Hi, all.
I was one of the regular posters on this forum who was able to attend the workshop. I gather that many of you were able to follow the action via the web, so you know how the talks and the discussions went. I'll just give some impressions.
First, I would say that there were about 100 people total in the main conference room. I didn't check how many were in the two smaller rooms. The NIH staff people were very pleasant and helpful.
The schedule was pretty full with quite a few relatively short talks, and not a lot of breaks. I think the idea was to be able to hear from as many people as they could fit in, and to cover the main "knowledge" areas, involving people from NIH as well as the main ME/CFS researchers and other major stakeholders, including PWMEs/PWCs.
In order to promote new intramural (inside) research on ME/CFS within the NIH institutes, it is necessary that individual NIH researchers become interested in studying this disorder. So one goal of the workshop is to expose some of them to research on this disorder.
Another goal is to try to promote more extramural (outside) research. This requires having money available, of course, but also encouraging researchers to put in the work required to submit good grant applications, because they have to compete with grant applications for research on a large number of other diseases and subject areas. It's kind of a chicken-and-egg problem. Unless researchers believe there is a good chance to get funded, they won't put in the effort needed to get a grant application together, which is substantial, and which they often aren't paid to do, so they have to fit it in. And, of course, unless good proposals come in, not much ME/CFS research will get funded, which then discourages more applications, etc. So this spiral has to be broken. Another tough problem.
At the workshop, they tried to have time for discussion, but quite a few speakers used up their discussion time because they had more to say than would fit into their time slots. This is typical of scientific conferences, in my experience.
I think the mood was generally pretty upbeat, though you are aware that there were some contentious discussions, and there were also some pretty heavy and heartfelt talks.
My impression was that the NIH people as well as the "outside" attendees were all motivated to try to accomplish something constructive. Of course, one must always keep in mind that we are all very human, and that while everyone may share a common goal, it is still true that "where you stand depends on where you sit."
Another apt old saying is that "honest people can have honest differences of opinion."
O.K., Rich, so much for the cliche's!
I got the feeling that the chain of command in HHS and NIH have gotten the message that ME/CFS needs more attention, and that they are inclined to give it more. At the same time, they can see that the Congress is moving in the direction of tightening up the pursestrings, and they don't know how much wiggle room they will have, so they aren't making any commitments.
It's pretty clear that we can't expect the NIH to re-establish so-called centers of excellence at universities or med schools, as existed a few years back. The view among the management there is that these were very expensive and didn't produce a lot of worthwhile results.
They want the various researchers to communicate and collaborate across the institutions involved, so that they can take advantage of all their expertise. This will be challenging, in my opinion, because the various researchers will have to submit independent grant applications, presumably in competition with each other. Given that, it's not easy to develop collaboration and cooperation. It's a tough problem, especially when there isn't a lot of money, and it's a zero sum game. I do think there was a lot of value in bringing the people together, though, because the better they know each other, the easier it will be for them to communicate.
As far as the technical aspects of the workshop were concerned, I think it did a pretty good job of covering what is thought to be the general "state of knowledge" concerning ME/CFS, except for one area, which happens to be one I think is pretty central to the pathophysiology of ME/CFS, and that is the metabolism, and particularly the energy metabolism, and (you guessed it!) good old methylation! I think I will write to Dr. Mangan about that, because I think an incorrect perception was conveyed that everything is fine with the basic metabolism, and that is really not so.
Oxidative stress wasn't really mentioned, as far as I can recall, and there wasn't a discussion of mitochondrial dysfunction. I would have loved to have raised these points, but as you probably noted, the audience in general was not given the opportunity to comment, and none of the "experts" who had seats at the conference table brought them up. This was not too surprising, because these have not been major research themes among the U.S. researchers.
Methylation was mentioned a few times in the context of gene expression, but not in the sense of a methylation deficit. In fairness, there are no peer-reviewed publications on the methylation deficit in ME/CFS, so anyone who is just reviewing the published literature is not going to find it. There is a lot in the literature about oxidative stress, though, and some about mitochondrial problems.
The other thing that was missing, in my opinion, and has been absent in ME/CFS conferences in the past, is an effort to pull all the pieces together into a coherent model for the pathogenesis and pathophysiology (that is, how the disease gets going, and what the ongoing disease process is). What we have is specialists in various aspects all minutely examining their piece of the elephant, with nobody stepping back to try to visualize the whole animal! Until that is done, I think progress will be slow.
I can understand why this isn't done. Everyone is much more comfortable staying inside their "boxes" than stepping out and talking about things about which they are not expert, risking that someone else will shoot them down. Also, I don't think many people are "generalists," with a broad enough scope in their understanding to be be able to see the connections between things well enough to figure out how the pieces of the puzzle fit together. I think the person who is closest to doing this (beside myself, of course!
is Gordon Broderick, and I had a good talk with him and encouraged him in what he is doing. By the way, he has an engineering background, too!
With regard to the burning issue of XMRV, I guess you saw and heard the dialog. Harvey Alter did a wonderful job of summarizing the issues today, I think. It does sound as though the "round robin" comparisons of measurements on aliquots of the same blood samples that are planned are being carefully thought out and executed, and hopefully they will settle the issue. Unfortunately, this will take quite a bit of time to accomplish, but there appears to be no other way in which this can be done.
I know that this long time requirement is not happy news for PWME's/PWC's, especially those who know they are XMRV-positive.
I met Elizabeth Unger, and you know what? She's really not an ogre!
John Coffin didn't seem like one to me, either. I think he was coming from the point of view that XMRV couldn't be causal for ME/CFS if it developed from two other viruses coming together at a time later than when ME/CFS was first known to appear, and he had reasons to believe that this did happen at a later time. However, it seems to me that XMRV could still be associated with ME/CFS cases after it developed, and could be a contributing cause after that time, even if it were not present in earlier cases.
As you may know, my hypothesis is that several types of stressors, including viruses and retroviruses, but also other biological stressors as well as physical, chemical, and psychological/emotional stressors can be involved in producing the onset of ME/CFS, so this would fit into my hypothesis very well. XMRV does not have to be the exclusive cause of ME/CFS, but could be a current contributor.
I had the chance to talk to quite a few other people there, including people we know and love from this forum (which was a lot of fun), and of course, passed out my propaganda, as I usually do. I brought 100 copies of the slides from my talk at the Yasko Protocol Conference in Boston last summer, and most of them were picked up by people at the workshop.
All in all, I think it was a worthwhile experience, and I'm glad I came. It remains to be seen what the results will be over time.
Best regards,
Rich
