Wednesday, 9 September 2015

ClinicSpeak: MS Roadshow St Georges' Hospital

St Georges' MS Roadshow. #ClinicSpeak #MSRoadshow

The Programme: 
  1. Overview of MS Services at St Georges - Dr David Barnes & Ms Sarah White
  2. Progressive MS & Neuroprotection - Prof Gavin Giovannoni
  3. Targeting Secondary Progressive MS: the MS-SMART Study - Dr Floriana De Angelis
  4. Add-on therapy to slow down SPMS: the PROXIMUS study - Dr Monica Marta
  5. From mouse to man: the CANBEX spasticity study - Dr Rachel Farrell
  6. Can we reduce the burden of MS-related urinary tract infections – Dr Angharad Davis
  7. Q&A
  8. Discussion
"We did another one of our MS Roadshows last night. It was kindly hosted by the St Georges' MS Team in Sutton. I think we must have had about 100 people attend. As always the attendees raised more questions than we could answer and I was taken to task for not disseminating our research activities more widely and assuming that everyone with MS has access to the internet and is a digital native. I can only apologise and we will work on ways to reach the 'non-natives' and people with no or poor internet access."

"Some of you are asking what is a digital native?"

"The term digital native was coined by Marc Prensky in his 2001 article entitled 'Digital Natives, Digital Immigrants', in which he describes the decline in American education to educators' failure to understand the needs of modern students: 'the arrival and rapid dissemination of digital technology in the last decade of the 20th century' had changed the way students think and process information, making it difficult for them to excel academically using the outdated teaching methods of the day. Children raised in a digital, media-saturated world, require a media-rich learning environment to hold their attention; these are Prensky's 'digital natives'. In general digital natives are described as the generation born after 1980."



"Being challenged about our dissemination platform being too digital is why I am doing this post. It is clear we need to think of other ways of doing things. This is why I need your help. Do you think we need more face-to-face times, meetings, newsletters, etc.? The advantage of the digital platform is the rapidity of getting it out there and the ease of production."

"As a starter the NIHR has created a web tool for the UK public to find out about disease specific trials near them. It is easy to use give it a try: UK CLINICAL TRIALS GATEWAY."

"Some of the other questions that came up last night that I will answer for the greater community over the next few days were:
  1. Would I recommend faecal transplants as a  treatment of MS?
  2. What do I think of probiotics as a treatment of MS?
  3. Why can't people with MS in wheelchairs be enrolled in clinical trials?
  4. Why don't GPs prescribe prophylactic antibiotics to prevent urinary tract infections?
  5. How do you avoid all the sugar in cranberry juice when drinking it to try and prevent UTIs?
  6. Why do I get vertigo after standing for more than 15 minutes?
  7. I haven't seen a neurologist for over decade. Whenever I attended my annual appointment he simply said how are you, unfortunately, as you have PPMS I can't offer you anything, see you next year. My appointments lasted less than 5 minutes and were frankly a waste of time. Why should someone with PPMS bother seeing a neurologist?
"Please feel free to ask questions if you feel I have left things out."

7 comments:

  1. Why don´t prescribe neuroprotectants to PPMS SPMS RRMS?

    ReplyDelete
    Replies
    1. There aren't any neuroprotectants licensed for MS yet. Hopefully this is going to change soon.

      Delete
  2. A very interesting conference. The information was rather overwhelming. Hope for many and answers to questions that for so long have being left in limbo. MS patients have lost a few battles but hopefully science and research will do their job and improve the odds to win the war. Looking forward to be able to access the right information at the right time.

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  3. Could you show me how to get my two kids to sit nicely, as per the photograph please? :)

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  4. Excellent initiative! I would love to participate in events like this here in Brazil, the problem is that everything is very small ... The conference was transmitted over the Internet? Sure I am a digital native ... What about Coenzyme Q10, which positioning regarding use it in the treatment of MS?

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  5. Most of those described as Digital Natives seem to me to be closer to Digital Package Holiday Makers. They go to the same resorts (sites) as their friends, never travel far and never make any effort to speak the language. To be a native takes a great deal of thought and effort, go watch hunter gatherers making it look easy and then try it. Maybe they are closer to "the common clay of the new west"

    ReplyDelete

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