Friday, March 9, 2007

And Just So You Don't Think I'm Blowing Smoke Up Your...Skirt...!

     I shouldn't really ask anyone to do something that I am not willing to do's MY letter back to Ms. Annie Hammel of the NMSS (and if you've just joined this current broadcast of "BrainCheese Takes On MS", please read a few of the more recent postings this week to catch up!):

Dear Ms. Hammel,

      I appreciate your personal response to my email earlier this week, which was originally sent to Ms. Lindly.  It appears the reason my email was forwarded to you for a reply may have been twofold:  you were the person researching blogs on the Internet and you were also designated to forward an apology from Ms. Nelson.  I must admit hearing now from yet a third party of the NMSS is/was a bit confusing, however.
     I am relieved to hear the NMSS has been "researching" the Internet and the various potential this communication source can offer to people living with MS.  It is important to recognize the Internet has become the PRIMARY communication tool among so many of us living with MS.  We find ourselves in multiple chat rooms, reading and commenting on multiple blogs/journals, establishing email "chains" among ourselves, and attempting to find the most up to date research and information that is available about the disease and its treatment options.  This "tool" has become so predominate in our lives for many reasons:  For some, it is simply a mobility issue and an inability to establish face to face contact with each other.  For others, it is the extreme ease of use.  And still for others, it is the only source available to research ACCURATE, real time, true and honest information spoken from the perspective of an individual dealing with the many aspects of living with MS.  I will admit the latter two rationales of the previous sentence are my personal reasons for relying on the Internet so heavily.  But at times, I am often disappointed in what information is available to me in a concise, well-formatted presentation.
     At the risk of sounding disappointed or "rude", I will tell you the NMSS website itself is quite difficult for me to navigate, specifically the local Greater Washington Chapter site (which appears to be formatted to fit the NMSS layout).  Pages load very slowly, I often find I cannot simply return to a previous page with ease, I am never certain if I should be looking under "events", the "calendar", or "programs" to find a specific piece of information, and so on.  The search feature is cumbersome and, once clicking a specific search return, I cannot go directly back to the original search page and I have to start all over again with the search.  If the pages were more "user friendly", I might be inclined to USE them more often.  These are issues that could be remedied by a skilled ITS person(s) and web designer.
     Information I have found extremely difficult to access via the Internet has been regarding the many drug therapies available to those of us with MS. Certainly, I am always directed specifically to the pharmaceutical websites when researching a "brand name" medication, which may be helpful to some.  It is NOT assistive to me.  Because I work in the medical/psychiatric field, I am all too familiar with how this information is compiled and distributed and it is ALWAYS in a biased manner designed to SELL the drug company's product.  I have no interest in seeing or hearing smiling testimonials of only the "positive" effects of certain medications.  And possibly, this is the only information the pharma companies have to dispense because of the nature of how side effects/adverse effects of medications are reported POST drug study.  Unless a physician personally takes the time to report an adverse effect, it is never taken into consideration by these companies...and it is only RESEARCHED and THEN possibly listed as an outcome when there is a significant percentage of responses from physicians (or a risk reported that might lead to serious death or financial loss via law suit, such as with Tysabri).
     I proposed on my own blog the idea of having a site set up as a "clearinghouse" of sorts where patients with MS could document their personal experiences with the extremely costly and all too often and even debilitating effects the MS treatments pose.  I am quite certain this would be met with serious resistance from the pharmaceutical industry and I believe this is why no one has ever approached this idea.  But speaking as someone with MS, this idea SHOULD be a priority.  We are, after all, the people who have the BEST experience and ability to report these effects to one another because our physicians don't even have a means of accessing a data base without direct contact with the drug companies/drug study results/pharmaceutical reps.  Because we/I have MS, it should not be assumed my intelligence and ability to discern fact from fiction in information useful to me is inadequate.  I am deeply concerned the financial profits of these drugs are outweighing the honest presentation of the drug's effects.  This is a MAJOR area where the NMSS could become a front runner in providing unbiased, experientially based information to the MS community.
     Another personal experience I have had with the NMSS (somewhat unrelated to the use of the Internet) is the notion I generally only hear directly from the society when there is a fund drive occurring.  I DO give to my local charities, but I find it odd I am specifically contacted to donate money to a charity I would hope to receive direct benefit from, but yet a charity who remains somewhat "dormant" in my life, except for requests of money.  This is just added as a personal observation and "food for thought" in feedback form.
     I frequently "lament" on my blog in a humorous manner about the wonders of the marketing department for Breast Cancer Awareness and what a stark contrast it is to the "marketing" for Multiple Sclerosis Awareness.  I am also amazed at the educational programs available to this particular cancer community and the various sources they utilize to disseminate information.  They have managed to rally an entire population around their cause by using smart marketing tactics.  By contrast at least in my area of the country, the only time one hears about MS is in the spring when yet another fund-raiser event approaches:  The MS Walk.  It would seem a more aggressive approach to MS Awareness might be the key to rallying the masses and not just when requesting donations.  Establishing educational programs in schools, within large businesses, and even major chain stores might be a place to start...after all, EVERYONE with MS eventually uses a local pharmacy for medications!
     My personal "fight" with MS awareness is based on the premise no one will listen to me unless I give them a reason to and I GIVE them something useful in return.  Whether that is creating a forum whereby people feel included, feel a sense of altruistic responsibility, or feel they are making a difference.  These are the reasons I take the time almost daily to write my blog, BRAINCHEESE.  But in doing so, I must present information in honest and believable terms, the good and the bad, and NOT just the smiling, persevering "face of MS".  This is the only way in which to be authentic and inspire people to listen and/or take action.
     We as a community (those of us with MS) have remained complacent and silent far too long.  Before I was diagnosed with MS, I had only read about it in medical/nursing education classes.  I was never exposed to MS and never saw much in the community that attracted my attention to LEARN more about it.  Now that I am diagnosed with the disease, I have a full understanding WHY the community at large is not more supportive or involved in supporting the needs of someone with MS:  The community is not educated, motivated, or feeling a sense that they can assist the cause in meaningful ways.  I would hope this email to you might be used in a constructive manner to assist in focusing the NMSS to work toward these goals of education, motivation, and involvement.
Thank you for your time.
Linda (Last name not important)
Seattle, WA


lglbgl2003 said...

Linda, I agree (with the exception of your Tysabri comment) Re: Tysabri, you stated, "Unless a physician personally takes the time to report an adverse effect, it is never taken into consideration by these companies...and it is only RESEARCHED and THEN possibly listed as an outcome when there is a significant percentage of responses from physicians...that might lead to serious death or financial loss via law suit, such as with Tysabri)."  This is not true & unfair to single out Tysabri [even though I know you were on Tysabri for a brief time].  The 2 PML cases that turned up in the combo with Avonex trial pts show up out of the blue AFTER the mfgs had done 1000s of studies about what adverse effects there could be, & PML had NEVER even been on the list.  I am NO fan of Biogen, but no one could draw conclusions at that time as to why PML happened. There were 10s of 1000s of pts queuing up to take Tysabri but decided they couldn’t say ‘take it and we will figure it out later’. They wanted to protect the pts & ultimately protect the drug because the drug can save the lives. So they voluntarily removed it from the market until an EXHAUSTIVE search & collection of safety data had been accumulated over the following 15 MONTHS which could be submitted to the FDA for final review-and which ultimately revealed NO new cases of PML other than the 2 previously mentioned trial pts and the 1 Crohn's pt with an already severely compromised immune system.
  Re: the NMSS-while I applaud the works of the various & unbiased neuros that donate their time & expertise to the NMSS, & 'some' of the works of its local chapters, it has been my own per. experience that they are good at promoting their OWN agenda, take credit for ideas that were NOT their own related to various MS topics, & they give themselves undeserved accolades where NONE are due.  Their MS patient advocacy status, imho, is woefully pathetic. E'nuff said!  B

lglbgl2003 said...

Hey - that cut off - lol -  I ended my comment with "Be well my friend! Lauren :) "

harkoo said...

I receive disability for my ms and it is my understanding that i am not allowed to give to any charities whatsoever by the instructions of my attorney and tax accountant.  This makes me very sad.   I receive alot of requests from the MS Society for donations, but do not feel able to send them money as i might be at risk of losing benefits.   I have written to them--state and national and have not used the Society for many years but continue to get requests for money from them.   I am wondering if other people with ms are in this quandry?   I certainly would help them if i could or if i even had used them to help me adapt to the world in a w/c.   I used other agencies to help me get loans for adaptive equipment on the car i bought, to find an instructor to teach me new driving skills, to learn about disability law and how to learn to live on diminished finances.