(From Co-Cure) I thought I would draw attention to the following quote by Dr. Bill Reeves from the minutes of the CFSAC meeting, May 2009 (pp.60) http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac052709min.pdf "The other problem is that in studies that we've recently published, a large proportion of people who have CFS have serious psychiatric overlays. Those need to be considered as well. But that isn't saying that that is the cause of your illness; that is saying that that is something that needs to be taken care of because it's there with your illness. You cannot ignore it. There is unhappiness with CBT because CBT is "all in your head." Many of you knew me when I was walking on a crutch with a ruptured quadriceps tendon and a year's worth of surgery. A huge part of the rehabilitation therapy was CBT to help me understand what was happening, understand how I could cope, and understand what was expected." The first point is that the empirical definition has increased the percentage of people with psychiatric issues (many of them may not have CFS as normally defined at all). But the main issue I want to point is that I do not believe Dr Bill Reeves had CBT for his ruptured quadriceps tendon. CBT is not something that is normally offered for a problem like that. And I'm not sure Dr Reeves would have gone to regular sessions with a psychologist (on top of time spent with a physical therapist/physiotherapist). If it is the case that he has not gone for CBT, he is either being misleading or, and I think this is more likely, he does not understand what CBT is. CBT is designed for maladaptive beliefs and behaviours. It if involves a lot of homework where you have to keep diaries. Other psychologists can probably describe it better than me but one can give coping skills training and education on the condition without giving CBT. Dr Reeves' understanding of CBT is important given the CBT want to draw up management and treatment guidelines including guidelines which have an international consensus (getting a consensus on management guideliens would seem very hard to do unless you don't pay attention to the people who propose a pacing model or an envelope theory model for how to manage CFS - these are very different from the graded exercise model (which is the basis of the CBT model for the illness). As I pointed out before, at this meeting, Dr Reeves said: "CBT GET. We are in the process of planning a cognitive behavioral therapy (CBT) and graded exercise (GET) trial as part of the provider registry population in Macon. We're going to do that in collaboration with the providers in Macon, with Mercer Medical School, with the U.K. group, and with Mayo Clinic. Obviously, CBT GET is not the cure for everybody. Nobody knows for how many it is. It probably applies to a subset." What he is saying is that CBT GET is a cure for some people with CFS. Most people in the field don't talk as if CBT is a cure for some percentage of people with CFS. Two of the few that do are Peter White and Gijs Bleijenberg. I'm appending a selection of other quotes from the meeting by Dr Bill Reeves on the issue of CBT, GET, Peter White and the situation in the UK. Tom ------- CFS Program Five-Year Goals [..] "International Workshop - Research, Clinical, and Pediatric Definitions of CFS - I would like to try to get together by the winter of 2009. I know the IACFS/ME is interested in this. We want to include countries such as UK that have CFS care completely integrated into their healthcare system." (TK: that's CBT/GET and very little else (the NICE guidelines recommend against other treatments and against most testing (except basic testing to rule out other conditions)) ----- Dr. Oleske (Chair of the CFSAC): I'm going to open it up to questions from the group. The only thing I want to say, Bill, is I was interested in your comments about the international community and how much effort will be put into that. While I have no problem with international collaborations, I have to say that I think there are times when the domestic agenda suffers at the behest of an international agenda. I just hope that we don't dilute the concentration on the US. I want to ask you to comment about that. Dr. Reeves: An excellent comment. Our focus is obviously on the United States. There are three important reasons for international collaboration. One of them I alluded to. There are countries that have put CFS evaluation, diagnosis, and management into their national health systems. The UK is one of those. An international meeting provides the chance to learn from another government that has embraced this illness- perhaps not to the extent that everybody would like-but is trying to work with it as a national health service. ----- Ms. Artman (member of CFSAC committee): I want to stay on the international theme. Before this meeting, I sent out a query to those who participated in the CDC stakeholder meeting to find out what they had to say, because I was ill and couldn't attend. Just about everyone came back with comments about either Simon Wesley or Peter White treating this as a purely psychiatric disorder and not as a multi-system complex disorder. There's a perception that in working with the UK, we are adopting that this is a purely psychiatric disorder. This is a big patient perception issue with the CDC. It's not what you're actually doing; it's what we perceive that you're doing. You need to really place an emphasis on how you want the patient community to view what the CDC is doing. Japan is doing such remarkable research, I would hope that whatever you do, you pull the Japanese in. I love what they call it: burnout syndrome. Their whole concept is that you do too much and get sick, not as the US tends to think, that we're malingerers. I just want to ask you so it's on the record out there for everyone-what is the CDC's take on this? Do you see it as a purely psychiatric illness? Dr. Reeves: Of course it is not. One of the very first things that I highlighted out of the stakeholder meeting is that communication has not been optimal. Peter White, the psychiatrist that we work with at Emory, does not look upon CFS as a psychiatric illness. What they are extremely interested in at Emory are the neurologic and brain pathways that mediate this. That is one of the things that Peter White really added to the peer review-he is an expert on autonomic nervous system function. The fact that certain investigators have a reputation in a certain component of the community for thinking that CFS is all in the patient's head is a result of the CDC's problems with communication. (TK: I believe most people would question why a major body like the CDC, if it needed a person who was an expert in the autonomic nervous system for a peer review, would bring in Peter White to do it! And regarding the last sentence, people like Peter White have a "reputation" for what they say and do - it's not simply because people picked them up incorrectly) ---- Dr Bill Reeves: "The collaboration with Peter White is largely because Peter White came to us when the national health service in the UK was trying to design its program and formulate recommendations about what the health service in the UK should do. We've consulted with them as far as our ideas and our expertise, and we collaborate with Dr. White on the PACE trial. He's an unusually intelligent individual-you've read some of his comments on some of our articles-whom we enjoy sparring with. He is an expert on autonomic nervous system function and he's highly instrumental in all of the hurdles, both with patients with the government and with physicians, in trying to put together, given the current state of knowledge, a national program." --Another quote-- "Dr. Miller (from the CDC): I think that my goal in terms of intervention is that we get to a point sometime during the five-year plan where we're ready with the defined study population, we implement some intervention that shows promise, and we're to measure the impact of that intervention. Dr. Reeves: We talked about a collaboration with Mayo on a CBT/GEBM intervention. That's two years out, maybe more."