Where I've been ...

[Lulu54]

First let me welcome everyone here who is new - I'm sorry I haven't been around to give you the personal attention every person new to the MS needs and deserves. I hope you will come around here often and let these experienced folks answer your questions and hold your hand as needed.

I have been scarce around here lately and want to let you know I'll be back soon, but not quite yet.  I am eyeball deep in reading MS research articles and working with a very dedicated team on a research grant proposal that centers on MS patients, doctors, caregivers and how we gather  our information and what we do with it..  I know that is horrible sentence structure but I hope you get the idea.

Are you familiar with PCORI?  It is a relatively new group in the US, funded by the government from insurance company profits, to look at new ways to do Patient Centered research and make some real change in how that research is made available and useful to patients, caregivers  and medical providers.  (called Stakeholders). A team of us have been steadily working on this grant proposal and are now facing the final deadline for submission this round.  

This process is intensive and we are now reviewing over 200 research articles that pertain to our topic.  That is a lot of reading for me when I can't keep my eyes open after a few pages of the newspaper.  :-)

Most of the regulars here know that when we log onto this MS forum, we don't just write a quick answer and then go away.  We read, we digest what your needs are, and try to respond in the best way that will help your particular needs.  At a minimum, when I check in here, I am going to be on the forum at least an hour, reviewing the recent activity (even though I might not always be giving a response you see). In another month I will have the time to stop again and spend some quality time here with all of you, but right now I have to focus on completing the grant proposal with this team.   I have been missing interacting with you,  but this grant proposal is the first priority.

I encourage all of you to visit the PCORI site and understand this change in research direction  and how you might become involved.  PCORI is  looking for research topic suggestions if you have something you would like looked at in depth, and they are also recruiting stakeholders to be trained as grant reviewers.  There is even a process where patients who have an interest in research will be paired with researchers to work on a topic specific to that patient's interests.  

You can find these bits of information at   pcori.org

This page has links to all the different ways as a stakeholder you can be involved in this is you are interested -
http://www.pcori.org/get-involved/

Until I get back here full-time, feel free to drop me a PM note and I will get back to you eventually.  I'm missing all of you - keep up the great job of supporting each other.  

hugs to all,
Laura

[Lulu54]

the reading is interesting but tedious.  I have been reading the batch on support for people with MS - and I  find myself rolling my eyes a lot. They are finding out such things as Quality of life (QOL) depends on support systems, the degree of your MS and of all things ... financial security.   Really?  (insert sarcasm here!)

Fortunately we are not looking at this angle but we still have to read the literature to find relevant studies.  

I did read a good one today about MS QOL and how to be proactive and doctors/medical folks need to find ways to support and promote activies and situations that improve QOL.  Most of the studies just talk about problems that exist but offer few suggestions for improvements.

back to reading,
L  

[debgen]

Hi Lu,
It is great to hear from you and all you are doing!

As always, I really appreciate all you do for us. Keep up the good work, it is very appreciated :)

Hugs,
Deb

[supermum_ms]

Lulu this is soooooo up my alley, I worked in reseach for nearly a decade hmmmm I wonder if they could use someone from my side of the world?

Keep up the good work, hugs!

missing you............JJ

[Daniellecd85]

I just wanted to say thank you. I'm new to this site and I'm not even sure I have ms, but everyone on here has been so helpful and seems to really care. So thank you to everyone for your time and support.

[anon07072023]

Good luck with your literature review and getting the proposal in on time.  I hope your research group is awarded the grant.  It sounds like important research.

I worked with a small research group on a large multi-year grant from the Nat'l Science Foundation (NSF) on short-fuse weather event warnings for flash floods & tornadoes.  We worked with the National Weather Service & NOAA. It was really interesting work.    

[HVAC]

Good for you. Bravo.

Alex

[sllowe]

Thank you Laura. You keep hunkered down, all are taking good care of each other here.

I'll be sure to check out the links.
-shell

[PastorDan]

LauraLu, you have been a Godsend to me and many others through the past several years as I've been wandering through the maze that is modern medicine.  May God continue to bless you and yours, as well as bring much fruit from your ongoing efforts.