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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

Update on SISOH Metabolomics Research 4/6/17

Science in Service of HumanityFrom Eric Gordon, President Of Science in Service of Humanity

Many of you are probably wondering where we are with the SISOH research. Good news is that Kelly Fox, previously one of the Medical Assistants at GMA, has come on as a full-time Research Coordinator! Kelly is very experienced in working with chronically ill patients, and we think you will find her a delight to work with.

Our ongoing CFS/ME studies are group studies working to develop an accepted group of biomarkers to define people with CFS/ME. We have enrolled all the patients in the replication study with Dr. Cheney, and hope to publish that in fall of 2017. Read More

Gathering Participants For Study Of The Needs Of Persons With Environmental Sensitivities

The James Madison University Environmental Sensitivities Research Team is inviting adults aged 21 and over who have experienced environmental sensitivities (chemical and/or electrical) to participate in on online study of how their needs are being met as they grow older with sensitivities.

If you are interested in participating, please click on the link below to see the consent form and learn more about the study. If you are unable to complete the survey online, you are welcome to request a hard copy that can be mailed to you. To request a hard copy please email gibsonpr@jmu.edu or call 540-568-6195 and leave a message with you name (clearly stated) and your complete address.

Thank you ahead to everyone who helps me with this study.

To take the survey online, copy this url into your browser:

http://jmu.co1.qualtrics.com/SE/?SID=SV_4YGd1uBrKkxx8nr

Pamela Gibson, Ph.D., Professor of Psychology
James Madison University, MSC 7704
Harrisonburg, VA 22807
540-568-6195

Sign Up to Receive Updates

Science in Service of Humanity

Genes are ancestor based. Metabolites are how you are doing now.

If you are curious to be updated on our research please check the Research News section on the SISOH website. This is the most up to date information. You can subscribe to this blog by inputting your email in the subscription box on the sidebar.

 

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

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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MEDSCAPE – Biomarker Research Advances in ‘Chronic Fatigue Syndrome’

Miriam E. Tucker
Medscape – November 08, 2016

In addition, in an “unbiased” metabolomics study using mass spectrometry, metabolites that differed most between 17 patients with ME/CFS and 15 healthy participants involved pathways harvesting energy from glucose, fatty acids, and amino acids.

The finding, suggestive of a general hypometabolic state, corresponds to another recent study published in the Proceedings of the National Academy of Sciences. The specific metabolites differed between the two studies, but, Dr Komaroff said, “it’s consistent. It says that some types of metabolic pathways are downregulated in this illness, whereas others like those involving immunity and inflammation are upregulated.”

FORT LAUDERDALE, FL — New research adds to growing evidence that the illness commonly known as chronic fatigue syndrome is biologically based, researchers report here at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) research and clinical conference. Some of the abnormalities identified suggest potential clinical diagnostic tests and targeted treatments.

The condition, now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) by US government bodies, has long confounded the medical community because, although patients may be severely debilitated and exhibit numerous abnormal physical findings, no specific biomarker has been found to conclusively make the diagnosis.

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Metabolomics Study Update 12/14/16

From Asha Baxter
AIMS Research Coordinator

We are finished with the blood collection for the 2nd study! This is the replication study of the intial “Metabolic features of chronic fatigue syndrome,” with the replication testing being done with Dr. Paul Cheney’s patients. The blood samples are all in and have been shipped to the Naviaux lab to be analyzed. Very exciting accomplishment since the 1st study took a great deal longer to get samples in. We are moving in a upward and onward direction. Metabolic results and a new published study should be expected in 2017.

We also have found a device that stores and holds blood for shipping so we can start collecting samples from around the world. We know that we have a growing community of individuals who would like to participate in our AIMS research from over seas. We are still in testing mode with this and will update when we have confirmation that the container safely transfers blood.

If you would like to participate in the Analyzing Individual Metabolimics Study (AIMS), sign up now to be placed on the list.

MyLymeData 3-month follow-up survey launched

MyLymeData

From Lorraine Johnson, JD, MBA at LYMEPOLICYWONK

Originally published on LymePolicyWonk on November 15, 2017

Last year, LymeDisease.org launched MyLymeData–a national patient-centered big data project. Today it is the largest study of Lyme patients ever conducted, with over 6,000 currently enrolled. Our goal is 10,000 participants. MyLymeData allows patients to pool their data to help find a cure.

This week we are rolling out MyLymeData’s three-month follow-up survey, which tracks patient symptoms, treatments, treatment response, and functional status on a quarterly basis. This survey holds the key to questions patients care about. What treatments work? Why do they work for some people and not others?

The three-month survey also seeks to find out whether patients with Lyme disease tend to have other related diseases, like Parkinson’s disease or lupus. We ask about whether Lyme disease runs in the family. Do mothers pass it along to their children? Is it passed from husband to wife?

Read More

More from Dr. Naviaux on metabolics and Chronic Fatigue Syndrome

Dr. Naviaux has responded to some comments on the groundbreaking paper, “Metabolic Features of Chronic Fatigue Syndrome”.

In this response he addresses the need for metabolic studies in other disease groups, whether metabolic studies determine the initial cause of sysmptoms, and how dauer states relate to what is seen in CFS.

We thank Vogt et al. for their comments (1). We respond to their three points in order. First, we are aware of the need to extend future metabolomics studies to include other disease groups. We stated this fact in the discussion of ref. 2 and are validating the results in independent cohorts. The detailed biochemical phenotype or signature that we found provides a first glimpse at a previously hidden biology. For example, disturbances in sphingolipid metabolism have important implications for immunobiology and neuroendocrine regulation relevant to myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) (3). Sphingolipids are important mediators of the cell danger response (CDR) (4), and the CDR is an important regulator of the behavioral and functional changes produced by infection, and associated with sickness behavior (5). The biochemical phenotype of ME/CFS is distinct from other diseases that Vogt et al. (1) named. For example, in heart failure, metabolomics shows that long chain acyl-carnitines are increased (6), but these long chain acyl-carnitines were not changed in ME/CFS (2). In our view, chemistry and metabolism underlie all aspects of human biology. Our studies show that metabolomics can be used as a new lens to reveal unexpected biology that was invisible before…

Robert Naviaux, et all

Read full response.
Read the letter the response was based on.

PARTICIPATE in metabolomics research at SISOH.

Support CFS/ME Research by Shopping at AmazonSmile

Now you can support Gordon Medical’s research into CFS/ME and other chronic illness by shopping at AmazonSmile. Just use the link here in the post and your purchases will help support Gordon Medical Research Center’s fundraising efforts. For eligible purchases at AmazonSmile, the AmazonSmile Foundation will donate 0.5% of the purchase price to the customer’s selected charitable organization. AmazonSmile is the same Amazon you know. Same products, same prices, same service.

We hope you select us!

 

We are currently fundraising for the Analyzing Individual Metabolomics Study (AIMS), our third research study on the use of metabolomics in CFS/ME. Our first study resulted in the ground breaking research, “Metabolic features of chronic fatigue syndrome,” published in the Proceedings of the National Academy of Sciences. Our second study, a replication study with a larger group of CFS patients, has completed enrollment, and is processing the data collected. Our thirds study, AIMS, is now recruiting participants and fundraising. We will be looking at how comprehensive metabolomics analysis can be used to evaluate CFS/ME. AIMS builds on our previous studies, which have demonstrated there is a clear metabolomic profile in patients with CFS/ME. The more funds we are able to raise, the more participants we can include in this important research. To find out more about our research, or to sign up to participate, go to our research website at Science in Service of Humanity (SISOH). You can also make a tax deductible donation directly to the Gordon Medical Research Center.