Ask the Right Question

So often the hardest part of any endeavor to learn is knowing what to ask.  We all look for the readily quantifiable to give us the answer in black and white.  We hate basing our decisions on subjective findings. Did the student get 90% correct?  As a teacher, the multiple choice test gives the easiest answer.  However, the essay which is harder to grade may in many cases, give a truer measure of the students knowledge.   
This week I was at a dinner for MS patients sponsored indirectly by a pharmaceutical company through their patient outreach program.  I tried to get the neurologist speaker to explain what the long term benefits of taking the front line MS drugs were for patients, but she stuck by the reduction in flares line.  I know the standard for assessing the success of the disease modifying drugs (DMD) which is a reduction in flares/exacerbations.  
My question is as patients, why should we care to the tune of thousands of dollars a year about what an MRI says the disease is doing to us? There was a 10 year study’s results released two days after the dinner which said the level of disability for patients on the front line MS drugs was not significantly different from those who took no DMD.  Note, the front line drugs studied did not include Copaxone. 
All of this leads me to two conclusions. 
First, isn’t the real question we want answered, “What can I do to slow/stop the progression of symptoms?” rather than what can I do to prevent flares?  As a patient, I care far more about my ability to see, swallow, and walk than I do about what a picture of my brain looks like.  I understand lesions showing up on an MRI allow us a clearly measurable level of success for DMD approval, but it doesn’t seem to be a meaningful measurable.  The correlation between lesions and disability isn’t strong.
Second, if one accepts the results of this study, should not a bigger push be made for patients to quickly move to the second level drugs like Tysabri which have evidence of halting symptom progression?  Yes, Tysabri has risks for those who are JC+ like me, but for the half of patients who are JC-, why not start with the drug which works best?  For those who are JC+, how about giving the patients the information and options to make an informed decision?  I know J and my decision about which drug to take was always based on the give me 6 good years over 30 crappy ones premise. 
 (continue on next page)

On a positive note, it seems we have made progress in figuring out which patients may find some drugs ineffective. http://www.webmd.com/multiple-sclerosis/news/20100329/two-types-ms
These seem able to suggest some classes of MS treatment drugs will be ineffective for certain people.  Maybe once these people are removed from the base, the remaining will be those who will respond well to the front line drugs.  As it is, we should at least be able to prevent recommending patients take the drugs with the known bad/or not helpful reaction for their MS.
Finally, it should be noted none of these studies looked at the new oral pills which will probably take over most of the market due to patient convenience.  I just hope we measure their utility by looking at symptom progression rather than just the easy to quantify MRI results.
We need to ask the right questions.
 
Share

52 thoughts on “Ask the Right Question”

  1. It’s amazing to pay a quick visit this site and reading the views of all friends on the topic of this piece of writing, while I am also eager of getting familiarity.

    my web-site: iseekblog.com

  2. Fantastic goods from you, man. I have bear in mind your stuff prior to and you
    are simply extremely wonderful. I really like what you have obtained here, certainly
    like what you’re stating and the best way wherein you assert it. You’re making it
    enjoyable and you continue to care for to stay
    it sensible. I can’t wait to learn much more from you. This is actually a tremendous site.

    My web-site Nellie

  3. Hello there, just became aware of your blog through
    Google, and found that it’s really informative. I am going to watch out for brussels. I’ll be grateful if you continue this in future.

    A lot of people will be benefited from your writing.
    Cheers!

    Here is my weblog Alfred
    My web site :: Mckinley

  4. Quality posts is the key to attract the people to pay a quick visit
    the web page, that’s what this web site is providing.

    Here is my web-site: ibwww.org

  5. You really make it seem so easy with your presentation but I find this topic to be really
    something that I think I would never understand.

    It seems too complicated and extremely broad for me. I’m looking forward for your next post, I’ll try
    to get the hang of it!

    Here is my web-site … http://ibwww.org/instituto/user/profile.php?id=6422

  6. Very nice post. I just stumbled upon your weblog and wished to
    say that I’ve really enjoyed browsing your blog posts. After all I will be subscribing to your rss feed and I hope you write again soon!

    My blog voritos.com

  7. Wow that was strange. I just wrote an really long comment but
    after I clicked submit my comment didn’t appear. Grrrr… well I’m
    not writing all that over again. Regardless, just wanted to
    say wonderful blog!

    Feel free to visit my web page … Lsn2.me

  8. I’d like to thank you for the efforts you’ve put in pеnning this site.
    I’m hoping to see the same high-grade content by you later on as well. In fact, your creative writing abilities has inspired me to get my own, personal site now 😉

    Here is my blog post: quick cash

  9. I blog often and I seriously thank you for your content.
    The article has truly peaked my interest. I am going to book mark your blog and keep checking for new information about once a week.
    I subscribed to your RSS feed as well.

    My site; Hazel

  10. Usually I don’t read article on blogs, but I wish to say that this write-up very pressured me to check out and do so! Your writing taste has been surprised me. Thanks, very great post.

    my web blog: Stephania

  11. Hello therе, I founԁ yоur blog via Gοogle whilѕt looking
    fοr a comрaгablе subject, уοuг wеb
    site got herе up, it appeаrs great. I’ve bookmarked it in my google bookmarks.
    I’m no longег pοѕitiνe where уou аre getting youг
    info, hоweѵer good toρic. I needs to ѕpеnd
    some tіmе learning moгe οг workіng out more.
    Thаnκ yοu for great info I ωаѕ on
    thе lookout for thiѕ info fοr mу mission.

    Here is my webρagе :: fast payday loans
    My websitefast payday loans

  12. A fascinating discussion is definitely worth comment.
    There’s no doubt that that you ought to write more about this subject, it might not be a taboo matter but typically people do not discuss such issues. To the next! All the best!!
    Also visit my web page : Susan

  13. I don’t even know how I ended up here, but I thought this post was great. I don’t know who you
    are but definitely you are going to a famous
    blogger if you aren’t already 😉 Cheers!
    Feel free to visit my homepage : jacquesschneider.Webs.com

  14. I’m really enjoying the design and layout of your blog. It’s a very easy on the eyes which makes
    it much more pleasant for me to come here and visit more often.

    Did you hire out a designer to create your theme? Outstanding work!
    My website :: Lucila13.Wetpaint.Com

  15. Quality articles is the important to invite the visitors to go to see the site, that’s what this web site is providing.
    Stop by my web-site ; Sylvester

  16. Whats up very nice site!! Man .. Excellent .. Superb .
    . I will bookmark your blog and take the feeds additionally?
    I’m glad to seek out a lot of helpful info here within the put up, we need develop extra strategies in this regard, thanks for sharing. . . . . .
    Take a look at my web siteMarina

  17. I think this is one of the most significant info for me.
    And i’m glad reading your article. But wanna remark on some general things, The website style is wonderful, the articles is really excellent : D. Good job, cheers
    My blog : %WEBSITE

  18. Howdy! This article could not be written much better! Looking at this post reminds me of my
    previous roommate! He continually kept preaching about this.
    I am going to send this article to him. Fairly certain he will
    have a very good read. Thanks for sharing!
    Here is my site :: jacquesschneider.webs.com

  19. Great items from you, man. I have remember your stuff prior to and you are simply
    too great. I actually like what you’ve obtained here, certainly like what you’re stating and the best way by which you assert it.
    You’re making it entertaining and you still care for to stay it smart. I cant wait to learn far more from you. This is really a great site.
    Here is my web blog ; gather.com

  20. Good day! I know this is kinda off topic nevertheless I’d figured I’d ask.
    Would you be interested in trading links or maybe guest authoring a blog article or vice-versa?
    My site discusses a lot of the same subjects as yours
    and I think we could greatly benefit from each
    other. If you might be interested feel free to shoot me an e-mail.
    I look forward to hearing from you! Awesome blog by the way!
    My page Scalp med

  21. There are 2 methods I use to write. the first is to take the time to at least outline in my head the arc of what I am trying to say. I know where I want to start, because it’s the subject I am thinking about in the post. I know why I think these thoughts which is the body, and I know I want to end with either a conclusion matching my start or, as often happens, some thing totally new.

    Option 2 is the free flow writing. Just write. Don’t worry how it goes together as you can arrange your writing after it’s done like a jig saw puzzle. Then you can write an intro and a conclusion.

    Both approaches have worked for me. It all depends on how long I’ve worked with the subject. Good Luck.

  22. First off I would like to say great blog! I had a quick question in
    which I’d like to ask if you do not mind. I was interested to know how you center yourself and clear your thoughts before writing. I’ve had a tough time clearing my thoughts in
    getting my thoughts out there. I do take
    pleasure in writing however it just seems like the
    first 10 to 15 minutes are wasted just trying to figure out how to begin.
    Any suggestions or hints? Thank you!
    Here is my web page ; oposinet.es

  23. Thanκѕ for ѕharіng your info.
    I really apprecіatе yоur еfforts and I am waiting foг уour further post thanks оnсe аgain.
    Here is my blog post ; Freddy

  24. Ι don’t know whether it’s just me oг if еverybοdy еlse encountering iѕsues ωith yоur blog.
    It аρpears like some of the written teхt on your postѕ аre running off the screen.
    Ϲan someone else please comment аnd let
    me κnow if this is happening tο
    them as well? Τhіs might be a issuе ωith my web bгowser bеcause I’ve had this happen previously. Appreciate it
    Look into my webpage7 keto

  25. I’m not sure how this post ended up with the most hits or the most posts with links to weight loss plans. Did I do something different with this post?

    Sorry if I remove anyone’s real comments. I do in fact read and appreciate all of the replies.

  26. Gluten free, you are correct on the plain title and lack of graphics. Many of my titles are plain, and the posts are graphicly plane save for those about visual images. I just find myself thinking inless and less visibly oriented media. That’s actually the subject of one of the posts I’ve been working on looking at how MS and aging has made some types of thinking much harder for me. Thanks for the suggestions.

  27. From pictures of a human heartblog, that’s a cool page. My daughter was born with pulmonary atresia, after 4 heart surgeries, a stroke and drug addictions to get over, she’s come a heck of a long way. Since her Fontan (sp?), her O2 levels are consistently in the 98+ range resting compared with the lower 70’s prior to the surgery. At work I have a link to a page which explains the fontan with graphics, but I still think of it as changing her circulation from heart to lung to heart to body in a pattern of heart to lung to rest of body to heart, kind of like going from a figure 8 to circle pattern.

    What I can’t figure out is if that switch has the same problems inerant in cheap christmas lights versus expesive ones (figure 8 design allowing current to complete loop even if there is a break in the cord).

  28. I think that what you composed was very logical. However, consider this, suppose you typed a catchier title?
    I ain’t suggesting your content isn’t good, however what if you added a headline that makes people desire more?

    I mean “Ask the Right Question” is kinda plain. You ought to peek at Yahoo’s front page and watch how they write news titles to get people to open the links. You might add a video or a related pic or two to get people excited about what you’ve written.
    In my opinion, it might bring your posts a little bit more
    interesting.
    Stop by my blog ; gluten free diet foods

  29. My spouse and Ι stumblеԁ over herе
    bу a different wеb pаge and thought I
    mіght as ωell сheсk thingѕ out.
    I liκе what I see sο i am ϳust follоωing yοu.

    Lоok forωard to loοking аt your web
    page foг a ѕеcond time.
    Review my blog postHCG Diet Recipes

  30. What’s Taking place i’m new to this, I ѕtumblеԁ upon
    this I’ve discovered It absolutely useful and it has helped me out loads. I’m hoрing to contribute & аssist diffeгеnt
    cuѕtomers like its helρеԁ me.
    Gooԁ ϳob.
    Also visit my weblogPictures of the Human Heart

  31. Magnificent site. Plenty of useful information here. I’m sending it to a few pals ans also sharing in delicious. And of course, thank you on your effort!
    my siteacne problem

  32. howdy stranger, this is Jenelfchick from Immortal 🙂

    Before you left the game you asked that someone let you know when a release date was announced for MoP. September 25th is the date! if you have any questions just reply back here and I’ll see them, or you can email me @ jennyreigle@yahoo.com hope to see you in Pandaria 🙂

  33. The article you listed was on the same study I saw written up in the NY Times and on Patients Like Me. I still think we have asked many wrong questions. This post is mostly on the wrong questions when determining efficacy of treatment, but I still think we have to answer the question on is MS one disease or many with subgroups? The blood test link for me is encouraging because it gives a clue to this question.

  34. Ack, sorry. the link I had before was changed since I wrote the first part of this last week. I corrected the link. to webmd which has the same article I read last week.

    Thanks for catching the bad link

  35. This is a wonderful, timely post. I did see the article, and sent the link to my neurologist, who had agreed to accept my discontinuing the DMD injections last fall. And watching the orals for their own efficacy is also critical, as I believe they are designed along the same premise of linking the immune system to the central nervous system is the only avenue toward finding a cure. I am more in

Comments are closed.