Finally, after waiting for what seems an eternity, the NIH State of the Knowledge Workshop list of speakers has been posted. As I scroll through the two-day agenda, I find many pleasant surprises as well as a few unpleasant not-so-surprises.
The conference has a powerful kick-off. Anthony Komaroff and Leonard Jason start, delivering speeches on the clinical presentation, diagnostic criteria, and clinical definitions of Chronic Fatigue Syndrome.
I am very happy to see Harvey Alter as co-moderator for the infectious diseases segment. Ron Glaser will be there to represent EBV, John Chia will tackle enteroviruses, and Judy Mikovits will cram a ton of information about XMRV into 20 minutes. Bringing up the rear is John Coffin, to hopefully tell us that he realizes that “recombinant” and “contaminant” don’t mean the same thing.
The CDC is sending their representative, Magalathu Rajeevan, who will tell us about genomic studies. Although the very sound of those letters…”CDC” has come to cause a kneejerk reaction of imminent nausea, it’s nice to see them on the agenda with something to say other than “stress-related-to-childhood-abuse”.
Benjamin Natelson is on board. Dr. Natelson recently gave us the study that showed the differences in proteins in the spinal fluid of CFS patients, Lyme patients, and healthy controls.
Post exertional fatigue is getting a strong representation, as it should since it is The Hallmark Symptom of this disease. Kathleen Light, Christopher Snell, and others will make presentations on their research into the subject, and orthostatic intolerance is getting a good presence as well.
Many names well-known to the community appear in the diagnosis and treatment segments of the conference. Nancy Klimas, Fred Friedberg, Lucinda Bateman, and Dane Cook all make appearances, among others.
Now, this is where it gets a little bizarre. Kim McCleary will kick off the second day after-lunch segment with a speech on communicating. Of all the topics for her to speak about…and of all the people who may have been chosen to speak on this subject…I cannot imagine a worse match. There are many other subjects McCleary could have spoken about…funding and research come to mind. There are many more qualified speakers to address the subject of “communicating”. But communicating is one of the things that McCleary is miserably bad at, as evidenced with years-worth of documentation.
But the follow-up team looks good. Kenneth Friedman will talk about the impediments to research, and he has a knack for driving a point home. His presentation should be well-worth watching.
Our patient representatives, Pat Fero and Mary Schweitzer, will follow Friedman’s presentation. Pat will talk about CFS from the perspective of three generations, and Mary will talk about the role for the internet in communication. I’m really hoping that she will address the need for agencies and media to use the internet in the way we suggested in our petition…to bypass the CAA as a source for information.
I suppose it was to be expected that the final summary would be co-moderated by Dennis Mangan and Suzanne Vernon. It only seems a given that the CAA would insert themselves this way, as an officiating presence at a meeting of this magnitude. I sincerely hope she learns something.