Dr. Jacob Teitelbaum's Column ...expert advice on CFS, Fibromyalgia and other Health Topics.

Monday, October 27th, 2008:

CFS & Fibromyalgia Research Updates — the Sonoma Working Group

 

by Jacob Teitelbaum MD

 

 

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 treat 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:

 

A. A review of mycoplasma and other antibiotic sensitive infections in CFS by Dr. Garth Nicholson.

B. 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.

C. 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.

D. Dr. Joe Burrascano, noted Lyme disease expert, discussed the role of tick borne infections and extended antibiotic use.

E. 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). Click here to read more on this research by Albert Donnay.


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:

 

A. 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 treatments. I will be doing an article on a simplified approach to this protocol in an upcoming newsletter. In the interim, I have given the directions on how to do this protocol to some of the physicians at the Fibromyalgia and Fatigue Centers. Feel free to ask them about it, and they can contact me for more information on implementing it, or the details if they have not yet seen it.

B. 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.

C. Nitric Oxide (NO/ONOO cycle) issues—This is the research and theories proposed by Professor Martin Pall. Most of the treatments that would help this problem are already addressed in the “SHINE Protocol” we discuss in From Fatigued to Fantastic! (FFTF).

D. 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:

 

A. 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 treatment in the future. The heart problems were largely reversible or inducible—usually within minutes—as various treatments were applied.

B. 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 treatment possibilities!

 

Used with permission from Dr Jacob Teitelbaum's free newsletters-available at www.Vitality101.com

Learn more from Dr. Teitelbaum's books:

	From Fatigued to Fantastic!: A Proven Program to Regain Vibrant Health, Based on a New Scientific Study Showing Effective Treatment for Chronic Fatigue and Fibromyalgia Buy from Amazon.com Buy From Amazon.co.uk
	Pain Free 1-2-3: A Proven Program for Eliminating Chronic Pain Now! Buy from Amazon.com Buy From Amazon.co.uk

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written by Julie Shrive, October 30, 2008

Dr Cheney may be interested in me .Had CFS . fibromyalgia diagnosed by Dr John Davies10 yrs ago . MI 2 yrs ago suspect stroke waiting to happen about to see Prof Matthias [ syncope]also have apnea comotosing omn eating daily then disturbed sleep .Also have spina bifida occulta & chronic utis.

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written by Anonymous, May 10, 2009

I saw Dr. Cheney for the first time in Feb 2009 and had the bison heart applied to my skin during an echo and haven't been the same since. When the statement is made that it can either reverse or induce symptoms, it induced new symptoms I'd never had before and three months later I still have the symptoms. I would like to know if anyone else has ever had this experience.

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written by Joe, May 23, 2009

Sorry to hear about that...has Dr Cheney given you an explanation for this effect?? I too am getting pretty desperate and was half considering trying to get an appointment with Dr Cheney...but I'm not so sure now!! My main symptoms are stress, mental fatigue and tension, bodily tension, lacking breath and fatigue.

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written by Maff, May 23, 2009

Hi Joe,

Have you looked into adrenal and thyroid issues? I have suffered from CFS since 1991 (when I was aged 12) and have benefitted greatly over the last 5 years from taking DHEA (an anti-stress adrenal hormone) and T3 (the most active thyroid hormone). My most troubling symptoms have always been those that you are also struggling with. I would recommend you have an adrenal stress index (ASI) and full thyroid blood profile carried out. Please have a look at these pages:

Adrenal Fatigue
Hypothyroidism

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