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U.K. patients describe Myalgic Encephalomyelitis (ME) or (ME/CFS)

*Often called chronic fatigue syndrome (CFS) or ME/CFS


Video by M.E. Action

Patients like these are why Dr. Gordon began research into chronic illness. Find out about our Science in Service of Humanity metabolomics research in CFS/ME. Read our published study, “Metabolic Features of Chronic Fatigue Syndrome,” watch for the next study to be published in the fall of 2017, sign up to participate in new research as a patient or a healthy control, and donate to support the work.

Evidence that CFS truly does deserve all three elements of its name has accumulated over the years but a definitive diagnostic test has remained elusive. Until, perhaps, now. For in this week’s Proceedings of the National Academy of Sciences Robert Naviaux of the University of California, San Diego, and his colleagues published evidence that the metabolisms of those diagnosed with CFS are all changing in the same way. Their data suggest it is this cellular response to CFS-triggering traumas, and not the way the response is set in motion, which should define the illness. They also show that this response produces a chemical signal that might be used for diagnosis.

The Economist

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Health Rising – Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)

Health Rising
 
 
by Cort Johnson | Dec 13, 2016
 

Personalized treatment plans will require addressing the core metabolic abnormalities found in most ME/CFS patients plus the individual metabolic issues found of each patient.

Treatments that work for a time and then stop could be the result of not addressing all the metabolic needs of an individual.

Cort Johnson – “Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)”

The day after my brother’s wedding I shot down to San Diego to meet Rachel Riggs and a doctor with ME/CFS. Rachel, who has turned into a volunteer patient coordinator had enrolled me in Naviaux’s next metabolomics study. (Resistance, I quickly surmised, was futile – not that I was putting up any.) Rachel chatted away on the phone with another potential participant as we drove down to Naviaux’s lab. I was one of the last to give blood. editor’s note: Cort actualy enrolled in the 2nd Metabolomics study. SISOH is now recruiting for a 3rd study.

After I gave a surprising small amount of blood we tromped down the hall to meet with Dr. Naviaux in his workroom, the industrial looking pipes overhead bringing back memories of college labs in the past. Ducking into one lab Rachel showed me two $500,000 dollar mass spectometer machines each the size of a large microwave.

Gracious, as always, Dr. Naviaux offered us some coffee or tea. A bit spacey from my fast I tried out some green tea – at which point my nose immediately stopped up. At the first sound of my sniffles Naviaux turned to me and said we would have to note that for the study. (No one with a cold is allowed in the study.) Those sniffles cleared up later. (Dr. Naviaux, if you read this I promise it was from the tea…)

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Eric Gordon, co-author on CFS metabolomics study, to speak at Millions Missing Rally in San Francisco

millions-missing-campaignEric Gordon, MD, co-author of the groundbreaking study, “Metabolic features of chronic fatigue syndrome“, recently published in the Proceedings of the National Academy of Sciences, will be speaking at the Millions Missing San Francisco rally as part of the global protest for ME/CFS rights.

[Read more…]

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IACFS/ME Conference Overview: Research on CFS/ME

11th International IACFS/ME Conference
Translating Science Into Clinical Practice
San Francisco, CA March 20-23, 2014

Integrative conference themes focused on fatigue, post-exertional malaise, pain, sleep, pediatrics, cognition, and brain function in CFS/ME and Fibromyalgia. Research and clinical topics will also encompass fatigue in diseases including cancer, autoimmune diseases, multiple sclerosis, pain conditions, mood disorders, and circulatory diseases.

One Person’s Highlights of the Biological Research Presentations
Anthony L. Komaroff, M.D.

The same excellent audio summary of the IACFS/ME San Francisco conference presented by Anthony Komaroff, MD may be listened to here:

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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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Rich Van Konynenburg / In Memoriam

I am very sorry to let you know that Rich Van Konynenburg, PhD, died quietly early Tuesday morning. His wife contacted our doctor’s group to let people know, and asked that the information be passed on to those who might need to know. He appears to have suffered a heart attack.

Dr. Van Konynenburg was a generous man who spent much of his free time thinking of how to help patients with Chronic Fatigue Syndrome, Autism, and other possibly related illness. Though he was not a medical professional, he had a curious and methodic mind, which he put to use to come up with ideas that would be of help to others. Rich believed it is possible that a methylation block, causing glutathione depletion was an important trigger in causing symptoms in Chronic Fatigue Syndrome, and he developed the Simple Methylation Protocol as an over the counter treatment for patients to experiment with.
[Read more…]

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Lipkin Study – No Association Found Between CFS/ME and either XMRV or PMLV Retroviruses

The full study is available online:

A multi-center blinded analysis indicates no association between Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and either Xenotropic Murine Leukemia Virus-related virus or Polytropic Murine Leukemia Virus

While Dr. Lipkin stated that no evidence of these retroviruses was found, but the research into the cause of CFS/ME WILL NOT BE ABANDONED. Dr. Harvey Alter emphasized that he feels it is essential to [Read more…]

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Pending Announcement of the Follow Up Studies to Retroviral Causes of CFS/ME

CII Press Conference: Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Posted 9/13/2012 10:55:59 AM

CII Press Conference

September 18th, 2012

10:30 AM (EDT)

“Multicenter Study on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis”

The causes of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have long eluded scientists. In 2009/2010, two high-profile papers linked the syndrome to infection with a mouse retrovirus called XMRV (xenotropic murine leukemia virus (MLV)-related virus) and murine retrovirus-like sequences (designated pMLV: polytropic MLV). Given that affected patients often have symptoms consistent with a chronic infection, this viral connection was deemed plausible, and the findings were celebrated as a major achievement for a complex disease that afflicts nearly 1 million in the U.S.

However, follow-up investigations by several laboratories were unable to detect XMRV or pMLV in CFS patients.

[Read more…]