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
We have previously posted about Dr. Unger’s invitation to MEadvocacy requesting our participation in the Technical Development Workgroup (TDW) for the Center of Disease Control and Prevention (CDC), here. We explained why MEadvocacy decided to opt out of the CDC’s workgroup. We subsequently got another email from Dr. Unger which we are posting below as well as MEadvocacy’s reply to Dr. Unger. The reason for posting this on a public blog is in the interest of transparency as well as further explanation of MEadvocacy’s stance. 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
MEadvocacy, along with other patient organizations and advocates have been invited to serve on a Technical Development Workgroup (TDW) for the Center of Disease Control and Prevention (CDC). The role of this group will be to provide input on educational materials to doctors and upgrading the CDC website based on the IOM report. The advisory group of MEadvocacy deliberated whether we would serve ME patients best by presenting the “ME view” at this working group. We ultimately decided against taking part in this workgroup based on the fact that a key question we asked Dr. Unger about what information could be brought up at these meetings, was not directly answered. Continue reading
Today, January 19, 2016, is the deadline to submit comments to the Department of Labor’s proposed new rules to the ERISA law which govern long term disability (LTD) policies. Jeannette Burmeister brought this issue to light with her blogs summary of the proposed rules, instructions and sample comment and additional guidance for commenting, MEadvocacy’s advisory group composed and submitted their comment in the hope that these new rules affecting ERISA law, if adopted, will improve the chances for disabled ME patients to collect their long term disability benefits. As we have outlined in the comment, many ME patients have had to struggle in their quest for LTD benefits. Too many have lost the fight and have been left in financial hardship. The cards have been stacked against patients for too long. We are particularly grateful for the review, legal analysis and revisions by Jeannette Burmeister. 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’.
Today an announcement went out about a new US Action Working Group which has been formed with the intent of increasing impact in advocacy efforts, with allowance that some of the group’s members can opt in or out of different projects. MEadvocacy was recently invited to join this group. Our advisors spent several days in communication with the organizations and individuals clarifying the plans involved in defining this group. After much deliberation, we decided we will better serve the ME patients that we represent by continuing as we have in the past, therefore we opted out of the group. We will continue with our stated mission and pursue our declared goals of advocating for ME criteria (CCC or ICC or better) to be used for diagnostic and research criteria in the US, as well as urging the NIH to fund ME research to the order of $250 million a year which is commensurate with other similarly burdened diseases. This has been our direction from the start; being a voice for the myalgic encephalomyelitis community, with a strong focus on the severely affected.