For sites that present research -
 see DirectQuest Directory of Fibromyalgia : Research

http://groups.yahoo.com/group/FMS-CFIDS-MCS-education/ This egroup is dedicated to the dissemination of accurate information on FMS/CFIDS/ME/MCS.     This is not for chat; although questions and answers are welcomed.  


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Misc  News & Updates  :

7/20/00   5:20 pm Chan 6 in Phila reported that a Kevin Hacksaw at Ohio State has made a connection between FM & allergy - gives patients antihistimines to relieve symptoms ...  

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Are CFIDS and FMS the same thing -  Here is an article on that hypothesis
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A chat on the latest  directions in Research by Sharon Clark is found on Web Md   This covers discussion  areas such as  exercise,  Dextromethorphan , NMDA receptors  - pain perception , plasticity ("rewiring"of the central nervous system)  cervical spinal stenosis , (B/U-PF)
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3/00  A Jury awards over two million to a worker who had an incident on a ladder that led to chronic fibromyalgia pain & symptoms --- http://www.lawnewsnetwork.com/stories/A19017-2000Mar17.html
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12/1/99 Chronic Pain - tests show that by targeting and destroying certain selected neurons with molecular "bombs" - severe chronic pain can be reduced.
http://www.thirdage.com/news/archive/991201-03.html?std
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Enzyme - A teenager has apparently proved that MCS, EI, MF, and CFS are similar organic disorders -- linked by a defect in an enzyme. She has not only proved it, but has also been recognized for it at an international contest.  http://www.treatmentchoice.com/teen.html

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In 1998, the insurance companies eliminated "fibromyalgia" as a diagnostic ICD code. Fibromyalgia 729.1, is now  "myalgia and myositis, unspecified"   removing 6-10 million  patients from research and accountability describing fibro as "simple aches and pains." In 1999 the ICD was revised  780.71   "malaise and myalgia" is  "Chronic Fatigue Syndrome"!!aiding accountability and potential research for CFS & impacting insurance reimbursements & potential disability insurance! See full info on this at :

The CFIDS/FMS/MCS/GWS Information page

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4/10/98

RESEARCHERS FIND PHYSICAL PROOF OF FIBRO PAIN
Friday, April 10, 1998

ABC News reported today on a study at the University of Alabama which found decreased blood flow to areas of the brain which deal with pain and twice the normal level of a brain chemical called Substance P in patients diagnosed with fibromyalgia. more on this

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11/97 Florida Researchers look for diagnostic tool
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11/25/97 Re activism
Petitions
Names are still being collected for the FMS/MPS Petition to Congress.Names have been submitted from 48 states, D.C., and Canada, but we need many more to present to Congress the strength of our numbers! Please stop by FibroWorld and sign the petition if you have not done so already.
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Niteline
Brad Phillips, Production Coordinator of Niteline, has stated that he has submitted Fibromyalgia as a story idea to the producers of Nightline, due to the large amount of mail they received from FMers after the "hoax" email.
Please keep writing those letters to Nightline, this time in support of them doing a show about Fibromyalgia; help convince the producers that there is enough interest in FMS to do a show about it!

Please send an e-mail or snail mail to Nightline, strike while the iron is hot! If they receive enough mail in support of doing a show on fibromyalgia, it is more likely that the producers will agree to do the story! Now is the opportunity, let's not let it slip through our fingers; please take a few moments to write a note to Nightline!
(please send a copy of your letter to: KpDancin2@aol.com, she is compiling the letters to Nightline)
email:
NITELINE@abc.com 
-copy your letter to: KpDancin2@aol.com
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Snail Mail Addresses:
Nightline Address
ABCNEWS Nightline
1717 DeSales St., N.W.
Washington, D.C. 20036

Story Ideas
ABCNEWS Nightline Attn: Story Editor 1717 DeSales St., N.W. Washington,
D.C. 20036 Or e–mail niteline@abc.com

Other ways to Contact Nightline
Nightline Audience Relations, 212-456-7477

For more info stop by the Fibro World site

11/24/97 Re: Legislation

Senator James Rhoades, a Republican state senator in Pennsylvania, has
introduced legislation to create an Office of Disability Services for the
state. The new office would coordinate various disability services to make
sure that disabled people have access to all the different programs they are
eligible for. There would be 15-30 regional points of access which will be
"consumer controlled," meaning that at least 51 percent of both management
and staff would be disabled people.
Twenty other Pennsylvania senators have co-sponsored the bill.
For more information, you can contact the Pennsylvania Senate Republican
Communications Office in Harrisburg, Pennsylvania. >>

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7/29/97
RESEARCHERS FIND NEW ENZYME IN CHRONIC FATIGUE SYNDROME PATIENTS; DIAGNOSTIC MARKER FOR COMPLEX ILLNESS POSSIBLE

LARCHMONT, N.Y., July 29 /PRNewswire/ -- In the July issue of Journal of
Interferon & Cytokine Research (Vol. 17, No. 7) published by Mary Ann Liebert, Inc., Robert Suhadolnik, MS, Ph.D. and his research team at Temple University School of Medicine reported that studies of patients with chronic fatigue syndrome (CFS) have led to the identification of a new human enzyme.
Dr. Suhadolnik, a professor of biochemistry and a member of the university's Fels Institute for Cancer Research and Molecular Biology, says of the new  findings: "We are greatly encouraged by the trend we see. All CFS patients tested have this new enzyme, while none of the healthy controls do." The
findings, reported in the "Journal of Interferon and Cytokine Research" are based on data from a limited number of patients. However, larger studies are already underway and have attracted financial support from the National Institutes of Health.

The "Journal of Interferon and Cytokine Research" is the primary source for the rapid publication of original manuscripts (in all the varied aspects of research on the Interferon and cytokine systems, including all basic and clinical studies. The "Journal of Interferon and Cytokine Research" is the
official Journal of the International Society for Interferon and Cytokine Research.

Chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex illness characterized by incapacitating fatigue, neurological problems and a constellation of other debilitating symptoms. The cause of the illness is unknown and since no drug as been found to be effective against CFS, treatment is limited to alleviating the symptoms. CFS affects at least 500,000 American adults and
children.

The newly discovered enzyme, which has a lower molecular weight than the normal enzyme found in the viral pathway in which this protein is active, may explain common observations in patients with CFS: an inability to control common viruses (like Epstein-Barr virus and human herpesvirus 6) and an
inability to maintain cellular energy. According to Dr. Suhadolnik, the viral pathway known as the 2-5A synthetase/RNase L antiviral pathway may
control both processes. "This new enzyme in CFS may not function as well as the normal RNase L found in healthy people. It may explain why CFS patients' bodies have a hard time maintaining the energy necessary for cellular growth."

The newly published study also indicates that the presence of the low molecular weight enzyme and the absence of normal enzymes may be related to
the severity of CFS symptoms. While all CFS patients tested positive for the low molecular weight enzyme, some also had the normal RNase L. "It is interesting to note," said Dr. Suhadolnik, "that extracts from the most severely disabled individuals with CFS in this study contained only the low
molecular weight enzyme."

"Because the new enzyme has been found in CFS patients but not in healthy controls, it is, potentially the basis for a laboratory test for CFS, which is diagnosed today only through its clinical symptoms," says Dr. Antonio Goncalves, associate vice provost for science and technology at Temple University. The university has filed a patent application for such a test
and is seeking a corporate partner to further develop and license the test. Dr. Goncalves and Dr. Suhadolnik caution, however, that additional studies of much larger patient populations are required before the clinical utility of the test can be demonstrated.

The new findings add to mounting evidence of subtle, yet striking, abnormalities found in people with CFS. "We are hopeful that ongoing further studies will lead to a better understanding of some other processes at work in this puzzling illness," said Dr. Suhadolnik.

This study was funded by the U S. Public Health Service and The CFIDS Association of America, the nation's largest and most active charitable organization dedicated to conquering fatigue and immune dysfunction syndrome (CFIDS).

FACT Sheet

Title: "Biochemical Evidence for a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue Syndrome"
Authors: Robert J. Suhadolnik, Daniel L. Peterson, Karen O'Brien, Paul R. Cheney, C.V.T. Herst, Nancy L. Reichenbach, Ning Kon, Susan E. Horvath, Kathryn T. Iacono, Martin E. Adelson, Kenny De Meirleir, Pascale De Becker, Ramamurthy Charubala, and Wolfgang Pfleiderer.
Published in: Journal of Interferon and Cytokine Research, July 17, 1997
Footnotes: This work was supported by research grants from The CFIDS
Association of America, Inc., and the U.S. Public Health Service awarded to
Robert J. Suhadolnik
Abstract: Previous studies from this laboratory have demonstrated a
statistically significant dysregulation in several key components of the 2, 5-oligoadenylate [2-5A] synthetase/RNase L and PKR antiviral pathways in chronic fatigue syndrome (CFS) [Suhadolnik et al., Clinical infections
Diseases 18: S96-104 (1994), Suhadolnik et al., In Vivo 8; 599-604 (1994)]. Two methodologies have been developed to further examine the upregulated RNase L activity in CFS. First, photoaffinity labeling of extracts of peripheral blood mononuclear cells (PBMC) with the azido 2-5A photoaffinity
probe, [P] pApAp(8-azido A), followed by immunoprecipitation with a polyclonal antibody against recombinant, human 80-kDaRNase L, and analysis under denaturing conditions. A subset of individuals with CFS was identified with only one 2-5A binding protein at 37-kDa, whereas in extracts of PBMC
from a second subset of CFS PBMC and from healthy controls,
photolabeled/immunoreactive 2-5A binding proteins were detected 80, 42, and 37 kDa. Second, analytic gel permeation HPLC was completed under native conditions. Extracts of healthy control PBMC revealed 2-5A-dependent RNase L
enzyme activity at 80 and 42 kDa as with 2-5A-dependent RNase L enzyme activity at 80, 42, and 30kDa. However, a second subset of CFS PBMC contained 2-5A-dependent RNase L enzyme activity at only 30 kDa. Evidence is provided indicating that the RNase L enzyme dysfunction in CFS is more
complex than previously reported.

Abstract Summary: Dr. Suhadolnik and his team have found a new form of RNase L in the peripheral blood mononuclear cell extracts of people who meet the CDC case definition of chronic fatigue syndrome. (RNase L, is a protein
found in the antiviral pathway). It is not found in the extracts from healthy persons. Earlier studies by his laboratory found an upregulated 2-5A synthetase/RNase L pathway in CFS patients compared to healthy controls.
Pronunciation: RNase L (pronounced: "Are Nace Elle")
Suhadolnik (pronounced: "Sa-dol-nik")

Additional Information: For a copy of the article, contact
Janna Magnusson
Mary Ann Liebert, Inc.
2 Madison Avenue
Larchmont, NY 10538
914-834-3100, ext. 629

The CFIDS Association of America is the world's largest organization dedicated to conquering chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome (CFIDS). For free additional information on CFIDS, please refer potential inquirers to the Association's
toll free line, 800-442-3437 (800-44-CFIDS).

SOURCE Mary Ann Liebert, Inc.
CO: Mary Ann Liebert, Inc.
ST: New York
IN: MTC
SU: PDT
07/29/97 17:04 EDT http://www.prnewswire.com

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