Tag Archives: case definition

A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , , , | 20 Comments

AHRQ Evidence Review Changes Its Conclusions

Mary Dimmock has led the way on this issue, and is co-author of this post. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 47 Comments

Scandal

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 19 Comments

PACE-Gate

It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 9 Comments

Staying the Course to Where?

Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said: So please take our commitment with great seriousness. Please also stay the course … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 17 Comments

A Request That Should Not Be Ignored

Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading

Posted in Commentary, Research | Tagged , , , , , , , , | 13 Comments

No CDC Funding for CFS?

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 225 Comments

P2P: Where Next?

There is one official final step in the P2P process: a federal partners meeting supposed to be held six to eight months after the workshop. But there are other marching orders, too. For us. Federals Only As described on the … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , | 10 Comments

Showing the Back of Their Heads

The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , , , | 42 Comments

P2P Final Chapter

The final P2P ME/CFS documents are coming out today. I am severely crashed from family obligations, so in-depth analysis will take me a little longer than normal. But here are quick descriptions of the various articles to get you started: … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , | 32 Comments