Holidays, Diets and MS!

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That’s quite the combination to even think about at the same time but I want you to consider helping us think about diet and multiple sclerosis.  The patient-led initiative, iConquerMS™ needs your input on diet and how it might affect your life with MS.  We are surveying members for their input on what might be important to look at and I invite you to join us.  To take the survey you will have to register at the site, but I promise that is simple.  The survey will remain open until January 3.

Here’s is the official invitation to participate  and more of an explanation – I hope it will spark your interest and you will help us create this important look at diet.  Wishing you well, Laura

 

We are writing to share some exciting news about an iConquerMS™ research study that’s being developed. We also want to ask for your input on this study.

Background: Our initial award from PCORI to create iConquerMS™ included funding to work with Dr. Carolyn Schwartz, an expert in the area of patient-reported outcomes research. We decided to use these funds to conduct a research study on a topic that has been directly suggested by iConquerMS™ members.

Looking across all of the research questions that have been submitted to iConquerMS™, one of the most common themes is the use of complementary and alternative medicine (CAM) and dietary strategies in MS. For instance, people with MS have asked about yoga, massage, meditation, the Paleo diet, vitamin D, and medical marijuana, to name a few. They’re curious about how many people have tried these approaches and what their experiences have been like. They’re also interested in sharing their own knowledge with others.

We would therefore like to conduct a study that gives people with MS helpful information about the use of CAM therapies and diet. The results of this study could also be used to design later studies on these topics.

Because this is an iConquerMS™ study and you are an iConquerMS™ member, you can get involved in many ways. For instance, you can help design the study to make sure that the results will be useful to you and others with MS. You can participate in the study once it’s developed. Once the study is complete, you can have access to the data and findings to explore as you like.

As a first step in designing this study, we need some input from you: What information do you want to have when considering a new CAM therapy or diet? Which therapies and diets are you interested in trying and which ones have you used already?

We’ve posted a survey on iConquerMS™ to collect this initial input. To fill it out, follow these three simple steps:

  1. Go to iConquerMS.org and log in at the top of the page. (If you’ve forgotten your password, click here and fill in your email address.)  NOTE from Me- if you haven’t already joined, you will need to create your account before you can complete the Diet/CAM survey
  2. On your iConquerMS™ dashboard, find the “My Research Surveys” area and locate the survey named “Diet/CAM Study – Initial Input Survey” in the “New” column.
  3. Click on the link for the survey, fill it out, and submit. It’s a short survey which should only take a few minutes to complete.

Please send us your responses on or before January 3. Once we have this input, we’ll work with Dr. Schwartz to develop a research proposal and will share this with you as well. The actual study will take place in early 2016.

If you have any questions or need help logging in, just send us an email atiConquerMS@acceleratedcure.org.

We look forward to working with you to develop and conduct the first iConquerMS™ research study!

Happy Holidays!
The iConquerMS™ Team

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