Monthly Archives: August 2013

IOM On The Case

No announcement and no fanfare, but it became public this week that the Office of the Assistant Secretary intends to award a sole source contract to the Institute of Medicine to create a consensus clinical definition for ME/CFS. Here’s the … Continue reading

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Directional Signs

Last week, the CFIDS Association announced the formation of a Research Advisory Council and its newly appointed members. A close look at the roster reveals some interesting signs about the direction the Association may be headed, and it may surprise … Continue reading

Posted in Research | Tagged , , , , , | 7 Comments

Drug and FDA News, August 2013

Next week, I will be attending the FDA’s Patient Representative Workshop for new patient reps. The meeting is 1.5 days of orientation and discussion, and I am eager to meet my fellow patient representatives. I will report back on the … Continue reading

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The Full Ninety

Ninety-one days have passed since the last CFS Advisory Committee meeting. As of the date and time of this post, none of the materials related to the meeting have been posted on the CFSAC website. Federal law requires that the … Continue reading

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CFSAC Interviews

Gabby Klein has written an article for Phoenix Rising that features interviews with CFS Advisory Committee members Dr. Gailen Marshall and Dr. Susan Levine, and non-voting members Dr. Kenneth Friedman, Leigh Reynolds and Dr. Fred Friedberg. It’s an interesting read, … Continue reading

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Lightning Book Review: How To Wake Up

It’s time to debut a new sometime feature on the blog: Lightning Book Review, quick reviews of about 500 words to give you my bottom line opinion. Our debut is Toni Bernhard’s new book, How To Wake Up, officially released … Continue reading

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FDA recently issued a warning about the risk of rare but serious skin reactions to acetaminophen. Widely known by the brand name Tylenol, acetaminophen is an active ingredient in many prescription and over-the-counter medicines for pain, headaches, migraine, cold and … Continue reading

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Need to Reality

One of the key moments of the April FDA meeting on drug development for ME/CFS was when Bernard Munos said that ME/CFS patients will have to collect and pool their data to attract the interest of big pharma. Many advocates … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , | 7 Comments