Saturday, 27 July 2013

Clinic speak: personal consultations

"Whilst lying on the beach and getting my vD levels up I have been thinking about MS and our blog and how it should evolve. My beach think has become an annual ritual; but more on this later when I highlight our research priorities for the new academic year that begins in September."

"As a result of the blog I get a lot or personal emails asking for advice about treatment and personal issues. Legally I am not allowed to respond to these emails. I had plans to start to a private e-medicine portal to deal with this issue, but I have had to shelve this idea as I simply don't have the time and resources to launch this service at this point in my career. In fact when I did due diligence on the idea I realised that it would probably be a full-time job and I would need to set-up a start-up company to raise finance to get the project off the ground. Another option was to give the idea away, but then I would not have control over its implementation. I need to have control over its design and implementation to make sure it achieves what I want it to achieve for MSers."

"A simpler solution will be to anonymise the email consultations and to respond to them generically on the blog under a sub-heading 'Clinic Speak'. I have used this sub-heading in the past when discussing clinical issues. Clinic speak postings will not directly report research, but will demonstrate how a practising neurologist, or MSologist, uses evidence to aid clinical practice and decision making. Before expanding the brief of this blog into the adoption and clinical translation of evidence, or research, I would appreciate your thoughts about this proposal?"

06 May 2013
Clinic speak: poor sleep due to bladder overactivity. Do you have night-time bladder problems? This post is for you. #MSBlog #MSResearch "Recently I have focused on sleep problems in MS. One particular problem is ...
14 Feb 2013
Clinic speak: DABDA or DABDAA. #MSBlog MS is emotionally exhausting! "Being a neurologist, who sees MSers, a clinical scientist, who studies the disease, and one who puts his head above the parapet, it is getting ...

14 comments:

  1. will significantly benefit MSers

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  2. I'm interested in your research priorities. I hadn't thought of MS research in terms of academic years. I just thought MS research was like other jobs e.g. 25 days leave a year.

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  3. With regard to research priorities, I think we are nearly there on anti- inflammatories. Dr Chataway and co are leading on neuro protection. Cambridge and Edinburgh are leading on remyelination. If Team G is to have a priority, it has to be prevention or neuro restoration. EBV vaccination when available will deal with the former. So neuro restoration selects itself. Best of luck.

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  4. Speaking very personally I find all your observations contacts and regular digest incredibly important in my life and frankly - survival. So anything that enhances that experience would be great.
    I chose to live in Spain because of a definite improvement in my quality of life and I do have a neurologist and have at least two MRIs a year but custom and language differences mean there is very little discussion of issues personal to me. Hence your column.

    I have a comment re research. No one has ever taken a family history of me. Does this happen these days? I have a family of EBV related auto immune illnesses and it just seemed to be that info slips away somehow.....

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  5. <I would appreciate your thoughts about this proposal?"
    I find Clinic Speak postings on this blog most helpful - I know where I can go for 100% facual intelligent answers as opposed to the other sort.
    Prof G et al - It never ceases to amaze me how much of your private time you give to this blog (as well as other activities) I'm surely not the only one to have noticed this - I just wanted to let you all know hpw much it is appreciated - enjoy your vacation

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  6. Prof G, if you start offering generic anonymised consultations via the blog you will be absoltuly flooded! How will you ever find the time

    You still have to think of liability and legal stuff. The world has all sorts of people . What if an emailer turns out to be a crank who likes litigation?

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  7. It would be great if you can find a way to do it without burning yourself out, or as anther poster says, being burnt out by a crank. Thanks to you and all of Team G as always, and enjoy your holiday :-)

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  8. Thankyou for thinking of this. I would love you to do this for us MSers if you think it possible. Your blog is already an enormous help :)

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  9. How you find the time and emotional strength to deal with MS and MSers leaves me breathless. MS is one big learning curve, thank goodness there is some there with both the knowledge and understanding.
    Clinic speak offers an insight into MS and its consequences. What you report gets straight to the point without waffle or obfuscation - please don't stop them

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  10. This blog is incredibly useful - thank you team G.

    Using posts with the sub-heading 'Clinic Speak' to respond
    generically to email would make it even more so.

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  11. CLINIC SPEAK

    There are many more CLINIC SPEAK posts in this blog for example see list below.
    And there must be more for instance on vitamin D etc.
    If they all get the heading CLINIC SPEAK then it will be easy to find them using "search this blog".

    A CLINIC SPEAK on when to stop taking a DMD would be very useful as well etc, etc.

    Clinic speak: personal consultations
    http://multiple-sclerosis-research.blogspot.nl/2013/07/clinic-speak-personal-consultations.html

    Clinic speak: should I start glatiramer acetate?
    http://multiple-sclerosis-research.blogspot.nl/2013/07/clinic-speak-should-i-start-glatiramer.html

    Clinic speak: DABDA or DABDAA
    http://multiple-sclerosis-research.blogspot.nl/2013/02/clinic-speak-dabda-or-dabdaa.html

    Clinic speak: poor sleep due to bladder overactivity
    http://multiple-sclerosis-research.blogspot.nl/2013/05/clinic-speak-poor-sleep-due-to-bladder.html

    Bowel Problems
    http://multiple-sclerosis-research.blogspot.nl/2013/05/bowel-problems.html

    Research: bowel symptoms and transanal irrigation
    http://multiple-sclerosis-research.blogspot.nl/2012/09/research-bowel-symptoms-and-transanal.html

    Research: Outcome measures for constipation
    http://multiple-sclerosis-research.blogspot.nl/2012/03/research-outcome-measures-for.html

    Anorectal dysfunction in MS
    http://multiple-sclerosis-research.blogspot.nl/2012/08/anorectal-dysfunction-in-ms.html

    Research: bladder botox 5-year follow-up
    http://multiple-sclerosis-research.blogspot.nl/2012/12/research-bladder-botox-5-year-follow-up.html

    Yoga for neurogenic bladder dysfunction
    http://multiple-sclerosis-research.blogspot.nl/2012/11/yoga-for-neurogenic-bladder-dysfunction.html

    Research: Bladder control in MS
    http://multiple-sclerosis-research.blogspot.nl/2012/03/research-bladder-control-in-ms.html

    Research: Whats good for the bladder may not be good for the brain
    http://multiple-sclerosis-research.blogspot.nl/2012/07/research-whats-good-for-bladder-may-not.html

    etc, etc, etc

    Asssessing infection before steroids
    http://multiple-sclerosis-research.blogspot.nl/2012/07/asssessing-infection-before-steroids.html

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