Sharon and Harry,
That is so odd. I used almost the exact same analogy when submitting the additional research I had done recently to the NMSS and my PCP (i.e. the puzzle analogy, and how now it might be time to put it all together and step back to see what we've got.)
Harry, I personally say "right on" with your statement about "I would think that symptom relief and general well being without disease progression is the prime goal...."
I'm not against finding a cure, but I totally agree that in the meantime, we might need to dedicate a few more resources toward finding better treatments, too. I'm not saying they aren't trying, but why are so many options still being ignored?
That was the ONLY thing that bothered me about the response I got from the NMSS....the "narrow it down" sentiment. Narrow it down? That's hard to do. I took almost all of the prevailing theories that the NMSS funded researchers had hypothesized about and had published their recent findings on, and compared their individual theories with a drug that had either already been proven to provide, or showed indication would provide, the beneficial effects they were looking for. Now, let's narrow it down further? Why?
I'm sorry, but in my mind, I want to take the one medication (or the fewest combination of medications) possible that will likely improve my condition in more ways than just one.
Change the immune system from a predominantly pro-inflammatory TH1 to an anti-inflammatory TH2 in MS? Ok. Maintain sodium density, regulate ion channels and MHCII, decrease Ca2 influx, etc. etc. Ok.....let's put them all together and see what drug(s) we might ALREADY have that we can test that might help ALL or most of those things at the same time! And I did that! To my own shock!
So, we're out here. Working away. It's just hard to get noticed. I'll find my "champion" in the research field, yet. I'm not stopping until I do, and I only just got started. So far, none of the researchers who have looked at my information has said it has been flawed at all.
I will say, though, that even with the response from the NMSS, I do understand what they probably meant, due to the fact that with the prevailing strategies that are employed by researchers today, to pursuade for a clinical trial to be designed by one of those researchers, the material has to be narrowed down. And I will say the NMSS showed signs of trying to think outside the box by encouraging me to forge on and try to get the researchers in the field to engage in these important questions, etc., as I had proposed. I take that as a sign for any and all of us to do the same.
And that's what I'm doing. Perhaps the NMSS needs our help in putting a little pressure....just a little......on our neuros, etc., to think outside the box? If we are complacent and just accept what we are told and are recommended without questioning things in detail, how will we ever effectuate some active change in MS research?
Just some thoughts. I may be heading down the wrong road with my compilation, and right now, its effectiveness is anecdotal (i.e. me, myself and I), but I would think anything is a start. Where's the harm in looking at it closer or trying it? I could see if something is just thrown out there without adequate years of lab testing, etc., or sufficient substantiation of possible efficacy, and that's not what I'm suggesting. I did also provide substantial justification, at least, for why my suggestion might just work for MS. Some of these other theories or medications that come with substantive research, should be seriously looked at, also, in my opinion. No matter how "outside the box" they appear.
And besides, just how many "forms" of MS might we be looking at anyway? A lot of research is showing that there are different patterns of MS, and there won't even be a "one size fits all" type of treatment anyway.
And yes, I also agree with your statement, Sharon, about coming across information that is potentially connected to solving the MS puzzle totally outside of MS research. I found the same.
And I also found affective disorders and multiple sclerosis to be extremely similar in many ways. At times I'd begin to wonder just what multiple sclerosis really was (if that makes any sense), and if in finding a treatment for one, you might very likely find a crossover treatment for at least some forms of the other. And isn't that what IS being speculated on quite often? (As you noted, Sharon.)
I realize this isn't always a popular sentiment sometimes in some circles, but a "team" approach as Sharon has suggested might just be what IS needed right now in MS research.
Perhaps the fact that we all are beginning to expect more accountability for MS research might just get things really moving again. Wouldn't that be wonderful? So many people suffer, and it truly breaks my heart. I fear and feel more for others than for myself.