Hot Topics & Readers’ Notes – 08-15-12

The Ketotifen Trial for Fibro

Re: "Trial of Keotifen for Fibromyalgia Recruiting at Indiana University"

Ketotifen is an H1 antihistamine and “mast cell stabilizer.” Mast cells, found in mucous membranes and connective tissues, release histamine, which is involved in local inflammatory response and immune response to pathogens by making capillaries permeable to white blood cells. Research suggests, for example, that ketotifen may reduce ‘visceral hypersensitivity’ in people with IBS.

Cort Johnson also suggests the preliminary evidence that ketotifen might help FM could indicate it may help ME/CFS as well. See "Fibromyalgia Trial Shows Promise… For Chronic Fatigue Syndrome?"


FM & Hysterectomy – Often Related, But How?

A University of California, San Diego study published Aug 9 in Clinical Rheumatology found that almost half of a sample of an HMO’s fibro patients have had a hysterectomy. But more than 90% of the hysterectomy subset had only become diagnosed with FM after this surgery. With them folded in to the overall FM patient group, the researchers suggest that FM patients have a much higher hysterectomy rate than the general female population. Yet, for these cases, is hysterectomy part of the FM profile, or is FM often the result?


New Social Security Ruling on FM Disability Evaluation

According to HealthCentral Fibromyalgia Health Guide Karen Lee Richards, a new Social Security Administration ruling went into effect on July 25 which describes how they develop evidence that a person has “a medically determinable impairment (MDI) of fibromyalgia, and how they evaluate fibromyalgia in disability claims and continuing disability reviews.” To make it easy for people with fibro, Karen has pulled out some of the ruling’s key elements HERE.


Fluoride’s Neurotoxicity for Children: Harvard Study

According to a recent Harvard press release, "In a meta-analysis, researchers from Harvard School of Public Health (HSPH) and China Medical University in Shenyang for the first time combined 27 studies and found strong indications that fluoride may adversely affect cognitive development in children." Most of the studies were conducted in China, where the water naturally contains fluoride in many areas. The report, which has generated many headlines in the press, was published Jul 20 by Environmental Health Perspectives.


Commenting on Cytomegalovirus Findings

Re: "Researchers Discover How Cytomegalovirus Damages Immune System: Plan to Stop It"

Alternative immunity strategies – This suggests that people with EBV and CMV in their bodies, if they are having problems with reactivation or getting everything that goes around, may want to attack with alternative immune strategies during flu seasons or when around sick people. I would think, in particular, that beta glucans in high doses, which shifts and balances the immune system away from overactivity in antibody reactions and toward general activity (including antiviral) could add "reinforcements" to T-cell attack. Additionally thymic protein A can increase activity of existing T cells, especially as we age (middle age or older). Colloidal silver, coconut oil, colostrum, and antiviral or antifungal herbs might also help. The nose cell finding suggests that perhaps colloidal silver nose spray (already available and nontoxic) may help. – E


Does Migraine Hurt the Brain?

According to new research from Brigham and Women’s Hospital, migraine is not a risk factor for faster rates of neurocognitive decline. Their Women’s Health Study, which tracked 6,349 female migraine sufferers, was big enough to support the conclusion that migraine is not associated with cognitive decline/dementia.


FM & CFIDS Self-Help Course Deadline Sep 2

The CFIDS & Fibromyalgia Self-Help Course is currently accepting signups for the fall session. The course, which begins September 10, is a 7-week email discussion group that focuses on practical strategies for managing common problems of CFIDS and fibromyalgia. The cost of the course, which includes a copy of Managing Chronic Fatigue Syndrome and Fibromyalgia: A Seven-Part Plan, is $30. Visit our website to learn more and to register:
Bruce Campbell, Director


The Problem of the ‘Nocebo Effect’ in Clinical Trials

A recent NY Times article ("Beware the Nocebo Effect" ) highlights the potent if unpredictable healing power of the human mind, called the placebo effect in clinical trials – and its evil twin the nocebo effect. Both make it harder to get good therapeutic trial results.


Resources Especially for Men with Fibromyalgia

A great resource for the many men who have fibromyalgia is the Men With Fibromyalgia website ( This site offers uniquely male perspectives in forums, chat, news, personals, and more.


SF Bay Area Open Label Ampligen Study Approved

According to a Co-Cure Listserv post: "The San Francisco Bay Area area practice of physician (Dr. Raj Patel) has been IRB approved and has started baseline testing patients for the FDA open label Ampligen® treatment study protocol (AMP 511)." Persons interested in participating in the Ampligen treatment study at Dr. Patel’s office in Los Altos, CA, or who want to learn more about the study and its costs can read more here.


Boston Lyme Patient Wins Disability Claim

A Boston physician who became disabled with chronic Lyme disease won a disability claim recently, thanks at least partly, her attorney believes, to "a Lyme-literate administrative law judge, who understood the cognitive impairments that can occur when Lyme disease is undiagnosed/untreated for years." Read more here.


Cannibis/Opioid Pain Combo

A small pilot study at UC San Francisco, led by Donald Abrams, MD, found that when paired with morphine (13 people with a variety of pain conditions) or oxycodone (11 pain patients), inhalation of low-concentration vaporized cannabis "safely potentiates the analgesia" of the opioids. Potentiation means the opioid’s pain relieving effect is increased, potentially reducing the needed dose, though the researchers can only speculate as to the mechanism involved. The study is reported in Natural Medicine Journal.


Note: This information has not been evaluated by the FDA and is not meant either as advice or to prevent, diagnose, treat or cure any disease.

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