Hot Topics & Readers' Notes - 02-15-12

Chronic Fatigue Syndrome Follows 5% of Giardia Infections

Re: "Chronic Fatigue Syndrome after Giardia Enteritis: Clinical Characteristics, Disability and Long-Term Sickness Absence."

Giardiasis is an intestinal infection resulting from infestation with Giardia - a parasite commonly found worldwide in feces contaminated water, food or hands. Infection may not be noted and usually lasts a few weeks, but in some individuals may enter a prolonged phase.

As reported in this study, one to three years after contamination of a large Norwegian community water supply,  5% of those who'd tested positive for giardiasis presented with long-lasting symptoms consistent with a diagnosis of ME/CFS. The authors note that this is more than 8 times the normal ME/CFS rates of 0.23% to 0.56% in different populations.

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Transcranial Magnetic Stimulation Use Expands, Helps Many with Depression

Re: "TMS - Increasingly Available and often Effective for Depression" 

TMS is a noninvasive treatment option FDA approved for the two-thirds of all depression patients who experience only partial or no relief from at least one antidepressant drug. This article reviews personal anecdotes and trial evidence supporting the benefits of TMS for many people with acute depression, and studies involving Fibromyalgia pain, OCD, PTSD, and depression in pregnancy.

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 Pill Abuse 'War' Hurts Many Innocent Pain Patients

Re: "Has war on pill abuse turned into war on pain patients?"

"Betty Fraley is one of thousands of elderly South Floridians who suffer from chronic pain. For the last five years, she has taken Vicodin, a prescription narcotic, to help with arthritis in her hips, shoulders, elbows and neck."It never stops the pain, but it lets me live and work," said Fraley, 76, a waitress from Dania Beach. In recent months, Fraley said two doctors - her primary-care physician and arthritis specialist - told her they would no longer write Vicodin prescriptions." Read more.

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New ME/CFS Clinical Trial in San Francisco Bay Area

ME/CFS researcher Rich Van Konynenburg posted the following in ProHealth's ME/CFS message board:

I want to tell you about a new treatment study for chronic fatigue syndrome that is available to patients in the San Francisco Bay Area, or to those able to travel to this area. It was announced February 9. The study is being conducted by Dr. Jon D. Kaiser, M.D., who practices in Mill Valley, CA, and who is the CEO and Medical Director of K-PAX Pharmaceuticals, Inc. Dr. Kaiser has extensive past experience in the treatment of HIV/AIDS, and is currently specializing in chronic fatigue syndrome.

In order to participate in this study, patients will need to be able to visit Dr. Kaiser’s office once. His office is located 30 minutes north of San Francisco. In the office visit, a patient will be screened to determine whether she/he satisfies the criteria for the diagnosis of chronic fatigue syndrome. Conditions that may exclude a person from this trial are significant fibromyalgia, a history of heart disease, uncontrolled high blood pressure, major depression, or ulcer disease.

The treatment will last for one month. It will consist of “a low dosage of a currently available medication with a potent nutrient-antioxidant cocktail that boosts immune function to provide CFS patients with a healthy and balanced increase in their energy level.” According to Dr. Kaiser, the rationale for this combination is “By pharmacologically boosting central nervous system signaling from the brain, plus concurrently enhancing mitochondrial energy production with potent micronutrients, it is possible to initiate a reintegration of the neuro-endocrine-immune axis, providing CFS patients with an improved quality of life and the potential for complete cure.”

The office visit and the nutritional supplement for the study will be provided free of charge. This will be an open-label clinical study with no placebo group, so everyone who is selected to participate will receive the actual treatment. Dr. Kaiser reports that this treatment “has already shown promise in a significant number of CFS patients.” There will be an opportunity to continue this treatment beyond one month if a patient experiences benefit and desires to continue.

(I am not financially associated with Dr. Kaiser or with K-PAX Pharmaceuticals, Inc.) For more information or to enroll in the trial, please email Anne Lahaderne at a.lahaderne@mac.com or call her at (415) 381-7655.  -  Rich VanK

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Chronic Pain's Relationship Toll

"Although we can't control how other people act or react in response to our chronic pain problems, there are positive steps we can take to improve our relationships [and] today I'm focusing on our relationships with friends," writes HealthCentral ME/CFS & FM patient expert Karen Lee Richards. She shares thoughts on loss, toxic friends, and retaining the 'keepers' in "Six Tips for Improving Relationships with Chronic Pain."

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Genetically Engineered Food Labeling Petition

The Center for Food Safety recently filed a formal legal petition with FDA demanding that the agency require the labeling of Genetically Engineered foods. Now we are spearheading a drive with over 460 other organizations in the Just Label It! Campaign, to direct one million comments to the FDA in support of our petition.  We're more than halfway to our goal of one million comments, but we need your help to reach it! [To learn more and send your comment to the FDA in support of the petition, click here.]

- Center for Food Safety (http://geFoodLabels.org)

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Survey for Those on a Gluten Free Diet

NFCA (National Foundation for Celiac Awareness) is conducting an FDA-sponsored survey of people who are gluten-free to garner information about their experiences with Gluten in Medication. The survey takes 4 to 15 minutes to complete. It closes on February 28, 2012.  To participate in this survey please enter here: www.CeliacCentral.org/Survey/ 

NFCA urges all people who are following a gluten-free diet to participate. Participants will be asked about their experiences taking medicine. They will also be asked to share information if they think they might have had a gluten-related reaction to an over-the-counter or prescription medicine. More information about the study can be found at www.CeliacCentral.org.

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10% to 20% of Us Carry Latent Toxoplasmosis

Toxoplasmosis (the reason pregnant women are warned to stay away from cat feces) is a protozoan that after infecting us lies supposedly dormant in cysts in our brain, the way the chicken pox/herpes zoster virus that causes shingles lies dormant & ready to reactivate in our nerve cells. T. gondii can only reproduce in cats, but it can live and infect via feces contaminated litter boxes, water, and soil, where it infects grazing animals. (Which is why raw/rare meat loving people like the French have an infection rate of more than 50%.)

But can T. gondii affect our brains the way reactivated herpes zoster affects our nerves? Some scientists are now convinced it does, after noting that MRI scans showing gray matter loss in schizophrenia patients coincided almost exclusively with testing positive for T. Gondii - which they postulate may be responsible for a subset of that illness. See "How Your Cat Is Making You Crazy," by Kathleen McAuliffe.

Thanks to a post on MECFSForums for this link!

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Newcastle University Wins $1.26 Million Funding for ME/CFS Research

Newcastle University had two projects funded this week by the UK’s Medical Research Council, according to a report on the Northern CFS/ME Clinical Network (www.CFSMENorth.nhs.uk). Out of a total £1.6 million (about 1.26 million dollars) in grant money for which they applied, Newcastle researchers reportedly won about half of that amount for:

• A project focused on unraveling the underlying causes of autonomic dysfunction in ME/CFS, and how it relates to memory and concentration problems,

• And a second project to compare mechanisms leading to fatigue in ME/CFS and Primary Sjogrens Syndrome - focused on identifying an immunological bio-marker for fatigue in ME/CFS.

“More information will follow about when patient recruitment to these studies will begin,” so watch the (Northern CFS/ME Clinical Network site) for news.

Thanks to CFS Solutions of West Michigan Facebook site for this link!

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Trial to Determine Benefit of High-Dose Vitamin D for Multiple Sclerosis

A multi-center German trial will test the benefit of high-dose vitamin D for multiple sclerosis patients. Though there is much evidence linking low vitamin D status/low sun exposure to the risk of developing MS, a 'prospective' trial will help to clarify the relationship. That is, in this placebo-controlled trial, the effects on symptoms of high-dose vitamin D supplementation will be measured over a total period of 1-1/2 years. See "Efficacy of Vitamin D Supplementation in Multiple Sclerosis (EVIDIMS Trial): Study protocol for a randomized controlled trial."

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Study of Possible Intestinal/Oral Infection Role in RA Onset

This trial at NYU/Memorial Sloan Kettering for Rheumatoid Arthritis patients ("Does an Intestinal or Oral Infection Cause RA?") is apparently still recruiting. It involves antibiotic treatment, and assessment at baseline and during 5 months of treatment, of microbiota in the intestine and mouth, T-cell function & activation, RA biomarkers, and RA clinical activity. Duration of disease should be more than 6 weeks and less than 2 years. 

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Food Information Guide for Those with Urinary Tract Sensitivity

Most people affected by interstitial cystitis / painful bladder are aware that many foods and beverages can trigger pain, while other foods can be more bladder-friendly or downright soothing.

So a new iPhone/iPad "app" listing foods as "bladder friendly, try it, and caution" has been developed as a guide and educational tool for healthcare professionals and people with urinary tract sensitivity. It is based on surveys of patient food experiences, and the database can be used while shopping or ordering in a restaurant. To read about or purchase the 99 cent app, go to the Interstitial Cystitis Network site (www.IC-Network.com/apps).

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Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.