Category Archives: Advocacy

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

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 13 Comments

The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

Guest post by Mary Dimmock Please sign this petition to fix the coding problem making Americans with ME/CFS invisible. If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US … Continue reading

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

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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , | 2 Comments

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

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

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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , | 1 Comment

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

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , , | 39 Comments

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

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

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

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 11 Comments

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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | Comments Off on David Tuller: Making Progress Together

NIH Funding for ME Needs Life Support

Fiscal year 2019 is over, and we can now examine how much NIH spent on ME research. In previous years, I’ve broken down the funding at a granular level. I have done that in a separate post for those who … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , | 2 Comments