Tag Archives: pain

Case Definition Bingo

Our disease is plagued by too many case definitions, with the Institute of Medicine’s Systemic Exertion Intolerance Disease (SEID) being the most recent. Our federal agencies are thus far continuing the agnostic position of accepting whatever case definitions are proposed … Continue reading

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IOM: The Big Day

On February 10th, the Institute of Medicine committee will release its report Beyond ME/CFS: Redefining an Illness. The release event will be webcast at 11am Eastern. The report contents are under embargo until the release, although rumors are flying about … Continue reading

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

Draft Systematic Review is UP

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading

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ME/CFS Mortality

Does ME/CFS kill? This critical question has received very little attention from researchers, but there is a way for you to help change that. The first paper on causes of death in ME/CFS was published in 2006 by Dr. Leonard … Continue reading

Posted in Research | Tagged , , , , , , , , , , , | 23 Comments

P2P: It’s Not Just Us

I’ve been asked if it is too late to send an email to Dr. Francis Collins about the P2P Workshop. Definitely NOT! In fact, there is now a super easy way to send that email through a page on ME … Continue reading

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On It or In It?

I’ve been spending a lot of time in bed, recently. This is unusual for me. Usually, I’m ON the bed but not IN the bed. I see a really big distinction. On a normal day, I’m out of bed in … Continue reading

Posted in Occupying | Tagged , , , , | 17 Comments

Hypersensitive

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

Posted in Occupying | Tagged , , , , , | 2 Comments

Drug and FDA News, July 2013

The big BIG reminder for the ME/CFS community is that the public comment docket on drug development for ME/CFS will close on August 2, 2013. As of this morning, there are only 201 comments! That’s disappointing, given that FDA said … Continue reading

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Drug and FDA News, June 2013

We’ve had a good discussion in the comments on the advocacy action to request another meeting with FDA. I asked FDA if they would be pursuing Guidance to Industry on ME/CFS drug development, and was told it is already underway. … Continue reading

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What a Crash Looks Like

On the suggestion of my friend Claudia, I recorded a video of myself on the third day after the FDA Drug Development Workshop on ME and CFS. I had to swallow my pride to do this. Even some members of … Continue reading

Posted in Commentary, Occupying | Tagged , , , , , , , , | 31 Comments