(From Co-Cure) Buried in the latest CDC paper on CFS (corresponding author is James (Jim) Jones and Bill Reeves also signed it: ---------- An evaluation of exclusionary medical/psychiatric conditions in the definition of chronic fatigue syndrome. Jones JF, Lin JM, Maloney EM, Boneva RS, Nater UM, Unger ER, Reeves WC. BMC Med. 2009 Oct 12;7(1):57. http://www.biomedcentral.com/1741-7015/7/57 ---------- is the following: "As those with CFS suffer from personal, social, workplace  and observed financial losses , should not all individuals fulfilling CFS inclusion criteria, with or without exclusionary diagnoses, be considered in future public health planning? For instance, would both groups benefit from prevention and intervention efforts such as cognitive behavioral therapy and graded exercise therapy [24, 25]? A similar question could be asked of those who are unwell but who do not reach the diagnostic threshold." 24. Edmonds M, McGuire H, Price J. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2004, (3): CD003200. 25. Price JR, Couper J: Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 1998, (4): CD001027. ----- This comment seems to presume that (i) public health planning should plan for CBT and GET for those with CFS and (ii) that it could be unfair if those that had a CFS-like illness but had an unexclusionary diagnosis, as well as those who are unwell, are not offered these interventions. This gives an insight into what the CDC has in mind for CFS. Even this talk of CBT and GET as prevention for CFS is a thing that only "extremists" (in terms of GET for CFS) like Peter White talks about. Of course, at the last CFSAC meeting, Dr Reeves said the following about Peter White: "He's an unusually intelligent individual" (see below for a repeat of some of the comments referencing the UK system). So, I think if people are not careful, the CDC are going to be coming with guidelines similar to the (UK) NICE guidelines recommending GET and CBT based on GET (see more quotes below). This will not just affect people in the US but people around the world - in Ireland up to now, we have been able to use some of the information on the CDC website to counterbalance guidelines such as the NICE guidelines. But if the CDC guidelines also recommend GET and CBT based on GET, everything becomes more difficult. Tom Kindlon =========== http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac052709min.html At the May 2009 CFSAC meeting, we heard - "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." - ""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." - "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." - "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." - "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."