Nov 152004
 

I decided to break this response to Christine’s comment on my post into two parts. The next post will deal more specifically with the glyconutrients which I will post tomorrow. This is my open letter to Christine since I have no other means in which to respond to you:

Christine:
Per your very first two sentences “My niece was recently diagnosed with MS so I am researching on the web. I am convinced that she needs to try glyconutrients and was looking for the right information to give her which is how I came across your blog.” which gives me quite a bit of concern. While I am sure you are very concerned about your niece and her future with Multiple Sclerosis if there is ever a time to offer treatment advice (and I might suggest that there is never am appropriate time for extended family and friends) it certainly isn’t shortly after diagnosis. Take it from someone who was there and knows this is a VERY difficult time with a lot to ponder and think about (and worry about) and is not appropriate for other people (extended family and friends included) to offer unsolicited treatment advice. I would urge you to to read my post “How to Help Someone with MS” as I would consider it a good overview of how to handle the situation. Intentionally excluded was offering advice – your role should be one of support and encouragement something she will certainly need a lot of. Feel free to have her drop me an email (or you can to) (or my wife if she wants talk to a female very familiar with the disease) if she’d just like to have a fellow MS’er to talk to. I started this blog about a year after my diagnosis so it doesn’t really cover those initial feelings/worries/etc. Of course I am sure Katja (She has certainly had it longer than me and definately would offer a more mature viewpoint) and Becca (who is on the just diagnosed side and seems to be taking it a lot better that I did) would be more than happy to talk to her too. Give her my best. She certainly just got forced into a community no one ever wants to be in. 🙁

  5 Responses to “Response to Christine – Part 1”

  1. I am glad you are responding to this, Erik. I highly doubt that there is a conspiracy amongst doctors, drug companies, researchers, the MS Society, etc., etc., etc., to keep helpful treatments out of the hands of MS patients. If nothing else, we know that the drug companies would be all over this like white on rice if it were effective. If I had more time, I would go over to the medical library at MUSC to debunk this myself, but it is nearing the end of the semester and I am swamped. Setting snake oil cures aside for a moment, I am always willing to chat with anyone about MS, especially about the difficult process of choosing a treatment. In the end, I would tell Christine that it’s her niece’s body and she should do with it what she pleases–just don’t tell the rest of us that we’re wrong on the basis of your detailed “Internet research.”

  2. The internet is PACKED full of Snake Oil and misinformation. Too much crap is easily readable while the nuggets of truth are a tough nut to crack.

  3. Erik’s got the right idea – immediately after diagnosis is NOT the time to bombard your loved one with theories about what she did wrong and how to fix it. MS is a long term, chronic illness. What you do in the first days, weeks, months after diagnosis is not going to make that big a difference, so take your time, don’t jump on any bandwagons. Unless, of course, frenetic activity is the only way you can cope.

    That said, here are a few thoughts about Christine’s “research”:

    I recommend QuackWatch as an adjunct to researching any non-traditional therapies. I also suggest taking a look at How A Scientist Thinks at Multiple Sclerosis Sucks.

    Katja

  4. From Mannatech’s FAQ:

    What do I take for a particular illness?
    Our products are nutritional supplements–not drugs. They are not represented as a treatment for any disease. They are designed to help promote good health. If you are sick, consult your physician about the use of these products.

    I guess Steve the Pimp and Christine the Shill didn’t get the memo…

  5. I agree…right after being DX’d is not the time for reproachments.

    I’m also here, should Christine wish to talk (I’ve had MS and trigeminal neuralgia…a not fun mix, let me tell you….for eight years).

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