Category Archives: understanding MS symptoms

MS Medications, MS research, MS treatment, Multiple Sclerosis, patient centered healthcare, Patientslikeme.com, Uncategorized, understanding MS symptoms

Days of Miracle and Wonder in Patient Power

Patients like me was listed as one of the websites allowing patients to run informal trials on treatments (awesome to see the power of this site recognized!).  On the plus side, it is incredibly empowering.  However, the flip side is patients in clinical trials may use sites like this one to figure out they are in a control group and modify their treatment or drop out of the trial.  After all, who would willingly let their condition progress for the sake of a trial’s control group numbers?

An additional advantage of this spread of social networks tracking medical treatments and conditions is the earlier release of at least anecdotal evidence from those in the trials who are publicly tracking their condition.  I think of the information from posters on patientslikeme.com talking about Campath before the trials’ results were published.  By the time of publication, many following the patients in the trials had a good feel for the likely results.  Patientslikeme vastly shortened the dissemination time for results.  This model has the potential to drastically shorten the time between discovery of treatments and their use amongst the patient population.

The question which remains is what to do with the danger resulting from the removal of survey/testing methodology.  Will most patients understand the implications of non-response?  What does it mean when 20 people post about starting a therapy and only 2 or 3 chart it for years?  Did the others stop and why?  Are the two people in remission a sign the treatment could work, or is 10% the number of people likely to have a spontaneous remission without treatment?

How many of us will know enough to ask these questions before we ask for the treatment based on what we read?  We patients and our loved ones are desperate.

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Potential upticks in patient power have been happening across many fronts.  Last month I ran across a story from the U.K. where there was a proposal for drug companies to compensate patients if their treatments failed. http://multiple-sclerosis-research.blogspot.com/2014/06/will-pharma-compensate-if-their-drugs.html

On the idea of repayment if a drug fails, I think there are numerous issues with this in MS. How will we measure failure: new lesions, brain shrinkage, worsened quality of life, greater effective disability score, etc.? I ask this in all seriousness as I work with Patientslikeme.com to develop better measures for patients for tracking disease progression across a variety of medical conditions. We run into problems trying to develop questions and measures to accurately assess health versus illness.  Until we can define success and failure, I do not know how we could punish/fine/sue those who make an ineffective treatment.  This completely ignores the possible disincentive to create new treatments.

I saw this study a while back on cost effectiveness of DMTs in the United States (http://www.ncbi.nlm.nih.gov/pubmed/21775734), and the conclusion was DMTs in the U.S. are not cost effective by normal measures applied to our treatment of other chronic conditions. However, if we could get them marked down 2/3 to the cost level seen in the U.K. then the costs come in line with other chronic health condition treatments.  The temptation would be for all the patients who feel their drug is not working to seek repayment, and I can see and understand patients desire for “justice” in this as a way to bring the costs down.  However, we simply do not have the means to measure success, and attempts to punish “failures” could lead to worse outcomes for patients as a population.  .

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While I understand the frustration and annoyance with the pace of progress getting new treatments to patients, I think we patients need to be cautious in our use of our new market power.  While we have the ability to disseminate news and organize like never before, we need to be aware of the limits of our imperfect knowledge.  Perhaps the hardest part of this increase in patient power will be the self control to step back and look at progress from beyond just our personal benefit angle.  In research, a negative result is informative.  For an individual, a negative result can seem and even be, terrible.  To be successful, patient oriented research may require a selfless motivation foreign to most economic theory.

Indeed, “these are the days of miracle and wonder” when it comes to patient knowledge and power to effect change.  However, there may still be long distance charges to find and spread “truth.”

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Animaniacs, foster care, Multiple Sclerosis, psychological impact of adoption, symptoms, understanding MS symptoms, word search

When Words Fail

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One of the most frustrating changes in my personality brought on by MS has been my frustration with my lack of confidence in dealing with emotionally charged situations in conversation.  For years, I know I’ve frustrated my wife by staying quiet in arguments saying only I need more timing to get the words for my emotions correct.  I’ve long played wheel of fortune trying to get the words in my head out of my mouth.  Heck, I’ve spent 5 minutes trying to get my wife’s name out in a conversation at work.  When this is added to a pressure for an immediate response, the wrong words come out.  Knowing this going in to situations, I’ve come to trust written modes of conversations more.
I ran across a situation this week where this lack of desire to speak to a problem ran afoul of a time ripe for misunderstanding.  In trying to explain why a date was no good for my family, I pissed off my mom.  I don’t begrudge her anger and frustration at us being unable to come on a particular day.  To make matters worse, in hearing her frustration, it became clear how little of the impact of my MS is projected in other matters.  
How can I project out how difficult it is for me to take care of my kids by myself at home, much less on the road?  I can tell people how J buttons my shirts so I can get to work on time.  I can tell people I feel more pain.  I can even make the point I keep massive numbers of dates and tasks on a calendars at work, but I trust J to make and keep our home schedule because my mind simply can’t track that much any more.  Ultimately though, I can’t convey how much I have to rely on J.  This weekend with J having the flu and K sick has certainly brought this need in view.  With all my mistakes, I have an Animaniacs’ quote stuck in my head, “Eeee Gad Brain.  What did you do that for?” Pinky and the Brain  Naturally my brain is stuck in the role of Pinky.
For a while I wished people close to me could understand what having my MS is like. Then I realized the only way they could would be to live it, and why would I wish this upon those about whom I care? No, the only people I might wish this upon are people for whom I don’t care. If I really don’t care about them, why bother to wish ill for them?
No, I’ve come back to the ultimately I am as alone in my experiences as I am in my dreams. Sometimes I am lucky enough to find someone to share parts, and these parts are the better for having been shared. What more could I really want?
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On the fostering front, I was at a presentation this weekend talking about how adopted children always come back to wanting to know more about their biological family.  The timing was remarkable when I got home and A was talking about sitting in traffic with K, and her sister.  When I asked her about her “sister” and who she was, A was very no committal, almost as if she was scared to talk about her.  I asked if she was nice to K too like she was, and A was quick to grab at the olive branch, and she beamed when I said “She probably gets the caring from you.”
A week after talking about O’s alien parents, the point of the talk about how their origins always being in our kids’ minds seemed spot on target. 
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