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More on the Metabolomics Study

Reposted from the May 2016 Open Medicine Foundation Newsletter

Announcing the Expanded ME/CFS Metabolomics Study

We are very excited to announce an amazing new collaboration with Dr. Robert Naviaux and our very own Dr. Ronald Davis, director of our ME/CFS Scientific Advisory Board. As previously announced, Dr. Naviaux (of the University of California, San Diego School of Medicine) joined our Advisory Board and brings remarkable knowledge in metabolomics and mitochondria.

In addition to Dr. Naviaux and Dr. Davis, the new study is being conducted in collaboration with Dr. Paul Cheney and Dr. Eric Gordon’s team. Dr. Davis will correlate the metabolic findings with genetic results. [Read more…]

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What’s Wrong With Me?

The article is short and is supposed to be about an unclear auto-immune disease but it is about our patients. I’m sorry, but the full article is only available to subscribers or can be purchased from The New Yorker. – Eric Gordon MD

I had an autoimmune disease. Then the disease had me.

by Meghan O’Rourke
August 26, 2013 published in The New Yorker

Subscribers can read the full version of this story by logging into our digital archive. You can also subscribe now or find out about other ways to read The New Yorker digitally.

Illness narratives usually have startling beginnings—the fall at the supermarket, the lump discovered in the abdomen, the doctor’s call. Not mine. I got sick the way Hemingway says you go broke: “gradually and then suddenly.” One way to tell the story is to say that I was ill for a long time—at least half a dozen years—before any doctor I saw believed I had a disease. Another is to say that it took hold in 2009, the stressful year after my mother died, when a debilitating fatigue overcame me, my lymph nodes ached for months, and a test suggested that I had recently had Epstein-Barr virus. Still another way is to say that it began in February of 2012, on a windy beach in Vietnam; my boyfriend and I were reading by the water when I noticed a rash on my inner arm—seven or eight vibrantly red bumps. At home in New York, three days later, I had a low fever. For weeks, I drifted along in a flulike malaise that I thought was protracted jet lag. I began getting headaches and feeling dizzy when I ate. At talks I gave, I found myself forgetting words. I kept reversing phrases—saying things like “I’ll meet you at the cooler water.” . . .
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Meghan O’Rourke, Personal History, “What’s Wrong With Me?,” The New Yorker, August 26, 2013, p. 32

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Conversations with Eric Gordon, MD – Tracking Treatment, Rheumatoid Arthritis, and Lyme

Continuing the phone conversation with Eric Gordon, MD from August 16, 2011.

Dr. Eric GordonDR. GORDON:

Okay.  So, where were we?

Interviewer:

You were talking about having those high inflammation levels and how those impact how to decide what to treat.

DR. GORDON:

Ah, how to decide….yes.  At least for me what makes treatment so difficult is the noise. I mean in the sense of, when you start someone on a therapeutic trial, if you’re moving somewhere with them when they start antibiotics, and they begin to respond partially, and then they have some problems, which you fix, and then there is more partial response, and they have more problems.  After a while you’re doing a lot of fixing the problems, trying to do a lot of symptomatic therapy. [Read more…]