Search Results for: IOM

IOM Panel Announced

Posted on December 3, 2013 by Jennie Spotila

The Institute of Medicine has posted the provisional panel for public review and comment. I am working with a group of advocates to research all the members, seek out bias or conflicts of interest, and bring that information to you … Continue reading →

Posted in Advocacy | Tagged , , , | 34 Comments

IOM Conflict of Interest Policies

Posted on November 6, 2013 by Jennie Spotila

After my post on the basic process of an Institute of Medicine study, I received a number of questions in the comments and on Phoenix Rising about the definition of “conflict of interest” as distinguished from “bias.” I reached out … Continue reading →

Posted in Advocacy | Tagged , , , , , | 54 Comments

IOM Process Check

Posted on November 4, 2013 by Jennie Spotila

Controversies continue to swirl around the Institute of Medicine’s study to create a clinical case definition for ME/CFS. I have new information to share, as well as important information about the process IOM uses for its studies. In preparing this … Continue reading →

Posted in Advocacy | Tagged , , , , , | 38 Comments

IOM On The Case

Posted on August 29, 2013 by Jennie Spotila

No announcement and no fanfare, but it became public this week that the Office of the Assistant Secretary intends to award a sole source contract to the Institute of Medicine to create a consensus clinical definition for ME/CFS. Here’s the … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , | 5 Comments

The 2019 NIH Funding Fact Check

Posted on October 28, 2020 by Jennie Spotila

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

Another NIH Funding Fact Check

Posted on May 29, 2019 by Jennie Spotila

In April 2019, NIH finally published their funding numbers for ME/CFS research in 2018. That means it is time for another fact-check and correction! Update October 16, 2019: as explained below, I received more accurate numbers from NIH and have … Continue reading →

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

NIH Time Warp

Posted on June 7, 2018 by Jennie Spotila

Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt: First, … Continue reading →

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

The NIH Pilot Program: Wait and See

Posted on May 21, 2018 by Jennie Spotila

MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 50 Comments

One Dance: Millions Missing 2018

Posted on May 12, 2018 by Jennie Spotila

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

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