Category Archives: Commentary

Not NICE

Last week, the ME community was expecting the National Institute for Health and Care Excellence (NICE) in the UK to publish new guidelines for the treatment of people with ME/CFS. Based on the draft guidelines published in November 2020, it … 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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Vaccine Melee

Here’s how I thought the process would work: The federal government would send a supply of vaccine to the state based on population demographics, and the state would send it out to the counties. The counties would control distribution to … Continue reading

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Vax Me

There is nothing I want more than to be vaccinated against COVID-19. I know many people in the chronic illness community, particularly people with ME and/or mast cell activation syndrome, are apprehensive about the COVID-19 vaccines. I feel the opposite: … Continue reading

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Darkness and Light

Today is the winter solstice, the longest night of the year. It’s a time of darkness in a hard winter, but also a time of light as the sun begins to return. Perhaps it is fitting that I face the … 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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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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I Want To Scream

I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things … Continue reading

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How Pandemic Response Measures Harm People With Disabilities

The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading

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