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November 2012

by Cort Johnson

“Other patients suffer a severe, long lasting illness, for which treatment is ineffectual, and even after the parasite has finally been eliminated, some sequelae persist, affecting quality of life and continuing to cause the patient discomfort or pain” (LJ Robertson et al, 2010)

Giardia is an interesting bug. Perhaps the most common intestinal parasite in developing areas, it’s not generally considered much of a threat in the developing world, but with a lowball figure of 20,000 cases the US in 2010 some researchers think of Giardia as a ‘re-emerging’ infectious disease.

Giardia, though, is not normally considered a serious infection.… Read More


by Jody Smith

A year ago, on Nov. 15, 2011, the Achieving a Better Life Experience Act (ABLE Act – HR 3423/S 1872) was introduced in Congress. On the one-year anniversary of the introduction of the bill, a press conference was held to build on the continuing support to make changes to the U.S. tax code. Since its introduction last year in the 112th Congress, the bill has gained support from 234 House Members and 40 Senate Members.

If passed, the ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986, so that tax-free savings accounts would be available for disabled individuals.… Read More


by Sasha

Simarron Research LogoI saw 10 pence on the pavement yesterday. It was lying in some mud so I didn’t pick it up. I wish I had now: I’d forgotten it was really worth four quid.

How come? Because if the Simmaron Research Foundation can get $225,000 for a pilot study, it will bag them a guaranteed $800,000 from an Australian charitable foundation for the large-scale follow-up. Simmaron call this multiplying your donation by five. However, they’ve already raised most of the money for the pilot and only need $20,000 more, so at this point, every dollar you give is worth forty!… Read More


by Cort Johnson

Before XMRV was Kogelnik/Montoya…the 2006 unblinded Kogelnik/Montoya study, finding that 6 months of Valcyte use returned 75% of participants to full health, hit the community like a lightning bolt. Yes, the study was very small (12 people) and it was unblinded, but the stories of recovery were so dramatic that it was hard to imagine they hadn’t hit gold. All that was left, it seemed, was to document the progress with a more rigorous, placebo-controlled study that appeared to be under way.

“These preliminary clinical and laboratory observations merit additional studies to establish whether this clinical response is mediated by an antiviral effect of the drug, indirectly via immunomodulation or by placebo effect.” (Kogelnik et al, 2006)

Six years later that study has still not shown up.… Read More


by Jody Smithhands around the world

The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending.

There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about the origins and history of the FDA, as well as about several other severe health conditions including HIV/AIDS, cystic fibrosis and muscular dystrophy. An advocate for CF and another for MD spoke at length about the challenges that faced them in the early days of advocacy in bringing attention, funds and support to those suffering with these diseases.… Read More


This Sunday November 18th, members of the ME/CFS, Lyme and MCS communities are invited to join together in a teleconference to say “Thank you; We love you; Goodbye” to Rich Van Konynenburg.

All are invited to the
ME/CFS, Lyme and MCS community’s
Memorial Service
Rich Van Konynenburg
November 18, 2012


On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying “Thank you; We love you; Goodbye,” to our beloved community leader, Rich Van Konynenburg.

We will be joined by Rich’s wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr.Read More


by Cort Johnson

It’s no fun when your ‘gas tank’ is empty. In fact it’s crazy how many of us are running on fumes on so many levels…personally, medically, financially…How nice it would be, out of the blue, to have a little fill up once in a while.

With the winners of the contest riding away with a cool $5,000 in Citgo gas cards, the Citgo Refueling Contest provides a chance, literally, to fill chronic fatigue syndrome patients’ gas tanks. I was a lucky recipient of one of those cards from a past winner and I can tell you it made a big difference during a difficult month financially.… Read More


By Jody Smith

diagram for krebs cycle

Energy. It’s defined by Merriam-Webster.com as the force that drives and sustains mental activity, and the capacity for doing work. ME/CFS is noteworthy for a dearth of it.

Anyone with ME/CFS knows all too well what it’s like to be so exhausted that we can’t lift our heads. We have very likely had the experience of being stopped mid-thought as the mental energy used by our brains seems to simply disappear. We know what it is to be unable to sit upright, or to walk down a hallway, because we do not have the energy.

When we say we lack energy we don’t mean what other people do by that.… Read More


by Cort Johnson

The results of the Presidential election leave the ME/CFS Community with a chance and some hope, but no guarantees of major change…


With President Obama in office, the National Institutes of Health (NIH) will remain as budget challenged as ever, and the chances of getting significantly more funding remain low at best, but as the country digs its way out of the worst recession since the depression there is some cause for hope. When President Obama sent Nancy Ann De Parle – a high-level aide with experience in health care matters – to confer with Department of Health and Human Services (DHHS) leaders, he became the first President to advocate for – or even acknowledge – Chronic Fatigue Syndrome.… Read More


teacup and teapotby Jody Smith

Adrenal fatigue may respond favorably to the use of adaptogenic herbs. An adaptogenic herb helps the body to normalize after times of stress. It decreases hormone secretions when levels are too high, and increases hormones when levels are too low. Many athletes like adaptogens because the herbs enable their bodies to recover faster from an intense workout or competition.

Traditional Chinese medicine and Ayurvedic medicine have made use of adaptogenic herbs for centuries. A few of these herbs, like ginseng and echinacea, have become known to the general public.  But there are plenty of other adaptogenic herbs to choose from.

Read More


By Jody Smith

ME/CFS is not the only condition that the medical community can’t seem to reach a consensus about. Adrenal fatigue is another topic that raises conflicting opinions from different quarters. Is it a valid diagnosis? Is it not? Is this the paradigm of how the adrenals work? Is that paradigm closer to the truth? The debate goes on.

But let the argument continue in medical circles. In the meantime sick people are trying to find ways of getting well. The following paradigm for adrenal function and fatigue is one that has brought some healing for many that are ill.… Read More