CFS & Fibromyalgia Research updates

[Guest guest]

from Dr Teitelbaum's newsletter:

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 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

<http://www.mcsrr.org/resources/articles/P11.html> 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

(a superbly knowledgeable CFS specialist) showing that the

theories proposed by Dr. Rich Van Konynenburg, Ph.D and Dr. 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 <http://www.FibroandFatigue.com>. 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. 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 Pall. Most of the treatments that

would help this problem are already addressed in the " SHINE Protocol

<http://www.endfatigue.com/treatment_options/Shine_treatment_protocol.html> "

we discuss in From Fatigued to Fantastic!

<http://www.endfatigue.com/store/products/publications/from-fatigued-to-fan/>

(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

<http://www.endfatigue.com/store/products/publications/from-fatigued-to-fan/>.

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 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.

[Guest guest]

Thank you Doris!  I'll be reading.

________________________________

From: Doris and Steve <sjsmith@...>

< >

Sent: Wednesday, October 22, 2008 4:09:42 AM

Subject: CFS & Fibromyalgia Research updates

[Guest guest]

Hi ,

I too have CFS/Fibromyalgia and I was wondering what the new research update was

can you please let me know. thanks, May

---- <thecolemans4@...> wrote:

> Thank you Doris!  I'll be reading.

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> From: Doris and Steve <sjsmith@...>

> < >

> Sent: Wednesday, October 22, 2008 4:09:42 AM

> Subject: CFS & Fibromyalgia Research updates

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