Your Signatures Have Been Delivered The deadline for the petition to the National Institute of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to stop the NIH intramural clinical ‘fatigue’ study and its presentation by Dr. Nath at CDC’s Tuesday’s Grand Rounds was completed Sunday Feb 14th at midnight. We are happy to report that the total count for signatures to the petition is 725. Your voices matter! Continue reading

    Note from Maryann Spurgin This book review, my evisceration of the Wessely school, was written in 1997, and since it is of relevance today, I have given permission to others to put it in their blog and on their sites. I want to make it clear, however, that if written today I would not use the terms "CFS" or "ME/CFS," since CFS is a govt construct that encompasses many diseases. In 1997, however, the term ME was not in use. Please read this keeping in mind that the article was from 1997. It you would like to read my other articles they are on my now-archived website: https://web.archive.org/…/20…/http://www.cfids-cab.org/MESA/ Continue reading

The Design of the Study Implies a Purpose MEadvocacy published a blog yesterday about the posted US National Institute of Health (NIH) Study 16-N-0058 Chronic Fatigue Syndrome (CFS) Clinical Summary which stated, “This study is currently recruiting participants.”  We presented flaws and weaknesses of the study. We have initiated a petition calling on NIH to cancel the study, and calling for the CDC to cancel Dr. Nath’s presentation of this study at Center for Disease Control’s Grand Rounds fast approaching, this Tuesday February 16th. (Please note the link to the protocol of the NIH study has gone dark early this morning. See this web archived link for screenshot.) Since then, unofficial NIH responses to criticisms of the study protocol have been circulating on social media.  Tracey Smith has written a great analysis of the remaining issues present with this proposed work. Continue reading

  The Promise Dr. Francis Collins, director of the NIH, in a statement of October 2015, promised the ME/CFS community that he will take actions to bolster research on the disease.  He assured us by stating that he will “intensely study individuals with ME/CFS”.  Among other promises, he revealed that an intramural study at the NIH clinic will commence shortly involving researchers from several of NIH’s institutes including NINDS.  This news of renewed interest by NIH toward ME/CFS research was highly praised by many advocates, patient organizations and non-profit research organizations. Recently, it was revealed that Dr. Avindra Nath, chief of infections of the nervous system section of the NINDS will be presenting at the CDC Grand Rounds meeting on February 16, 2016.  His topic of discussion will be "Post-Infectious Chronic Fatigue Syndrome: Intramural Research at the National Institutes of Health".  The news that such a well respected researcher was getting involved with ME/CFS was hailed by advocates as proof that NIH means business this time. MEadvocacy issued a blog warning of the premature sentiments of satisfaction: “Why MEadvocacy Does Not Applaud the News from NIH...Yet”.  We explained why we were skeptical of these promises based on previous biased actions by NIH and CDC toward ME patients.  In addition, we pointed out that these were just mere words.  We were holding our applause until we saw tangible actions. Continue reading

  “If you want to understand today, you have to search yesterday." ~Pearl Buck In order to understand the enigma of a hidden epidemic of one million men, women and children in the U.S. suffering from the debilitating disease, myalgic encephalomyelitis, one needs to understand the history of the disease. Hillary Johnson wrote the epic book‘Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic’ where she depicts the history of the disease, spending nine years investigating the failure of the medical establishment to take the disease seriously as well as repeated governmental health agency malfeasance. Her book documents the history from 1984 to 1995. Continue reading

  ERISA laws are very complicated and we are grateful to Jeannette Burmeister for her excellent blogs outlining the new proposed additional laws which will benefit patients in their fight for long term disability. This is a complicated matter and in our attempt to simplify, we have taken shortcuts with our blog about the subject issued on 12/31/05, which we regret.  All credit for bringing this issue to the attention of the ME community as well as the interpretation of intricate details should go to Jeannette Burmeister. We refer you to Jeanette’s two blogs on the subject for complete information about the issue and how to participate, including a sample letter: Thoughts About M.E. blogs ‘Department of Labor Proposes Lowering Bar for ERISA Disability Claims, Requests Public Comments’ and ‘Proposed ERISA Disability Regs: Instructions and Sample for Public Comments’.