Tag Archives: post-exertional malaise

One Dance: Millions Missing 2018

I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 23 Comments

Return on Investment: David Tuller

When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , | 16 Comments

2017 NIH Spending on ME/CFS Research

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

FINALLY: RFA Funding Announced

This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading

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

CDC Website Update

In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , | 34 Comments

Unrest: Movie Review

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

Pediatric Primer Not For Prime Time

Guest post by Denise Lopez-Majano Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients. … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , | 41 Comments

RFA Ticker, 1/16/17

NIH issued no RFAs last week, but we have plenty to talk about after Dr. Vicky Whittemore’s presentation at the CFS Advisory Committee on Friday. Dr. Whittemore’s announcement was simultaneously welcome and disappointing. During her update to the committee on … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , , | 15 Comments

The Wall of Nope

I have reached a new low in life with ME. I call it: The Wall of Nope. The Wall of Nope is not a physical crash. It’s an inability to deal with obligations and necessary things. Here’s an example: I’m … Continue reading

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , , , , , | 44 Comments

2016 NIH Spending on ME/CFS Studies

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