Restless Legs Syndrome (RLS) Discussion Board

Rustsmith wrote:…I just wish that there was some way to get the message to a larger market audience so that we can start to counter some of the misinformation and foolishness being peddled by the major media outlets and the politicians. They make a BIG deal about opioid deaths, but completely ignore deaths due to alcohol and tobacco because those products pay big dollar taxes and advertising.

I’m not media savvy at all, but can’t help but think that someone here, or a family member or friend, knows how to navigate getting our message out there to a broader audience. Anyone? Maybe there are non-profits that help with these sorts of campaigns?

One of the Foundation board members is a PR expert and has been working with them. The problem is that the Foundation is a 501(c)3 charity and that type of non-profit is prohibited from getting involved in politics. So, they are doing what they can, like the advocacy program that we can all join, having the medical advisors publish the Mayo paper, the sponsoring the RLS registry at MassGeneral that will collect info that can be used at the CDC and sponsoring the research at NIH that lead to the adenosine paper.

Individually, we can join the advocacy project and join the registry. I decided to take it a step further and contact one of my local TV stations. I simply left a message on the website for their investigative reporter team that suggested that the opioid crisis was hurting local patients. I also mentioned that I would be happy to be interviewed. Since I have experience addressing large audiences, I was perfectly comfortable talking to the camera, which I understand would not be the case for many people. If that would make you nervous, write a letter to the editor of the paper or suggest that one of the paper's reporters come by for an interview. Their reporters are always looking for a new slant to ongoing news, as long as it doesn't conflict too much with any of their major advertiser's interests.

Final update on this thread. I met with the Nurse Practitioner at my new doctor's office for the second time today. He will be my primary care provider since he can write prescriptions for opioids. When I first met with him last month, I left a copy of the Mayo Clinic publication on using opioids for RLS. When I arrived at the office this morning, I first met with a young woman who is a nurse practitioner student. She asked what refills that I needed and I said that I needed a methadone refill for my RLS. She asked if I had recently left a paper on that subject, which I had. At that point she said that my new PCP had given it to her to read and that I was "her hero". It seems that she has mild RLS and really appreciated the opportunity to learn more about it. And obviously my new PCP had also taken the time to read the report since he required is student to read it.

So, sharing this type of literature with your PCP really can make a difference as long as they are willing to learn.

It is heartening to hear that your PCP and the nurse are understanding and willing.

Wow - wish I could clone them and their attitudes!

And, such good fortune for you. So glad to hear it.

Makes me happy to hear things like this...so Awesome!

Wonderful news.