NIH Request for Research Topics by May 16

[Rustsmith]

The US National Institute of Health has requested input on suggested areas of research associated with RLS. The comments received will be considered in the allocation of research funds over the next five years.

You can find the instructions on how to submit your ideas at:
https://www.facebook.com/events/1207385015961359/

Suggestions must be received by May 8

Feel free to suggest whatever you want, but my personal recommendation is that they need to fund a study on the use of opiates for the treatment of RLS.

If it would be helpful, you can also get an idea of who to write your comments from the guidance at this website that explained what chronic pain patients who wished to write a constructive letter to the CDC about the recent opiate guidelines. http://nationalpainreport.com/tips-on-how-to-comment-to-the-cdc-on-opioid-guidelines-8828710.html

[Rustsmith]

There appears to be a typo in the instructions on how to comment on NIH research topics. Several of us have had our emails returned. I have asked the Foundation to verify the instructions for providing comments.

[ViewsAskew]

On the NIH page itself (the mistake)? The page itself is here: https://grants.nih.gov/grants/guide/not ... 6-312.html

[debbluebird]

I just looked at the page and there isn't a difference. So where do we send them ?

[debbluebird]

I just got a reply from M. Twery. She said to send the emails directly to her.

TweryM@nhlbi.nih.gov

[Rustsmith]

deb, I sent my comments to Michael Twery as you suggested and got a reply from him almost immediately. Thanks for digging into this.

[Rustsmith]

As I suspected, there was a email address in the NIH instructions.

The correct address is: rfi-sleepplan2016@collaboration.nhlbi.nih.gov

Comments can be sent to this address with "NOT-HL-16-312" in the subject line or they can be sent directly to Michael Twery, Director of the NIH Sleep Disorders Research group.

However, the deadline for submissions is this Sunday (May 8th).

[debbluebird]

I guess I missed that other email address.

[Rustsmith]

deb, you didn't miss anything. I heard back from Karla. She had forwarded my email to her contact that NIH. Her contact sent the new email address to Karla this morning.

[Rustsmith]

The date to respond to the NIH request has been extended to May 16, possibly due to the incorrect information on their web page on how to submit comments

[Joanie60]

I sent mine to: NCSDR-RFI2016@spmail.nih.gov per Facebook. Have not gotten it bounced back. Should I forward to Karla to make sure it gets to the right place?? And yes Steve, before I even read your post, I put in a plug for opiate studies!! Also genetic research (long term) because I can't help but hope for a cure

[Rustsmith]

Did you receive a response that said that your email had been received? If not, it may still be waiting in the "dead mail" list on their server. I received a bounce back, but it took two days before the system sent it back.

Rather than send it to Karla, try sending it to rfi-sleepplan2016@collaboration.nhlbi.nih.gov

If you do not get a confirmation email that it was received within an hour or two, then please send it to TweryM@nhlbi.nih.gov

[Joanie60]

Sent it to rfi-sleepplan about three hours ago. Will forward to TweryM.

Thanks Steve! Hope everyone will weigh in, requesting more clinical trials (esp for opiates!! Well, at least in my opinion!!) and further genetic research. I hardly dare for a "cure" but the hope keeps me going.

Joanie

[Rustsmith]

I just spoke with Karla Dzienkowski (Executive Director of RLS Foundation) on a different matter and she reported that she had received a call from Michael Twery that complemented us on our actions reporting the original error in the NIH instructions for submitting comments. Apparently he was impressed by our level of activism and passion for the subject. She also said that Dr Early has been pushing for a seat at the NIH table, so maybe we helped Dr Twery appreciate our combined interest.

Also as a reminder, if you have not already submitted your suggestions or comments for NIH research funding, you have until Next Monday (May 16).

[Joanie60]

Hey hey hey! Let's hear it for individuals making a difference! This damn syndrome can make me feel so powerless but your post just brightened my day Steve!! We DO have power, especially when we work together