Tag Archives: recommendations

The NIH Pilot Program: Wait and See

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

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

Grant Review

Disclosure: I participated in the preparation of one of the Collaborative Research Center applications. Today and tomorrow, the applications for ME/CFS Collaborative Research Centers and Data Coordinating Center are undergoing peer review at NIH. It’s a very important stage in … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 10 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

The Halfway Point

We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the … Continue reading

Posted in Research | Tagged , , , , , , , , , , , , , | 6 Comments

Best Practices

How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase? I have an answer! With the help of #MEAction, I led a group … Continue reading

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

RFA Ticker, 2/6/17

I have no words this week, friends. I’m tracking the numbers because that is all I can do. One announcement: The NIH Clinical Care Center study of post-infectious ME/CFS is now recruiting participants. You can see the flyer here, and … Continue reading

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

CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , , , | 20 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

Comment by Terri Wilder, 1/12/17

Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. Good Afternoon- My name is Terri Wilder and I’m a person living with ME. … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , | 26 Comments