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From Our Readers - Comments & Suggestions 12-01-10

  [ 9 votes ]   [ Discuss This Article ]
www.ProHealth.com • December 1, 2010


Dr. Pall on Vitamin D, ME/CFS & Other ‘Unexplained’ Illnesses

Re: “Will vitamin D supplementation ameliorate diseases characterized by chronic inflammation and fatigue?”

This paper, published Oct 25 by Anadore Hoeck, MD, and noted biochemist/recovered ME/CFS patient Martin L Pall, PhD, lays out evidence suggesting “a connection between lowered vitamin D metabolism and persistent NF-kappaB activation”… [and that this activation]… "has been supposed as a key event in Chronic Fatigue Syndrome and many other better-defined pro-inflammatory diseases.”

When ProHealth queried Dr. Pall about this research, he agreed to host a Q&A in our ME/CFS & Fibromyalgia Message Board early in 2011, and  responded:

“The vitamin D paper is basically Dr. Anadore Hoeck’s paper (she is a physician in Cologne, Germany). She was having trouble getting it published so I spend some time rewriting parts of it and after that she wanted me to be coauthor of the paper, which I was happy to do. So she deserves most of the credit for it…. I do think that this is an important paper, where adequate vitamin D pools lin the tissues may be necessary to avoid the chronic inflammatory and chronic oxidative stress response that is center to NO/ONOO- cycle diseases – and where most of us have sub-optimal pools because of our spending so much time indoors, wearing clothese and using sun block when we may be exposed to the sun.

“Vitamin D is not the only thing that may help us avoid NO/ONOO- cycle diseases, and I intend at some point to write a paper listing at least 10 other things where we differ from people in the Paleolithic era and where each of the differences may be expected to predispose us to greater susceptibility to NO/ONOO- diseases.”
- Martin L (Marty) Pall

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Could Cortisol 'Microdoses' Help Fibro and Rheumatoid Arthritis?

Here's an article published on a North Dakota website ["Arthritis sufferers find relief in cortisol microdoses."] The article centers around taking prednisone (synthetic cortisol) and mentions a clinic in Fargo opened by "retired North Dakota professor Virgil Stenberg." He "teaches patients to take microdoses of the hormone cortisol only when the body needs it" (signs of a flare-up) and claims this doesn't produce the bad side effects we know result from high dose use. I Googled and found a set of videos on this treatment at http://videowap.tv/Virgil+Stenberg/. Has anybody tried this? - C

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Lupus Research Registry Connects People to Local Studies

People with lupus can now sign up to be notified of local clinical studies enrolling volunteers through the Lupus Foundation of America's (LFA) Center for Clinical Trials Education (CCTE). The LFA's Lupus Research Registry, through the CCTE, uses information provided by the registrants to help connect them to local clinical studies. The Lupus Research Registry is part of the LFA's ongoing efforts to advance the medicine and science of lupus and further the discovery of safe, effective, and more tolerable treatments for lupus. [To register or learn more about lupus and current research, go to www.lupus.org/clinicaltrials/registry.htm.]
– Lupus Foundation of America

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Half-Page ME/CFS & XMRV Ad to Run in Washington Post

Re: "The Vote on Washington Post ME/CFS Awareness Ad Options"

The MCWPA Ad Article - Thank you so much, ProHealth! I am very pleased you understand the importance of this effort by the volunteers at ME/CFS Worldwide Patient Alliance (http://mcwpa.org). The ads are outstanding and are going to make a difference for us all... The effort is not stopping at one ad; we will persist until The Band STOPS Playing. We have our demands/goals listed on the mcwpa.org website. The right hand column of the home page also lists a Press Room, where scientific articles and Hillary Johnson's "WHY" blog are listed. If patients continue to support this, we will continue; the monies collected in just over 3 short months will go for the first ad and the press releases to the US, UK, Canada and Brussels (EU). Thank you again, PH...I knew we could count on you! - S

I'm glad to see this posted here. It's amazing how we all seem to be on the same page at the same time. We're mad as hell and we're not going take it anymore. If we can't march in the streets, we're going to stir things up by buying ads in the Washington Post... - C

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Questions About Lyme Disease Information vs Misinformation

The American Lyme Disease Foundation website has a ‘misinformation about Lyme Disease’ Q& that discusses the latest on some things I've been wondering about - like the possibility of Lyme causing birth defects and whether mosquitos or horse flies might transmit Lyme. – T

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Blood Products Advisory Committee to Discuss XMRV Dec 14

From 1 pm to 3:30 pm Tuesday, Dec 14 in Washington, the committee will discuss "MLV-related Human Retroviruses and Blood Safety." There will be nine research/study presentations and reports. This will be followed by open public hearing and Q&A. You can read the schedule here. - N

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#mecfs Daily Twitter News - Check It Out for the Latest

This daily Twitter news site, at http://paper.li/tag/mecfs is published every day. It is a newspaper built from all the articles, blog posts, videos, and photos shared on Twitter using the hashtag: #mecfs - and headlines a few of the most interesting items. You can ask them to alert you by email when the paper is updated for the day. - S

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Hunt for XMRV-ME/CFS Link Makes the New York Times

On Nov 23, the NY Times featured an article on Dr. Ian Lipkin, "A Man from Whom Virus Can't Hide." There's a lot of background on virus research, and the article ends by describing how Dr. Lipkin is leading the NIAID [National Institute of Allergy and Infectious Diseases] project hoping to clear up the XMRV & CFS question. So the big-time media are watching. - M

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Household Cleaning Product Revolution Kicks Off in CA

Kitchen cleaners, glass sprays and other household cleaning products will be reformulated to reduce smog-forming compounds under a new regulation adopted Thursday Nov 18 in California. It's the equivalent of removing half a million cars from California roads [7 tons of volatile organic compound emissions a day] and will cost manufacturers about $50 million. The new, cleaner products, numbering about 2,000, are likely to be offered nationally. Read about it here.
- Environmental Health News, Nov 19

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Watch the First "ME/CFS Champions" Video Ad

A major new international initiative to generate public awareness of ME/CFS and support for the ME/CFS Pocket Money Research Fund (http://www.pocketmoneyfund.org) has been launched by the ME-CFSKnowledgeCenter. The initiative is entitled “ME/CFS Champions' Campaign.”

Olympic Gold Medalist Laura Kraut of the United States Equestrian Team is the first champion to be featured in a video and print advertising campaign to increase public awareness of ME/CFS and to generate a new revenue stream for the research fund. … You may see the video as well as a sample of the print advertising at www.cfsknowledgecenter.com/champions.php - D

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Dr. Cheney's XMRV Retest Finds More Positives

I can’t afford to subscribe to Dr. Paul Cheney’s research newsletters, but this teaser introduction to his November 28 newsletter [www.cheneyresearch.com/2010/11/detection-of-xmrv-in-well-described-and-consecutive-cfs-cases] seems to say that 8 out of 12 of his “well described” CFS patients who had tested negative for XMRV according to an earlier PCR/culture test are positive by a retest using a VIP Dx serology test. - Y 

_________________________________

Statin Drugs & XMRV Reactivation?

I saw this string on the MECFSforums.com message board ("Immunosuppression caused by statins, reactivation of XMRV") - on a study published in 2004 that seems to indicate the statin drug fluvastatin (to reduce cholesterol) could suppress immunity. They suggest this could allow "reactivation" of XMRV. - J

___

Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not intended to prevent, diagnose, treat or cure any condition, illness, 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.




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