CFS & Fibromyalgia Research Updates - the Sonoma Working Group

This issue will be devoted to reviewing some of the recent new research related to CFS and fibromyalgia. In addition, I would like to report on the 2nd annual meeting of the Sonoma Working Group, which was held September 24-28, 2008 in Sonoma California. This group is composed of 30 of the world's leading CFS researchers and clinicians. Each year we are brought together to compare notes and teach each other what we've learned. We have also been offered what may be the largest CFS research grant ever given, with our instructions being to explore the causes of CFS and to determine how to address it effectively. I am honored to be the Chairman of the Protocols Committee for this study.

With 30 very bright and very opinionated CFS researchers, the sparks were flying—and everyone learned a lot! In this article, I am happy to give an overview of some of the ideas that I found to be most interesting.

Overall, there is a growing consensus that there is an energy crisis occurring in CFS and that many of the symptoms in CFS are actually the body's way of protecting itself when it can't make the energy it needs. There is also increasing agreement on hypothalamic dysfunction (like "blowing a fuse" ) being present. Research presented focused on several key areas. These included:

1. The causes of the energy crisis. This included studies on the role of infections in causing or perpetuating CFS as well as carbon monoxide sensitivity being a cause in those with MCS (Multiple Chemical Sensitivity) combined with light, sound and taste sensitivity. The talks included:
   
   1. A review of mycoplasma and other antibiotic sensitive infections in CFS by Dr. Garth Nicholson.
   2. Dr. Liv Bode presented the research done by a pair of German scientists showing that stomach Borna virus infections are very common in CFS, and often improve with the use of an old antiviral drug called symmetrel (amantadine), which is helpful in some CFS patients.
   3. Professor Kenny DeMeirleir discussed the presence of Parvo virus infections in the stomach, as well as the role of bacterial bowel infections. He found that instead of the normal E.Coli bacteria present in the gut, large levels of lactic acid producing gram positive bacteria are present.
   4. Dr. Joe Burrascano, noted Lyme disease expert, discussed the role of tick borne infections and extended antibiotic use.
   5. Research in patients with Multiple Chemical Sensitivity in association with light, sound and/or taste sensitivity and a specific set of facial features that may be associated with carbon monoxide poisoning (requiring specific tests and which improves after 4 months of using oxygen a few hours a day).
2. What is the biochemistry that causes some people to get CFS and that causes the energy crisis in response to whatever triggered the CFS? This included work on:
   
   1. Methylation Cycle Defects—This is research presented by Dr. Neil Nathan (a superbly knowledgeable CFS specialist) showing that the theories proposed by Dr. Rich Van Konynenburg, Ph.D and Dr. Richard Deth are on the mark. Although not placebo controlled, the study suggested that a mix of nutrients supporting “Methylation” can be helpful in CFS—especially those that have failed other therapies. I will be doing an article on a simplified approach to this protocol in an upcoming newsletter.
   2. Oxidative stress—There appears to be difficulty handling energy production using oxygen. Work by Dr. Paul Cheney showed that oxygen is actually toxic in CFS, and that many of the changes in CFS are caused by the body adapting to protect itself against oxygen toxicity.
   3. Nitric Oxide (NO/ONOO cycle) issues—This is the research and theories proposed by Professor Martin Pall. Most of the therapies that would help this problem are already addressed in the “SHINE Protocol” we discuss in From Fatigued to Fantastic! (FFTF).
   4. Cytokine (immune chemical) abnormalities, including TGF Beta 1. This included research by Dr. Ritchie Shoemaker, who developed the neurotoxin theory of CFS discussed in FFTF. He also took on the task of keeping us all intellectually and scientifically honest during the weekend.
3. The downstream effects of the energy crisis which then directly triggers symptoms. These included:
   
   1. Research by Paul Cheney on the marked heart function abnormalities seen in CFS. He uses very specialized echocardiography to measure this, and documented toxicity when given oxygen. He showed research suggesting that bison heart growth factors applied to the skin may be a very promising therapy in the future. The heart problems were largely reversible or inducible—usually within minutes—as various therapies were applied.
   2. I discussed hypothalamic dysfunction and the associated sleep, hormonal and autonomic dysfunctions (low blood pressure, sweating, etc.) caused by this dysfunction. This then can cause the hormonal, sleep and autonomic dysfunctions seen in CFS.

As you can see, our understanding of this illness continues to grow, offering new therapy possibilities!