the dragon is the bygone "all in the head" dogma that no one, not doctors, governments nor the public is going to be able to hold onto much longer.

I'll let others begin to report on all the scientific headway presented at the conference as my head is still cruising at 36,000 feet somewhere between Florida and California. What I will say is that the conference had a very different feel to it than the past 5 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 converging, each building on the other with associations. It felt like finally the many small pieces of the puzzle were coming together to finally begin revealing a cohesive picture, the picture of what ME/CFS really is. Instead of the doctors seeming to be scientific athletes, each playing their 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.

The doctors present were also literally converging, not only ideologically, but geographically. Nancy Klimas announced that there were doctors present from (I believe) 28 different countries. That's 21 countries in which doctor will be carrying back the latest research to ignite more research and to help patients.

I met one marvellous doctor from South America who realized that not only did her country offer almost nothing for ME/CFS patients there, but that she knew very little about the illness. She wasn't just attending the conference -- she's been doing an extended medical fellowship here so she can return to her country with the knowledge to help ME/CFS patients there. That's one truly amazing level of commitment and generosity on her part.

This clinician was just one of the many to be carry home the gifts of knowledge to their homelands so many people with ME/CFS may benefit. Vance Spence attended to share the work that ME Research UK has been conducting and to bring back science to the UK that I hope may help to change things >in that country. Dr Jonathan Kerr was also at the conference, sharing his stunning genetic work. Doctors from Japan reported on many kinds of work they're conducting, work that sounds like it will help tremendously to better understand the illness.

There were too many doctors from too many countries to mention them all, but one thing was clear -- there was a strong sense they were all cooperating with one another to build on each other's work and to work in unison. The same was true of the patient advocates from the various countries represented. In part that is due to the IACFS bringing them all together, the doctors and advocates, so they could share their knowledge, talk shop amongst each other, and lay plans for the future.

Let no one doubt that the IACFS is no longer a national organization -- it is very much an international organization with an international reach. In keeping with that international mission, and because the illness is known as M.E. throughout much of the world, the organization is changing its name to the IACFS/ME. ME/CFS no longer has the confinement of borders. We are all in this together.

In closing, I want to give a special thanks and recognition to Marla McKibben Silverman, Rebecca Artman and the other PANDORA volunteers for their enormous contributions to the conference. Their work along with the IACFS/ME 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.

The health professionals in the USA are really so many years ahead of us in the UK. PANDORA stands for Patient Alliance for Neuroendocrineimmune Disorders Organisation for Research and Advocacy.