Home | Newsletter | Pamphlet | News and Events | Patient Resources |
 | Bedroom Talk | Books and Videos | Letters | Articles of Interest | Links |



Research Study on the mind-body-spirit connection and chronic illness.


Canada Leads the world with a Clinical Working Case Definition, Diagnostic and Treatment Protocols for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — scroll down to "IMPORTANT ME/CFS WORKING CASE DEFINITION NEWS RELEASE!!!" on the home page.

Fibromyalgia: Current Treatments, Drugs in Development from Griffin Securities, Inc. Fibromyalgia (FMS) Industry Review

New Developments in the Management of Fibromyalgia Syndrome — I. Jon Russell, M.D., Ph.D., writes, "Fibromyalgia (FMS) is a common syndrome of widespread soft tissue pain that is substantially underserved by the medical profession and the pharmaceutical industry. This field of inquiry and the patients with FMS would be better served by an improved understanding of the biologic and physiologic processes responsible for the symptoms of FMS."

The CFIDS Assn. of America's health care provider education curriculum is now available online.  This project, in tandem with other efforts to educate the health care community about CFIDS, will enable more medical professionals to provide a higher level of care to their CFIDS patients and will raise awareness within the medical community about this challenging public health concern.

Fibromyalgia Pain Is Real — People with fibromyalgia (FM) know their pain is real. So do FM experts. And now there's proof that FM patients' extreme sensitivity to pain is no figment of their imaginations.

The National Vaccine Injury Compensation Program Improvement Act of 2002 (H.R. 3741), which would address some of the serious problems in the Program.

Class Action Suit on behalf of all individuals in the Province of British Columbia who were prescribed and took the drug Paxil which at all material times hereto has been and continues to be  manufactured, marketed and distributed by GSK, and who experienced dependency/withdrawal reactions.

FDA Seeks Comments on IBS Drug — Lotronex Was Withdrawn From the Market In 2000, but Some Want It Back.  In response to repeated requests from people with irritable bowel syndrome (IBS), the FDA is now re-examining the status of the controversial drug Lotronex.  The FDA approved Lotronex in February 2000 to treat specific types of the intestinal illness, but it was withdrawn from the market nine months later after several life-threatening reactions and at least five deaths occurred in people given the drug.  Read our Editor's response.

Fibromyalgia Patient Registry in conjunction with the Georgetown University Chronic Pain and Fatigue Research Center.

Volunteers Needed to take part in Master's Degree research on M.E., CFS and PVFS.  The investigation is to determine how people suffering from these illnesses cope with psychological issues that arise from having these illnesses, not to pinpoint psychological causes.

Immunotherapy Treatment Shows Dramatic Results for Rare Neurological Disorder  An immunologic therapy administered to patients suffering from stiff person syndrome (SPS), provides dramatic relief from disabling symptoms.  Success of the treatment supports the theory that SPS is the result of an autoimmune response gone awry in the brain and spinal cord.

Celiac Disease-like Abnormalities in a Subgroup of Patients With Irritable Bowel Syndrome
Can a diagnosis of latent or potential celiac disease (CD) be missed among patients thought to have irritable bowel syndrome (IBS)? IBS is defined as a disorder characterized by a variable combination of chronic or recurrent gastrointestinal symptoms in the absence of other demonstrable disease. However, the physician must be alert to the possibility of other disorders that may effectively mimic or even exacerbate IBS, such as CD.

Clinical phase of double blind T3 study completed by The Fibromyalgia and Chronic Myofascial Pain Institute.  An initial paper on the presence of geloid masses in patients with FMS and CMP was submitted for publication 5/23/00.  The geloid masses are, we believe, a previously undocumented phenomenon which can add considerably to the pain level, as well as contribute to the resistance to standard therapies.

U.K. Report of the CFS/ME Working Group to the Chief Medical Officer  Also read concerns about the report by Professor M. Hooper, Emeritus Professor of Medicinal Chemistry, University of Sunderland, UK.

Gulf War Syndrome Can Cause Severe Chronic Impairment  US veterans with the most severe form of Gulf War syndrome (GWS) are seriously impaired, even though many are receiving little or no service-connected disability compensation, according to Dr. Robert W. Haley and colleagues, of the University of Texas Southwestern Medical Center in Dallas.

Re-using Water Bottles: An Action News Special Report  If you've ever re-used a water bottle for the sake of convenience, you're not alone. But an Action News test has found that bottle may contain some things you don't want to drink.

Baclofen Cuts Gastroesophageal Reflux  The GABA receptor type b agonist baclofen produces a significant reduction in episodes of gastroesophageal reflux in patients with gastroesophageal reflux disease, Australia and Swedish researchers report in the January issue of Gut.

Stress Causes Lasting Brain Changes  Study Findings Help Explain Posttraumatic Stress Disorder.  We all know what it's like to be under stress. And we know it can take a toll on our health – from headaches to insomnia to serious illness. Even "good" stress – the birth of a child, a promotion at work – can cause problems if we don't learn to manage it effectively. Now there's evidence that even short-term stress can cause lasting physical changes in the brain – findings that help explain the devastating symptoms of posttraumatic stress disorder.

Autoimmunity in a New Vein?  When renowned pathologist Luther E. Lindner found "strange organisms" in human blood and tissue, he was intrigued. Now Lindner along with a Texas-based company called Pathobiotek say a newly discovered, blood-based bacterium may be the long-sought trigger for multiple sclerosis, chronic fatigue syndrome, and other forms of autoimmune disease.

Chronic Fatigue Syndrome More Than Being Tired  Imagine getting only three or four hours of sleep a night for eight years. Then having a pain as severe as a toothache throughout the entire body at the same time. Add to that the feeling that memory is fading. That's what life can be like for people who suffer from chronic fatigue syndrome (CFS), says Dr. Jacob Teitelbaum, an internist who specializes in treating this mysterious illness.

HHS Appoints 27 to Advisory Committee on Regulatory Reform  HHS Secretary Tommy G. Thompson today announced the appointment of 27 people to serve on the Secretary's Advisory Committee on Regulatory Reform. The new panel, which includes consumers, doctors and other health care professionals, will help guide HHS' efforts to streamline unnecessarily burdensome, inefficient regulations that interfere with the quality of health care for Americans.

Finding a Doctor Who Understands Complementary And Alternative Medicine  The use of complementary and alternative therapies has skyrocketed.  Magazines, TV, bookstores and the Internet are now filled with information about herbal remedies, vitamins, dietary supplements, massage, relaxation techniques and more. One result: More and more people want medical care from a doctor who understands complementary and alternative medicine.  You may seek out such a doctor for a number of reasons.  Whatever your goals, you will benefit most from a doctor who neither condemns complementary and alternative medicine wholesale, nor blindly advocates it.

Prevalence of Insomnia Symptoms in Patients With Sleep-Disordered Breathing  Objective: To assess the prevalence of insomnia symptoms in patients with objectively diagnosed sleep-disordered breathing (SDB).  [Note: Medscape requires free registration in order to read its articles.]

Pain, The Disease  A modern chronicler of hell might look to the lives of chronic-pain patients for inspiration. Theirs is a special suffering, a separate chamber, the dimensions of which materialize at the New England Medical Center pain clinic in downtown Boston. Inside the cement tower, all sights and sounds of the neighborhood -- the swans in the Public Garden, the lanterns of Chinatown -- disappear, collapsing into a small examining room in which there are only three things: the doctor, the patient and pain. Of these, as the endless daily parade of desperation and diagnoses makes evident, it is pain whose presence predominates.  [Note: The New York Times requires free registration in order to read this article.]


Doctors Told They Must Take ME Seriously  Doctors must recognise chronic fatigue syndrome as a serious illness that can be "debilitating and distressing", says a report commissioned by the Government.  The ailment, also known as myalgic encephalomyelitis (ME), was "a genuine condition" that could cause "profound, often prolonged, illness and disability". Charities welcomed the report, saying it was a "wake-up" call for doctors and other health professionals who had dismissed the illness affecting thousands of Britons as "yuppie flu" or "all in the mind".  The study by a working party, based on consultation with patients, carers and support groups and published yesterday, said it was "not excusable" for doctors to deny patients advice or treatment because they did not know enough about the illness.

General Practitioners Underestimate Intensity of Patients' Severe Pain  Primary care physicians tend to rate their patients' pain intensity significantly lower than do the patients themselves, especially when the pain is chronic or severe, Finnish investigators report.  [Note: Medscape requires free registration in order to read its articles.]

The Office of Research on Women's Health (ORWH) and cosponsoring Institutes and Offices (IC) of the National Institutes of Health (NIH) invite submission of investigator-initiated research grant applications to support research on the pathophysiology and treatment of chronic fatigue syndrome (CFS) in diverse groups and across the life span.  Applications that address novel hypotheses, heterogeneous population groups, research gaps and common mediators influencing the actions among and between various bodily systems are encouraged. The NIH is interested in funding research that will improve the diagnosis,  treatment and quality of life of all persons with this disease.

National Survey on Use and Knowledge of Dietary Supplements  The Dietary Supplement Education Alliance (DSEA) commissioned the first comprehensive national survey on the use of dietary supplements, called the Dietary Supplement Barometer survey. A nationwide poll of 1,027 Americans aged 18 and older was conducted by Harris Interactive from June 28 through July 1, 2001 to track consumers' attitudes and beliefs about vitamins, minerals, herbs and specialty supplements.  The survey found that the majority of respondents believe in supplements and take them on a regular basis. However, according to the survey many consumers could use more information about the benefits and responsible usage of these products.

Herbal remedy linked to liver disease, Kava bans multiply  A popular herbal relaxant available off the shelf in Canada was banned in France yesterday as reports tied it to severe liver damage.  German and Swiss health authorities reported that, in addition to at least 30 cases of hepatitis, one person has died and four others required liver transplants after regularly taking kava, an herb that grows in the South Pacific and is available in Canada as a tea and a tablet.

Re-using Water Bottles: An Action News Special Report  If you've ever re-used a water bottle for the sake of convenience, you're not alone. But an Action News test has found that bottle may contain some things you don't want to drink.

"No, you STILL don't want the anthrax vaccine. Here's why."  Oct. 7, 2001: The Anthrax Vaccine Network, Inc., was originally formed as a grass-roots networking and political organization to halt the military’s mandatory Anthrax Vaccine Immunization Program. Although America is now at war against terrorist groups, and although, as of this writing, two people in Florida have come down with anthrax, our position has not changed. Here’s why.

Hh Government Study Finds Link Between Lou Gehrig's Disease and Gulf War Service  Soldiers who served in the Gulf War were nearly twice as likely to develop Lou Gehrig's disease than other military personnel, the government reported Monday, the first time it has acknowledged a link between service in the Gulf and a specific disease.  The Veterans Administration said it would immediately offer disability and survivor benefits to veterans who served in the Persian Gulf during the conflict a decade ago.

New Report Details Those At Greatest Risk From Antibiotic Resistance: Seniors, Children, Medically Vulnerable Hardest Hit By Untreatable Infections  A new report, "When Wonder Drugs Don't Work: How Antibiotic Resistance Threatens Children, Seniors, and the Medically Vulnerable," released today by Environmental Defense, highlights the significant health risk posed by antibiotic resistant bacteria to seniors, children, and individuals with certain medical conditions.

E.P.A. Reconsiders Human Tests of Pesticides  The Bush administration is backing off its earlier inclination to consider the results of experimental tests on people in regulatory decisions on toxic pesticides.  The Environmental Protection Agency turned today to the National Academy of Sciences for a recommendation on "whether to accept, consider or rely on research involving deliberate exposure of human subjects to toxicants." It asked for an evaluation of the ethical and scientific issues.

FDA Tells Bristol-Myers to Add Black Box Serzone Warning  The US Food and Drug Administration has told drugmaker Bristol-Myers Squibb Co. that it must include a so-called black-box warning on its label for the antidepressant Serzone (nefazodone) informing patients that rare but perhaps life-threatening liver damage can occur when using the drug, The Wall Street Journal said on Friday.

Mystery Malaise: New treatments show promise, but CFS continues to stump investigators.  But now, after decades of confusing studies and frantic patients, a CFS treatment approach developed by a private researcher, Dr. Jacob Teitelbaum, is encouraging both patients and doctors who are adopting his strategies.

Predicting Who Will Get Chronic Fatigue
Unraveling the mystery behind chronic fatigue syndrome continues to come in baby steps. The latest study shows that a blood test and physical fitness may predict who goes on to develop this puzzling problem.  [Editor comment:  Once again the term "Chronic Fatigue" is used synonymously with "Chronic Fatigue Syndrome", which helps keep the waters very muddy.]

U.S. Will Use Once-Banned Human Tests
Pesticides: EPA says it will accept industry data gathered by giving paid subjects chemical doses.

Three years ago, in response to mounting criticism from environmentalists and physicians, the Clinton administration stopped using information from industry studies conducted on humans to determine the amount of pesticides that could be applied to fruits, vegetables and other crops.  Now the Bush administration, siding with manufacturers on whether such studies are ethical and scientifically valid, has told the pesticide industry it will use data from such tests, in which paid volunteers swallow small doses of the products.

Diabetes Vaccine Has Encouraging Results in Mice
Mice injected with specially treated spleen cells will develop symptoms similar to those seen in type 1 diabetes. But giving these mice a modified version of these cells beforehand will prevent these symptoms from arising, Argentine scientists report in the November issue of Experimental Biology and Medicine.  The findings suggest, they say, that a similar approach could be used to develop a vaccine for type 1 diabetes in humans who are at risk of developing the disease.

Living with FMS/CFS
The prominent CFS researcher Dr. L. Jason has, since 1999, addressed a major problem in current understanding of CFS,  its complex and fluctuatious nature.  In a 2001 paper, his DePaul research team concluded that when planning treatment for CFS, self-report of symptoms is superior to other validation systems.

New Survey Reveals Chronic Fatigue Syndrome Is as Disabling or Debilitating as Lupus, Multiple Sclerosis and Rheumatoid Arthritis
Lack of Test to Detect the Illness Remains Greatest Barrier to Diagnosis
CHARLOTTE, NC, November 13, 2001 - Thirteen years after a group of scientists coined the term chronic fatigue syndrome (CFS) to describe a mysterious medical condition, many medical professionals are acknowledging it as a seriously disabling condition in need of treatment, concluded a survey released today by The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America.

Abnormal Pain Memory Helps to Explain Fibromyalgia
The symptoms of fibromyalgia may be the result of a central nervous system that "remembers" pain sensations for an abnormally long time, according to research presented at the American College of Rheumatology Annual Scientific Meeting on October 29 – November 2, 2001, in Philadelphia, Pennsylvania.

Evidence Report/Technology Assessment: Number 42
Defining and Managing Chronic Fatigue Syndrome

Under its Evidence-based Practice Program, the Agency for Healthcare Research and Quality (AHRQ) is developing scientific information for other agencies and organizations on which to base clinical guidelines, performance measures, and other quality improvement tools. Contractor institutions review all relevant scientific literature on assigned clinical care topics and produce evidence reports and technology assessments, conduct research on methodologies and the effectiveness of their implementation, and participate in technical assistance activities.

A Comparison of the 1988 and 1994 Diagnostic Criteria for Chronic Fatigue Syndrome
Source: Journal of Clinical Psychology in Medical Settings Vol. 8, No. 4, pp 337-343 Date: December 2001
Leonard A. Jason,(1,2) Susan R. Torres-Harding,(1) Renee R. Taylor,(1) and Adam W. Carrico(1)

The current investigation examined the differences between 1988 and 1994 definitions as well as participants who had a psychiatric explanation for their fatigue. Dependent measures included psychiatric comorbidity, symptom frequency, and functional impairment. The 1988 criteria, compared to the 1994 criteria, appeared to select a group of participants with more symptomatology and functional impairment, but these groups did not significantly differ in psychiatric comorbidity. Implications of these findings are discussed.


Home | Newsletter | Pamphlet | News and Events | Patient Resources |
Bedroom Talk | Books and Videos | Letters | Articles of Interest | Links |

© Copyright 1999-2002.  The Chronic Syndrome Support Association, Inc.
All Rights Reserved.  Health Information Disclaimer

Most recent revision Tuesday, December 31, 2002