Sunday, 28 August 2011

Reporting about the blog

Hello Prof G,

I follow your blog, the articles about CCSVI treatment seem to appear ever so often. I think enough has been said this form of treatment for the time being. The publication of the NICE document seems to be a good opportunuty to put the whole issue to bed for a while.

Another thing, I think it would be interesting to see a name against a reply that is made to an entry or piece of news that you publish. Would it worth making it perfectly clear how to ensure this.

Lastly I would undergo 3 lumber punctures if there is a chance that the progress of MS can be stopped even only for a few months.

Patrick

6 comments:

  1. Re: "Another thing, I think it would be interesting to see a name against a reply that is made to an entry or piece of news that you publish."

    This is voluntary; to do this you have to become a member of site and log in. I agree it would be nice. However, MS is a stigmatising disease and large number of MS'ers are in the closet and don't want other people to know that they have MS. I suppose, a way around this would be to use a pseudonym. It is also not that important as long as the blog is a forum for discussion and dissemination of research results.

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  2. Prof G The phone readers don't see the comments

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  3. I can see comments on the phone and this comment is posted from a phone. I can't see them on Google Reader.
    Sorry for being anonymous. It isn' so much because of any stigma but for the sake of privacy, esp. since I'm not the patient. I have no problems sharing with others in the same boat. The problem is that casual acquaintances may stumble on this and read what is very personal.I can see comments on the phone and this comment is posted from a phone. I can't see them on Google Reader.
    Sorry for being anonymous. It isn' so much because of any stigma but for the sake of privacy, esp. since I'm not the patient. I have no problems sharing with others in the same boat. The problem is that casual acquaintances may stumble on this and read what is very personal.

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  4. I too would submit to 3 lumbar punctures and I think you'll find that many people would if would hasten the process of investigating drugs that could help PwMS.

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  5. Re: "I too would submit to 3 lumbar punctures and I think you'll find that many people would if would hasten the process of investigating drugs that could help PwMS."

    Thank you for this. I will need to canvas your opinions on this issue if we are going to get funding for our trial. The referees thought we would not be able to do the trial because MS'ers would not volunteer for 3 lumbar punctures.

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  6. CCSVI treatment will stop the progress for a few months in my experience.

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