Hot Topics & Readers’ Notes – 03-14-12

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Study Seeks Celiac Patient Family Members

The National Foundation for Celiac Awareness (NFCA), in collaboration with Beth Israel Deaconess Medical Center in Boston, is conducting research on the perceptions of celiac disease among families where a member has been medically diagnosed. This research seeks to uncover the attitudes and beliefs of at-risk family members who have not been tested for the disease.

The study will have two phases: telephone focus groups and personal interviews, and an on-line survey. The telephone focus groups and personal interviews at phase one will impact and define the content of the on-line survey. This notice is for participation in phase 1, the telephone focus groups and personal interviews, which is now open.

To read more, click here.

Celiac Central ( ), Feb 28, 2012

Note: Beth Israel Deaconess is also studying the safety and effectiveness of an investigational medication for individuals with Celiac disease. See news about this and other celiac research at (


Why We Need the NIH to Help Solve the Chronic Lyme Mystery!

Laurie McClellan wrote this free access article in the March 2012 issue of HealthAffairs about her husband’s struggle to overcome chronic Lyme, which according to medical Authorities “does not officially exist” (“Chronic Lyme Disease: It’s Time to Solve the Medical Mystery Inside an Enigma”). 

In describing her husband’s nightmare fight to get treatment for chronic Lyme, Laurie makes a case for NIH research to really find out what’s going on. (There’s also an audio version of the article, though listening may require download of a Windows media player.)


Allergy UK’s Online Allergies Survey

With National Allergy Week taking place next month (23rd-29th April 2012) wants to raise awareness of the millions of sufferers out there. We want to find out what the top five allergies are in the UK – to demonstrate the severity of the conditions, and the breadth of suffering. Everyone is welcome to take part in the survey [HERE] and all responses are completely anonymous.

Allergy UK News, Mar 8 (

Note: See also the products & services that have won Allergy UK’s allergy friendly and chemically friendly seals of approval.


FM: Tight, Painful Chest Muscles & Shortness of Breath?
As Dr. Mark Pellegrino noted in a ProHealth Q&A, fibromyalgia patients often experience pain “from the muscles and soft tissues in the chest wall and rib area such as the pectoralis muscles and intercostal muscle. The ligaments and tendons around the chest area (sternum or breast plate) can also become painful.”

For further explanation of pain in this area and ideas for relieving it, see a free sample article provided by Fibromyalgia Network (“Reducing Tight, Painful Chest Muscles and Shortness of Breath.”)

See also: “Disordered Breathing in ME/CFS & Fibromyalgia – Symptoms and Recovery,” by Australian clinical nutritionist & fatigue consultant Blake Graham.


7th Annual Invest in ME Conference, June 1 in London

Invest in ME (IME) has posted the program for the June 1 International ME/CFS Conference. Among the experts scheduled to share clinical and research updates with attendees from many countries are: Dr. Sonya Marshall-Gradisnik (immunological biomarkers); Dr. Andreas Kogelnik (diagnosis and treatment); Dr. Daniel Peterson (Columbia !, II, and III research projects); Prof. James Baraniuk (to be determined); Prof. Hugh Perry (neuro-inflammation); Dr. Mario Delgado (neuropeptides); Prof Simon Carding (gut microbiota and the CNS); Dr Oystein Fluge & Prof Olav Mella (B-cell depletion therapy using Rituximab); and more.

See info on prices (discounts through Mar 16 only), and registration here (/ 


Lecture on ‘German Biological Medicine’ in Lyme Treatment

“ held a one day conference in January 2012 with Dr. Ann Corson and Dr. Christine Green,” writes Lyme patient Scott Forsgren. He offers a pdf of Dr. Corson’s slides, along with the notes he took, on his BetterHealthGuy blogsite – The title: “The Use of German Biological Medicine in the Treatment of Tick Borne Disease.” Dr. Corson reviews a daunting array of findings regarding the potential effects of chronic Lyme, and outlines how these aspects may be addressed by an integrative approach which she describes as an “integration of western basic science with traditional European herbal medicine, classical homeopathy, terrain based medicine, and bio-energetic medicine, all molded by the philosophies of ancient Chinese medicine.”

Dr. Corson’s practice in Chester County, PA, is devoted to treatment of Lyme & associated tick-bourne diseases.


Coconut Oil for the Mitochondria – “One of the Fats the Body Burns Best”

Health Central Diabetes patient expert David Mendosa is a relentless researcher when it comes to information on the most healthy foods for those with diabetes. Here is his enlightening report on coconut oil (“Coconut Oil: A Different Kind of Saturated Fat”). David found, for example, that “Most of the fatty acids in our diet are longer than 12 carbons, so they have to be cut down and processed” before the mitochondria can burn them – and that takes time and energy. But “many of the fatty acids in coconut oil are already in the short chain length and can therefore go right into the mitochondria to get burned.”


When ALS is Lyme – Book Explains the Theory

A free PDF of Lyme patient Sarah Vaughter and John Vaughter have written a 157-page book proposing that many people diagnosed with Amyotrophic Lateral Sclerosis (ALS) really have “late-stage neuroborreliosis” (Borrelia spirochete infection). A free PDF of their book (When ALS is Lyme) is offered here –

“If you have been told that the chance that your ALS is Lyme-related is very small,” they write in the preface, “then we hope that this book will persuade you to get tested for Lyme disease.” And if your routine Lyme test was negative, “the likelihood that you have been tested correctly is vanishingly small.” Unfortunately, they observe, “late-stage Neuroborreliosis is often incurable – but its ALS symptoms can be arrested and very slowly reversed.” Thanks to XMRV Global Action for this link!


Petition to Dump Outdated Lyme Guidelines

If you haven’t signed the petition to Remove Outdated IDSA Guidelines (for Lyme diagnosis & treatment) from the National Guidelines Clearinghouse, there is still time. At this writing more than 17,400 people have signed and the number continues to grow minute by minute. The petition is here: You will need to provide some info about yourself to ensure valid ‘signatures’ but you can choose to remain anonymous by checking a box.


Lactobaccilus Sourdough Starter Strains Helpful for Celiacs

Re: “Gluten-associated gastrointestinal inflammation? Gluten free sourdoughs may hasten healing”

Italian researchers found that sourdough breads employing lactobaccilus strains and made with rice, corn or amaranth flours could help heal intestinal inflammation & enhance the recovery of celiac patients in the early stages of a gluten free diet. In another Italian study published in 2011, researchers found that the concentration of gluten in wheat flour was reduced when it was ‘hydrolyzed’ with sourdough lactobacilli. 


Research that Will Establish Biomedical Basis of IBS

Re: “Neural and Neuro-immune mechanisms of visceral hypersensitivity in Irritable Bowel Syndrome”

Visceral pain specialists at the University of Pittsburgh Center for Pain Research have created a summary of evidence that irritable bowel syndrome is a biomedical disorder involving central sensitization, not a ‘functional’ – aka psychological – disorder. For the benefit of the research community they outline deficiencies remaining in this current knowledge, and areas requiring further investigation to better establish the mechanisms involved in IBS.


Anesthesia WARNING Wallet Card for ME/CFS & FM Patients

The New Jersey CFS Association offers a printable card you can carry in your wallet (at regarding precautions in case you should need anesthesia in an emergency. It is based on advice to doctors/patients who are about to be hospitalized or have surgery, developed by Dr. Charles Lapp and Dr. Paul Cheney at (Thanks to CFS Solutions of West Michigan Facebook for posting a link to this!)


How Vitamin D May Help the Body Clear Amyloid Plaques

Re: “Scientists pinpoint how vitamin D may help clear amyloid plaques found in Alzheimer’s” 

Researchers at UCLA think they’ve unraveled the role vitamin D plays in the body’s activation of key genes and cellular signaling networks that stimulate the immune system to clear amyloid-beta protein in the brain. Their next step will be a clinical trial to assess the impact of supplementation with active forms of vitamin D3 in Alzheimer’s patients.


Note: This information has not been evaluated 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 with your professional healthcare team.

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