Help US

We have been asked to write a review
about the benefits of social media for the patient, clinician and
researcher so why not help us, in fact please help us. I can do the
Researcher well may be, G can do the Clinician and hopefully you can do
the MSer.

Please Help Us

If you would be willing to write a list of what is good and bad from social media and email ( it to us, anonymity guaranteed (BE WARNED emailing will expose your email address and possibly your name if it is in the Email), then we can collate it and make sure we do not miss too much. 

May be we could have a thread where you put the ideas down so it can be anonymous You can copy and paste your thoughts in to the comments below  so get writing. I suggest using bullet points (single lines with the point) without lots of text as the comments are word limited.
Even the Nutters can have something to say.
What advantage do you get posting spam and hate mail?
The AT above is @ but this just attracts the Bots and the email is full of rubbish from spammers

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  • Hello,

    website – run my own website – very therapeutic

    twitter – no too sure of its value with MS

    internet – very useful, lots of information, use it to get leads for my talks

    MSBLOG – some articles I do not understand, others I do, invaluable information source

    FACEBOOK – use it to keep in touch with people, very useful

    LINKEDIN – use it to find people interested in my talks, extremely useful

    PERSONAL BLOGS – interesting to read otherwise no use

  • Benefits:
    — We see that there are others who have the same issues. It makes our life not seem so bad when others are going through the same and worse.
    — Love this blog, and others like it. It gives me hope that someday someone will have a breakthrough and end this disease.
    — Without the information gleaned from others, I would probably just accepted my neuros recommendation to take Copaxone and left it at that. Now being better informed, I know enough to ask for better drugs if possible.
    — If clinicians/doctors would read the social postings/blogs, they might treat their patients different. This is not my experience, but have read many stories of doctors dismissing patient's concerns/symptoms.
    — Potential to remove common myths of MS. Many don't know anything about the disease besides MSers end up in wheelchairs.
    — Educate on possible causes/triggers of disease such as keeping your vitamin D levels up, etc.

    — So much bad information/propaganda. Everyone has their own agenda and it is hard to tell what is the truth. My first internet searches I performed after diagnosis turned up LDN and CCSVI. The more I read, the more it seemed that the champions of these causes would do everything and anything to get them accepted as a cure. Maybe they work, maybe they don't, but I don't trust them because of the obvious propaganda.
    — All the bad stories. It is a bit disheartening to read stories of those with high EDSS scores. Makes me wonder if I will end up there myself.
    — Twitter=waste of time, in my opinion. I don't want little blurbs, I want to read more info so I can learn.
    — Potential for bullying/discrimination. For example, I keep my MS a secret from my clients. Don't want to take any chances of losing them. I would never post MS on Facebook, etc.

    Hope this helps. Good luck with your research!

  • In all honesty, SamH, I assume, pretty much speaks for all of us MSers, including someone like me who has PPMS. I think she very succinctly and emotionally intelligently sums up the experiences and thoughts of millions of us. (I'm awaiting a put down from Dr dre now.)

  • One real benefit to me was surviving the diagnosis process without going emotionally off the deep end. Finding and reading the stories of other patients on the internet was tremendously helpful. I had much more patience with the process and my doctors than I would have had without the understanding I gained online.

  • I'd add to Sam's post, perhaps, that the education we get from sources like this blog (I also like to go through Projects in Knowledge) inoculate us against misinformation about causes and cures for MS.

    Come to think of it, perhaps those annoying dialogs you have with Dre, Rich, and VV are actually helpful for that very reason. This is definitely the ONLY place we can read researchers have it out with doubters. ("Let us know when you get your paper published in Nature!" Hahahahahaha!)

    • Dre truly is annoying. The man is a monster. He just makes trouble for trouble's sake. It makes me wonder how hard it must be on the actual real people that have to deal with him in the actual world.

    • Anonymous 01.00 pm "Let us know when you get your paper published in Nature!" Hahahahahaha!

      Glad you enjoyed that one! It's fun to take the gloves off sometimes.

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