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Hot Topics & Readers’ Notes – 09-12-12

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Columbia to Hold XMRV Press Conference Sep 18

The findings of a study of virus involvement in ME/CFS patient samples, led by Columbia University ‘virus hunter’ Ian Lipkin, MD, will be streamed live starting at 10:30 AM Eastern Time on Tuesday, September 18, according to Columbia’s Center for Infection and Immunity (CII). The live press conference will be found on the CII website ( See the full press release regarding the press conference at


Canadian Pain & Medication Use Statistics

According to a news release published by the Sacramento Bee (, a study titled “The Canadian Pain Management Report” reportedly found that 90% of Canadians had purchased pain treatments or medications in the past year alone. The study, based on a survey posted on the Angus Reid Forum and commissioned by a bio-medical research company focused on development of transdermally delivered pain medications, also reports that “though Canada may be a pain-ridden country, 74% of Canadians avoid taking pain pills due to concerns such as adverse side effects.”


Platelet Rich Plasma as Treatment for Body Pain

Re: Cutting-edge option for chronic pain

According to this news report, sports stars like Tiger Woods, Kobe Bryant and Alex Rodriguez, who might once have received cortisone injections, are receiving  a “revolutionary” treatment for joint and other body pains that the usual icing and anti-inflammatories haven’t helped. It’s called platelet-rich plasma – platelets taken from a small amount of their own blood and injected back into the painful area. And in fact its effect is the opposite of an anti-inflammatory: it heightens the body’s local inflammatory response in a way that speeds tissue building and healing, and requires the patient to avoid taking anti-inflammatory medications well before the treatment. Broader studies of the therapy that might encourage insurance coverage are suggested.


Parvovirus Linked to ME/CFS with Joint Pain

Re: “Different ME/CFS symptoms linked to activity of HHV-6/HHV-7 vs parvovirus B19: Clue to subsets?” 

This research found active HHV-6/HHV-7 and/or human parvovirus in 65% of ME/CFS patients. There was a definite relationship between parvo and cases with multi-joint pain. Post-exertion malaise.was associated with HHV-6/7 infection.


Book Bashes Psychological Explanations for Physical Illness

Apparently the first printing of this new book by Angela Kennedy nearly sold out in the first week. In Authors of Our Own Misfortune: The problems with psychogenic explanations for physical illnesses,
Angela explains the serious and very widespread harm the “it’s all in your head” diagnosis is doing every day, and demonstrates why “such explanations are almost always fatally flawed, both scientifically and logically” – subject to a mix of confusing concepts and “moralistic and ideological assumptions about people and their illnesses.


Could GcMAF Be the Beginning of Autism’s End?

Researchers are saying GcMAF is helping children with autism. The majority of (80%) patients have high levels of nagalase – a marker of viral activity. GcMAF activates the macrophage cells that gobble up viruses in the body. It also works 2.5 times faster in the presence of vitamin D, so healthy levels of D are beneficial. See “GcMAF – the beginning of the end of autism?”


“Homesick” MCS Documentary Needs Your Photo

Filmmaker Susan Abod is finishing up her documentary “Homesick,” about life with chemical sensitivity and the search for safe housing. She is looking for people around the world to share photos of themselves in safer housing – whether that is a room, a trailer, or tent – to be used in a collage at the end of the film. You can view an 8 minute video clip and read more about the project on the Homesick website:


Unexpected Source of Bacteria May Help Explain Rosacea

Skin mites are ubiquitous unseen co-inhabitants of our world, feasting on dead skin cells in the majority of humans, with a special liking for the facial hair follicles. Now Evidence is mounting that rosacia (which affects 3% of the population) might be the immune system’s reaction to bacteria they carry. If that possibility pans out, new treatments may be on the way. Read more here .


Coffee Helped Computer Workers with Chronic Shoulder/Neck Pain

A Norwegian study involving people with chronic shoulder and neck pain found that the subjects who had coffee before performing computer work for 90 minutes had “significantly lower pain increase” in their neck, shoulders, forearms and wrists than those who did not drink coffee. They consider several possible mechanisms by which coffee might slow/reduce the onset of muscle pain in this activity – and the potentially broader implications. (See “Coffee intake and development of pain during computer work.”)


What Fibro Feels Like – Video

This awareness & understanding-building video (“My Fibromyalgia Journey: What it Feels Like”) relates the sensations a fibromyalgia patient experiences to sensations others may have felt at some time – while explaining what FM involves (including often feeling like an outsider looking in at a normal life, and often feeling ‘invisible’).


Win Organizations Money in the Chase Giving Contest

The Chase Community Giving contest has a lot of money ($5 million) to give as grants to the 196 charities in their eligible nominated organizations list that get the most votes by September 18. If you are a registered Facebook member you can vote for two of the listed charities. (Chase customers get two more votes.) To get started go to the contest Facebook page
(, click “allow application” so that you can vote, and search for organizations either by typing key words in the search box (e.g., fibromyalgia or ME/CFS) or scrolling down to browse the alphabetical listing or listing by category.


Action for ME Launches Fundraising Drive

The British charity Action for ME has launched a major fundraising drive – the Time for Action Appeal – aimed at helping it “end the ignorance, injustice and neglect faced by the UK’s 250,000 people with M.E. once and for all.” The challenge, writes Chief Executive Sir Peter Spencer, is that “demand for our services still greatly outweighs our capacity to deliver.” Read more about the appeal and about Action for ME’s services on behalf of ME patients here.


The New PANDORA – at Home in Michigan

CFS Solutions of West Michigan has brought the formerly Florida-based NeuroEndocrineImmune patient advocacy organization, PANDORA, on board in Michigan and has adopted the PANDORA name and its broader disease focus. Read about the new organization’s melded leadership (with Lori Chapo-Kroger at the helm), websites, and plans here

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