GBS/CIDP Survey Results

    • Anonymous
      August 25, 2012 at 3:59 pm

      I have had over 350 completed responses to my survey into GBS & CIDP. I am now publishing my findings via my blog:

      http://mycidp.blogspot.com

      As I have gathered a significant amount of data, I will be publishing and commenting on the results over the coming weeks.

      A big thank you to all people who filled in the survey and if you have not. it is located at http://gbs-cidp.questionpro.com – I will leave it running until March 2013.

      Please review and comment on the findings. I hope they are of some use.

      Thanks Drew

    • Anonymous
      August 28, 2012 at 12:39 am

      Thank you for taking the time and effort to do a survey.

      I think I was one of your survey participants who was not diagnosed with CIDP for 3 plus years? I did your survey under the name “Limekat”.

      Will this survey information be sent to a medical organization?

       

    • Anonymous
      September 6, 2012 at 7:08 pm

      limekat – if I honestly thought they would find it useful, and it not be used for profit (by anyone) then I would be more than happy to share my results.  However, so far any/all have been very skeptical about the scientific nature of the survey and ignoring the fact that this is about the patient and for the patients, so of course it is subjective – just like the consultant asking questions or getting a questionaire in the mail. Still I don’t care it is useful information and the rest of the posts will be presented in the same way (it will just take me a while due to the number).

    • Anonymous
      September 22, 2012 at 5:35 pm

      I have just published the third part of the results onto my blog:

      http://mycidp.blogspot.com

      This is about: Where it started and areas affected.

      Some of the findings are curious and should merit consideration by others far more able than me.

      Thanks Drew

    • Anonymous
      September 23, 2012 at 12:51 am

      Once again thank you for all your effort with this CIDP survey and posting its results.

    • Anonymous
      September 24, 2012 at 1:49 pm

      Dear Drew,

      Thank you so much for all the work you are doing. I would like to comment on the third part you have published. Excuse me for my poor English, it was twenty years ago when I graduated 😉

      I allready had the assumption that people with CIDP have more problems with their hands than people with GBS. And you hear a lot of complaints like ‘my fingers are so bad, I can hardly use my computer’. Still you hardly find those symptoms in the statistics. I think this is some kind of ‘self selection’ (I really don’t know whether this is the right scientific expression).

      When you suffer from problems with your fingers, you are not very likely to take part in surveys or to be an active member on the forum. I often do not take part in surveys myself, as I have to choose between, for instance, filling out a form or brushing my teeth. So I think a lot more people have ‘fingerissues’ than appears from your survey.

      Still, very great survey, I just wrote this as ‘something to consider’.

      Kind regards,

      Willem

    • Anonymous
      September 29, 2012 at 2:13 pm

      Willem,

      Thanks for you kind words.  I have quite a bit more to publish.  It just takes me time to put each set together.  I have now over 400 results so will repeat the stats for the larger group at then end.  Hopefully I can get to 500 by then.

       

      Drew

    • Anonymous
      December 9, 2012 at 8:35 am

      GBS/CIDP Survey

       

      I have just published the eighth part of the results onto my blog:

       

      http://mycidp.blogspot.com

       

      This is about: Treatment periods, how active people are and the external care required.

       

      I hope you find it useful.

       

      Thanks Drew

    • Anonymous
      December 17, 2012 at 12:12 am

      Thank you again for all your work making this survey into graphs and readable charts. I just went to your link and studied the results.

    • Anonymous
      January 19, 2013 at 8:20 am

      GBS/CIDP Survey

       

      I have just published the tenth part of the results onto my blog:

       

      http://mycidp.blogspot.com

       

      This is about: Nerve pain, how bad and when.

       

      I hope you find it useful.

       

      Thanks Drew

    • Lori222
      January 22, 2013 at 3:57 am

      interesting and useful survey Drew, thank you for taking the the time to do it 🙂

    • Anonymous
      February 23, 2013 at 9:43 am

      GBS/CIDP Survey

       

      I have just published the twelfth part of the results onto my blog:

       

      http://mycidp.blogspot.com

       

      This is about: the ability to work and how healthy they are.

       

      I hope you find it useful.

       

      Thanks Drew

    • Anonymous
      March 2, 2013 at 8:14 am

      My GBS/CIDP Survey is closing on March 10th 2013

       

      Please, anyone with GBS/CIDP who hasn’t filled it in do so quickly!

       

      I have written some conclusions on the survey and results so far.

       

      http://mycidp.blogspot.com

       

      I am presenting the findings to the GBSSG UK on April the 20th.

       

      Thanks to all those who did fill in the survey.

       

      Thanks Drew

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