Wednesday, August 31, 2016

Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

By Scott Lafee

Press Release: U.C. San Diego, August 29, 2016. Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause. But researchers at the University of California San Diego School of Medicine, using a variety of techniques to identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation.

Dauer is the German word for persistence or long-lived. It is a type of stasis in the development in some invertebrates that is prompted by harsh environmental conditions. The findings are published online in the August 29 issue of PNAS.

“CFS is a very challenging disease,” said first author Robert K. Naviaux, MD, PhD, professor of medicine, pediatrics and pathology and director of the Mitochondrial and Metabolic Disease Center at UC San Diego School of Medicine. “It affects multiple systems of the body. Symptoms vary and are common to many other diseases. There is no diagnostic laboratory test. Patients may spend tens of thousands of dollars and years trying to get a correct diagnosis.”

As many as 2.5 million Americans are believed to have CFS. It most often afflicts women in their 30s to 50s, though both genders and all ages can be affected. The primary symptom is severe fatigue lasting at least six months, with corollary symptoms ranging from muscle pain and headaches to sleep and memory problems.

Naviaux and colleagues studied 84 subjects: 45 men and women who met the diagnostic criteria for CFS and 39 matched controls. The researchers targeted 612 metabolites (substances produced by the processes of metabolism) from 63 biochemical pathways in blood plasma. They found that individuals with CFS showed abnormalities in 20 metabolic pathways. Eighty percent of the diagnostic metabolites measured were decreased, consistent with hypometabolic syndrome or reduced metabolism. The diagnostic accuracy rate exceeded 90 percent.

“Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability.”

Naviaux said the findings show that CFS possesses an objectively identifiable chemical signature in both men and women and that targeted metabolomics, which provide direct small molecule information, can provide actionable treatment information. Only 25 percent of the metabolite disturbances found in each person were needed for the diagnosis of CFS. Roughly 75 percent of abnormalities were unique to each individual, which Naviaux said is useful in guiding personalized treatment.

“This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.”

The study authors noted additional research using larger groups of participants from diverse geographical areas is needed to validate both the universality and specificity of the findings.

Co-authors include: Jane C. Naviaux, Kefeng Li, A. Taylor Bright, William A. Alaynick, and Lin Wang, all at UC San Diego; and Asha Baxter, Neil Nathan, Wayne Anderson, and Eric Gordon, Gordon Medical Associates.

Funding for this research came, in part, from the UC San Diego Christini Fund, The Wright Family Foundation, The Lennox Foundation, the It Takes Guts Foundation, the UC San Diego Mitochondrial Disease Research Fund and gifts from Tom Eames and Tonye Marie Castenada.

For more information about CFS and mitochondrial research, visit

Journal Reference: Robert K. Naviaux, Jane C. Naviaux, Kefeng Li, A. Taylor Bright, William A. Alaynick, Lin Wang, Asha Baxter, Neil Nathan, Wayne Anderson, Eric Gordon. Metabolic features of chronic fatigue syndrome. Proceedings of the National Academy of Sciences, 2016; 201607571 DOI: 10.1073/pnas.1607571113

Tuesday, August 30, 2016

Urgent Call to Action! Support Congressional Call for Increased ME/CFS Research!

By Mass CFIDS/ME and FM Association

You can help if you ACT NOW !!

A letter in support of ME/CFS research to NIH Director Dr. Francis Collins, sponsored by two Representatives from California, is now circulating in Congress (House of Representatives) and we need as many U.S. Representatives as we can to be co-signers. Please CALL and send a FOLLOW-UP EMAIL to your U.S. Representative (not your Senators) and urge him or her to sign this letter. Complete instructions, including a phone and email script which you can personalize, can be found here. The number of calls to each Congressional office to make this request really matters. Your Representative may not be inclined to act as a result of one or two calls, but 10 calls will make a strong statement. Please call right away. The deadline for your Representative to sign the letter is this coming Wednesday, August 31.

This action is the result of months of hard work by #MEAction, Solve CFS/ME Initiative, and the U.S. Action Working Group Congressional Committee.

GET and CBT have been downgraded as treatments for ME/CFS as a result of follow up work by the Agency for Healthcare Research and Quality.

In the initial Evidence Review prepared by AHRQ as input to the Pathways to Prevention (P2P) report commissioned by NIH, studies evaluating the effectiveness of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) which used subjects meeting only the Oxford case definition (6 months of fatigue). Based on the initial inclusion of studies using the Oxford definition, notably the PACE trials, the Evidence Review suggested that GET and CBT were "moderately effective" treatments. The P2P report recommended that the Oxford definition no longer be used, and the PACE research has come under increasing criticism for its methodology.

As a result of advocates requests, AHRQ re-analyzed the evidence for GET and CBT, without including any studies based on the Oxford definition (e.g. PACE). The conclusion was that there was no evidence to suggest that GET or CBT were effective treatments for ME/CFS. Read more here

This outcome is the direct result of repeated requests to AHRQ by advocates. Advocates' next step is to make sure that this change is strongly noted in future medical education materials, particularly the websites commonly used by doctors, such as the Centers for Disease Control and Prevention (CDC), Mayo Clinic and Up To Date.

You can find your congressional representative HERE.

Email Template:

Dear ___________ (name of representative goes here)

I’m emailing with an urgent request regarding the disabling neuro-immune disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS.
Representatives Lofgren and Eshoo of California are sponsoring a letter to NIH Director Francis Collins in support of ME/CFS patients and research. ME/CFS costs the U.S. economy $17-24 billion annually; leaves its patients with lower quality of life scores than lung cancer, stroke, and rheumatoid arthritis; and has no known FDA-approved treatment or cure. Would you please support me and the 1 to 2.5  million Americans suffering from this disabling disease, by signing this letter? It would mean the world to me, my family, and other ME/CFS patients in our district to have your support.

Please contact Angela Ebiner, Legislative Assistant for Rep. Zoe Lofgren (CA-19) at or (202) 225-3072 to coordinate your participation. The letter’s deadline is 8/31.

Thank you so very much for your support on this critical action. I look forward to your reply on this request at your earliest convenience.

Warmest Regards,
[Your Name]
[Your Contact Info, Including address and +4 zip]
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