Archive for Advocacy

ACT NOW: Just Say NO to Funding Cuts for ME/CFS Research

ALERT: Senate Cuts CDC's funding for CFS to Zero, gutting 50% of federal research funding for ME/CFS NO Funding Cuts:  One Clear, Consistent Demand for Equal Funding By Robert and Courtney Miller and Cort Johnson While patients advocate for Equal Funding for ME/CFS research, the Senate Appropriations Read more [...]

How Fibromyalgia Got to Be the Worst Funded Disease at the NIH

Fibromyalgia gets about  double the funding of chronic fatigue syndrome, but of all the female dominated chronic illnesses found in the NIH's bottom forty in funding, only endometriosis gets lower funding per person (about $1/year).  In fact, per person affected ME/CFS receives five times funding Read more [...]

The NIH’s Blindspot: The Real Reason ME/CFS and FM Funding Stinks – Conclusion

The Bottom Forty at the NIH The first part of this blog series was focused on chronic fatigue syndrome and fibromyalgia. Now, in an effort to understand why these disorders get such poor funding, the focus broadens to the bottom forty of the two hundred plus conditions and disease categories the NIH Read more [...]

The Real Reason Chronic Fatigue Syndrome and Fibromyalgia Get Lousy Funding: Pt I

The cause of chronic fatigue syndrome's decades long funding problems have prompted much speculation and finger-pointing. If only the CDC had taken the Incline Village outbreak seriously, or if Stephen Strauss had never showed up at the NIH, or if Bill Reeves hadn't take over the CDC or if Fauci, Read more [...]

A Pathway To Progress: The Final P2P Report on Chronic Fatigue Syndrome Highlights Needs

Furthermore, limited knowledge, insufficient research funding, and a lack of diagnostic tools diminish a clinician’s ability to provide optimal care. P2P Report Press Release Funded by the NIH'S Pathways to Prevention (P2P) program to identify research gaps and methodological and scientific weaknesses Read more [...]

Is Chronic Fatigue Syndrome (ME/CFS) Stuck?

(Thanks to Dr. Gurwitt for allowing Health Rising to post his revised blog. I added the images and altered the title and headlines - Cort) NO SIGNS OF LIFE AT THE BIG HEALTH AGENCIES I believe only strong outside forces will cause HHS and NIH to move in constructive ways. Alan Gurwitt M.D. Over Read more [...]

Tipping Point? The Stanford Chronic Fatigue Initiative’s Big Year Is Here

We are at the tipping point in our scientific pursuit to identify the biomarkers and central abnormalities of ME/CFS. Several treatment interventions will stem from our work and that of other institutions. We believe that by applying the appropriate methodology and technology, we will be able to conquer Read more [...]

ME/CFS and Fibromyalgia As Functionally Impairing As Major Diseases in Medical World

The study urges the need for more research on FSS, a relatively neglected research area. Especially studies on a better understanding of the etiology and treatment of these disorders are needed. The authors The term functionally somatic syndrome does not have a great history. A 1999 Annals of Internal Read more [...]