Tag Archives: speaking out

Enough

I’ve been waiting until I felt well enough to post about my breast cancer surgery and recovery, about the treatment I will begin in January. I have words to say about experiencing the healthcare system as a person with cancer … Continue reading

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A Million More, and Counting

Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with … Continue reading

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Ten Years of Unreal Time

Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly … Continue reading

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The 2020 NIH Funding Fact Check

It is time, once again, for my annual NIH funding fact check. And, once again, NIH’s numbers do not add up. NIH claims to have spent $15 million on ME/CFS research in 2020. In reality, NIH spent slightly under $13 … Continue reading

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#MillionsMissing Book Review: A Still Life

Today is #MillionsMissing, a day to raise awareness and make people with ME visible to the world. As part of the event, people with ME are sharing their stories on social media but instead of sharing mine I’m going to … Continue reading

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David Tuller: Crowdfunding for Us All

I have supported David Tuller’s investigative journalism since he first began his crowdfunding campaigns,* but it has never been more important than right now. I urge you to join me in supporting his current fundraiser not only for yourself, but … Continue reading

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The Death Threat Myth Exposed

Update April 7, 2021: Further comment from Dr. Vicky Whittemore added to the end of this post. Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. … Continue reading

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NIH Funding for ME in 2020: Falling Flat

The 2020 Numbers Based on currently available numbers, NIH spent $11,696,985 on investigator-initiated grants and the Collaborative Research Centers in FY2020 (see note 1) That is basically flat with 2019 and 2018 spending. Here is how 2020 compared to 2019. … Continue reading

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The 2019 NIH Funding Fact Check

NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%. This gap between reality and NIH’s … Continue reading

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David Tuller: Making Progress Together

For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work. Five years ago this month, David … Continue reading

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