A thought about MS research

[squinun]

Whenever I read up on studies and research conducted on MS, I read things like "in a study of 200 patients"..."in a study conducted between 171 males and 191 females with MS"..."in a recent study involving 372 MS patients".......

Why cant more research be done involving over 5,000 patients (or a relatively large group)? Surely you wont get any definitive results with a few hundred people, I'm sure of this. I'm also sure that the problem is funding, and if this is so, protests should be made by patients into where the current research funding goes into.

I'm pretty sure that MS patients would first and foremost want research conducted into meds and treatments that halt, reverse and treat symptoms of different severities. I'm also pretty sure that MS patients will also want  research into what causes MS in the first place. Like I said, a few hundred people will not give you any insight.

I am of the firm belief that it is NOT the medical authorities who should dictate where the research goes into.

I may be totally out of line by saying all of the above, and if I am then please feel free to tell me (but please - without insulting me), so that I know if I am thinking along the right lines or not.
Thanks. Sorry if I disturbed anyone's thoughts.

[Lulu54]

Bob ,gave you the good reasons why these studies aren't larger.  There is also trouble with getting participants in just about every trial done - there are qualifying factors that must be met. Trials take time from the patients and resources to make multiple visits to the study site.  Rarely is a participant paid for their time, though the drugs and appointment times are always free.

The Consortium for MS Centers has on their site the links to NARCOMS, which is a worldwide  MS patient registery.  They do twice yearly surveys asking patients to update information.  IT takes 20-30 minutes to complete but well worth it.

You can see where the data is being used and the studies that come out of the information gleaned . There are over 35,000 participants, world wide.

Any one who is interested in contributing can sign up at

http://narcoms.org/

best, Lulu

[Deb61]

You know, I think you have a point.  I do think that some of the research questions could and should come from MS patients themselves.  People living with the disease have first-hand experience with MS.  They usually interact with others with MS and sometimes have family with MS and have a wealth of information as to how the disease behaves.  People with MS also know their environmental histories and compare their experiences with others.  In the least, I think researchers should poll or send widespread questionnaires out to MS patients.  I know that there are MS national and even international databases in place, but what I'm talking about is not a database.  I'm thinking of something from the end of developing the focus questions from people with MS themselves.  

I do think that the greatest amount of research should come from the scientists, though, because they have a wealth of knowledge as to what has already been done to springboard off of other findings and have the scientific experience and expertise that regular people don't have.  

An interesting question, I think, would be to poll/ask people here on this forum to see if they could come up with a research question for researchers.  

I have a lot of questions regarding migraine headaches.  There's been a few studies in regards to migraines and MS; however, it doesn't answer the basic fundamental questions regarding migraines.  Because 58% of the people with MS have migraine headaches, there seems to be some connection there.  Plus, people with migraines in a study seem to go on to develop MS later.  And most importantly, migraines are a differential when considering a diagnosis of MS.

My questions for researchers:
Do migraine headaches without auras cause white matter lesions before the age of 60?  Research has proven that migraines with auras in people over 60 are related to an increase probablity in developing white matter lesions.  It is also found that there is no connection with people who have these white mater lesions developed in people over 60 with migraines (w/auras) in cognitive functioning in that study.

Are migraine headaches/cluster headaches related to formation of new lesions in people with MS?  If so, it could give neurologist a way of determining if a patient's disease may be progressing.

It would be interesting if our forum could come up with research questions  . . .  

[candy158]

I totally agree with you BOb.  My hubby says the same things all the time.  Especially about the newest surgery and the damages it has done on some patients, yes it might have helped some, buit most people are worse off that when they begun.  So, tests, results, should be done over and over again, before they start using us a guinea pigs.  

So, good for you on starting this thread, I`m sure you will get alot of different feelings, and for that, I`m sure.

take care, and thanks for all you support and input on this site,
Candy 158

[COBOB]

They have done some large 5000/10000 sample studies, but they tend to be blood or CSF studies where the samples can be shipped.  Finding 500 people within an area and being able to establish a statistical cohort is pretty tough and setting up a multi-center study would be a huge challenge.    

The problem is that in large groups, there are more variables and it becomes harder to find the meaningful data in the excess of meaningless data.  

Bob