Occupy ME blog post: The NIH Pilot Program: Wait and See

[Andy]

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 already has a de facto plan for ME, and more than a few people with ME will die before that plan produces meaningful results.

What is the plan? NIH is going to wait for the new Collaborative Research Centers to lead to more research proposals, rather than investing money to stimulate that research now. NIH has no intention of addressing the need for a consensus case definition now, and has chosen an approach that could take a decade or more.

http://occupyme.net/2018/05/21/the-nih-pilot-program-wait-and-see/

 

[Sunshine3]

How depressing...

 

[Cinders66]

They can stick ideas of wait and see

Thanks to these advocates, we simply can't accept this. This is not the way to make up for decades of neglect, you don't turn up to a starving town and offer the occupants seed, Walter asks us to stay the course - does he have any grasp of what surviving onr year of severe ME entails?

Similar situation to uk, we are currently waiting it seems on September- another year passing, to be told of the new plan from the MRC, attempt 4 if you count the setting up of the expert group, the delayed RFA, failed MEGA attempt and now ..., who knows.

It's frustrating because as the letter to nih shows much could be done with political will and funding. Especially in the US , you've got good researchers , more than 3 centres were worthy of funds. You aren't crippled by lack of interest but lack of funds, but even then you're still leading the way across the globe.. sigh

 

[James]

Almost as if they are waiting for certain people retiring before there can be a policy change.

 

[Andy]

Lol, look who suggested a "Fatigue Conference" to attract researchers to ME/CFS research in the comments

 

[ballard]

Thanks to Jennie for another brilliant article! Looking forward to part two where she will talk about what we can do about the pace of ME/CFS research at the NIH. In the meantime, I just keep drawing pictures....sigh. 28 years and counting.

 

[Samuel]

@ballard i hope meaction knows about your graphics.

imagine that one all over the web and social media.

 

[Sunshine3]

@JenB now that picture says it all....fair play to you @ballard. The truth ain't pretty.