Hot Topics & Readers’ notes – 10-24-12

Telephone Memorial Service For Rich VanK, Sunday Nov 18

All are invited to a memorial service (by conference call) for Rich Van Konynenburg, who passed away last month leaving his many friends in the ME/CFS/FM, Lyme, and MCS community bereft. No RSVP needed, just ring in on Sunday Nov 18 at 2 pm Eastern (11 am Pacific, 7 pm London/GMT, etc.). All will be able to ‘raise their hands’ to share a memory or personal story, read an excerpt from a post Rich sent you, etc. We will be joined by Rich’s wife, Diana, his long-time colleagues Drs. Neil Nathan and Derek Enlander, and many other loving friends. To get the (easy) details on joining this call or ask questions, see the email Rivka sent out HERE.


Harvard Trial Strongly Supports Health Benefits of a Plain Ol’ Multi

According to a new report from Harvard cancer researchers in the Journal of the American Medical Association, an 11-year trial that included 15,000 middle aged male physicians – 7,500 taking a real multi-vitamin/mineral every day and 7,500 taking a fake tablet – found that the supplemented half developed 8% fewer cancers than the controls. Even among 1,312 doctors who entered the trial with a history of cancer, the difference was about the same. As the researchers suggest: “Although the main reason to take multivitamins is to prevent nutritional deficiency, these data provide support for the potential use of multivitamin supplements in the prevention of cancer in middle aded and older men.”


Ryan Prior’s ‘Real Story of CFS’ for USA Today

In “Opinion: The real story of Chronic fatigue syndrome” young ME/CFS patient Ryan Prior explains how at last finding a doctor who understood ME/CFS and did not say there was nothing to be done “is the reason I’ll walk across the stage this December to receive my degrees.” Even if XMRV had been connected to CFS, he reasons, he still would need a multi-faceted health support regimen for his many physical problems – unless and until a way to undo the effects could be found.


Saffron and Prozac About Equal in Depression/PMS Relief

A recent trial reports that saffron (tiny golden stamens of the crocus flower used in baking and cooking) performed as well as the antidepressant Prozac in supporting alleviation of clinical depression, PMS, and menstrual pain. Dr. Michael Greger’s Nutrition video “Wake up and Smell the Saffron” provides a good summary of this research. “Even the scent of this spice may reduce stress hormone levels and ease the psychological symptoms of PMS,” he reports.


Dr. Leonard Jason et al. Provide Update on Pediatric ME/CFS

Pediatricians, and parents with a child with ME/CFS, will want to read this update from the ME/CFS research group at DePaul University. Dr. Jason has for years studied and compared the utility of various ME/CFS diagnostic and treatment guidelines. He and his team provide some updates on the understanding of pediatric ME/CFS based on recent research. You’ll find the free full text article HERE.


XMRV Global Action Closes with an Inspiration

Long after it seemed XMRV would not be a ‘player’ the six smart folks whose daily coverage we relied on for the latest neuro-immune research & events have closed their XMRV Global Action Facebook site. Here is the link to their farewell message – Our Favorite Drug (Hope) – which includes a summary of the hopeful advances they’ve seen in the field since 2009, and a list of resources. Our hope is for their return under a new name.


Not One But Two Free Online ME/CFS Guides for MDs

In case you may have mistaken one of these free online guides for the other, the IACFS/ME offers a new 42-page 2012 ME/CFS Primer for Clinical Practitioners – and a 26-member International Consensus Panel has published the free online Myalgic Encephalomyelitis Adult & Paediatric International Consensus Primer for Medical Practitioners. 


Navigating an Unpredictable Illness with School Personnel

Sue Jackson, host of the Learning to Live With CFS site (, has posted some helpful advice on how a person with ME/CFS or his/her parent can deal with school or college personnel to navigate the problems of having an unpredictable illness. See “Talking to School Personnel About CFS.”


Hemispherx-FDA Ampligen Meeting Set for December 20

Hemispherx Biopharma will meet with the FDA on December 20 to discuss the company’s new drug application for Ampligen as a drug for the treatment of patients with chronic fatigue syndrome. The meeting is open to the public, the meeting will iclude oral presentations from the public, and the FDA will make background material publicly available before the meeting. Full details in the Notice of Meeting HERE.


Talking With Your Employer about Interstitial Cystitis / IBS

People with IBS, Interstitial Cystitis (bladder-related symptoms), and other chronic, unpredictable symptoms can appreciate these insights as to why & how to approach your employer about special considerations or accommodations. This article, featured on the Intersitital Cystitis Association website, notes that “telling your employer” and having some suggestions is one of the most important things you can do to maximize job productivity and security.


American Family Physician Article on ME/CFS Off Base

An article published Oct 15 by American Family Physician, the journal of the American Association of Family Physicians (“Chronic Fatigue Syndrome: Diagnosis and Treatment”) comes in for some stiff criticism from ME/CFS patients and advocates. For example, it does not mention post-exertion malaise, and emphasizes graded exercise and cognitive behavioral therapy, according to a horrified review (This. Is. Why.”“) posted Oct 17 by Occupy CFS blogger Jennie Spotila.


Aren’t Sleep Problems an Integral Part of ME/CFS?

Filed under need more information. A new sleep study by Belgian researchers (“Sleep in the Chronic Fatigue Syndrome”) suggests that sleep impairment should probably not be considered a diagnostic criterion for ME/CFS in an exclusionary diagnosis: Sleep problems may be just co-morbid conditions. Why? “There is currently insufficient evidence that treatment of primary sleep disorders sufficiently improves the fatigue associated with CFS.”


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

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