Tag Archives: orthostatic intolerance

2017 NIH Spending on ME/CFS Research

Posted on March 20, 2018 by Jennie Spotila

It is time to analyze how NIH spent its investment in ME research in 2017. NIH has not yet issued its own tally for 2017 through the categorical spending page, so I can’t say for sure how much money NIH … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , , | 20 Comments

Bottom of the Ramp

Posted on October 3, 2017 by Jennie Spotila

In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading →

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Unrest: Movie Review

Posted on September 12, 2017 by Jennie Spotila

Spoiler alert: This review discusses some specific scenes from Unrest. Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 15 Comments

2016 NIH Spending on ME/CFS Studies

Posted on November 1, 2016 by Jennie Spotila

Update: This post was revised on March 12, 2018 to reflect the addition of intramural research to the total. When I analyzed NIH’s spending on ME/CFS studies in Fiscal Year 2015, I concluded: The bottom line is that NIH is … Continue reading →

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

Tasha

Posted on October 14, 2016 by Jennie Spotila

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading →

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Case Definition Bingo

Posted on March 23, 2015 by Jennie Spotila

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

Posted on February 6, 2015 by Jennie Spotila

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 →

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Draft Systematic Review is UP

Posted on September 22, 2014 by Jennie Spotila

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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IV Saline: Magic Juice

Posted on July 28, 2014 by Jennie Spotila

Back in March, I started an experiment with IV saline. Four months in, I have learned a lot about how and when the treatment helps me. IV saline has been used to treat orthostatic intolerance for many years*, and some … Continue reading →

Posted in Occupying | Tagged , , , , | 9 Comments

Infused

Posted on March 19, 2014 by Jennie Spotila

I’m beginning a new experiment: IV saline. Regular saline infusions have been used by many ME/CFS patients to cope with orthostatic intolerance for years, but I’ve never taken them regularly. Yesterday, I received the first of four weekly treatments. How … Continue reading →

Posted in Occupying | Tagged , , , , | 18 Comments