Survey results: Webinars or Twitter Chats

Webinar vs. Twitter Chat survey results. #MSBlog #MSResearch #ClinicSpeak

"It is clear that you would prefer me to do weekly or monthly Webinar rather than Twitter Chats. It is also clear that most days of the week will be fine, but you would prefer an evening. I have investigated several platforms for delivering this and I have selected Google Hangouts for a trial; it is a free platform that allows live streaming and for 9 talkers to be present simultaneously. Google Hangouts also allows the webinar to be recorded on YouTube and embedded on the blog. I therefore propose running the first one this Friday at 17h00 (UK summer time) and will address the question on what has MS got to do with an iceberg."

"I have also posted the list of proposed topics below; it is rather long and covers most things. Please fee free to leave more suggestions."


Suggested topics for discussion:

  1. Is PPMS different to RR and SPMS?
  2. Why do you think EBV is the cause of MS?
  3. What is benign MS? What is active MS? What is aggressive MS?
  4. Latest research, clinical trials
  5. I think this is an excellent idea. It increases awareness and gives people a chance to find out more.
  6. A recording to be made available afterwards is essential for overseas listeners as well as other people who were unable to listen. Sent to an email address as an attachment.
  7. What do you think of a nominal fee of £1 or $1 or €1?
  8. Have you thought of a guest speaker/talker or two
  9. Future therapeutic targets for inflammation and neurodegeneration
  10. Neural repair initiatives
  11. Mechanisms of disease (possible causes and transition from inflammatory to degenerative.
  12. COGNITIVE DISORDERS.
  13. ACCESSIBILITY TO COGNITIVE RESOURCES
  14. BIOMARKERS FOR RELAPSES. NEWER MRI TECHNOLOGY
  15. How does smoking cause MS? Does smoking cause progressive MS?
  16. Future therapeutic targets for inflammation and neurodegeneration
  17. Neural repair initiatives
  18. Mechanisms of disease (possible causes and transition from inflammatory to degenerative.
  19. Early aggresive treatment
  20. Nutraceuticals clinical trials
  21. Progression of MS, Progressive MS. Secondary progressive MS and potential treatments. Inclusion criteria , why is there an age limit?
  22. Latest research, best practices
  23. Question : Would the webinar materials be available to view after the live session, for those unable to attend ?
  24. Other topics : the variety of mab drugs now available / in development, how they work, what are the risks and how can we move from one to another
  25. MS progression and how to stop it.
  26. Seems once MS reaches a more progressive phase there are very limited options to slow degeneration. Would like to know of any research in this area.
  27. Comparitive effectiveness of DMTs, drugs in development
  28. Can't think of any at the moment !
  29. Pushing for highly effective treatments on the NHS.
  30. Better disease monitoring with MR, potentially including brain volume studies.
  31. The transition through the various stages of MS (benign, CIS, RRMS, SPMS : PPMS) / how to define and manage expectations
  32. Methods and approaches used to engage with different demographic, age and disease duration groups
  33. What influences the work / unemployed / leisure balance ? How can this be modified and is it desirable to modify?
  34. Progressive MS
  35. You frequently use the same slides for your presentations, but there are a few of them I don't quite understand without a little more interpretation. So, just going over your most used slides might be helpful. (Like that one with the diamonds?)
  36. Updates on the Charcot project.
  37. A conversation about the Big Pharma Alternative, if you think there are ways we can be doing more to advocate for that.
  38. It would be interesting to be walked through the process for testing on mice, actually. How are they given EAE? How is it activated? What happens to the mouse once it's come down with it.
  39. Anything else you find interesting.
  40. If you did one on CCVSI, methanol, or curing MS by eating your vegetables, I wouldn't attend those.
  41. Sexual problems in MS
  42. Vitamin D and MS
  43. Models of ms
  44. Your first topic sounds very depressing, btw.
  45. What's new and what's in progress.
  46. Cognition
  47. How does smoking cause MS?
  48. Charcot project update
  49. Pregnancy and MS
  50. BG12 and related drugs
  51. Social media and pseudoscience
  52. CCSVI
  53. Fampridine and visual symptoms
  54. No preference
  55. NABS
  56. Cognition
  57. EBV, progressive MS, cognition, dementia, risk
  58. Secondary Progressive MS
  59. Remyelination
  60. Research on cause of MS
  61. Research on cure
  62. This is an explanatyion, not a list of topics:
  63. I answered no because I have cut down on my MS- related reading, which had become obsessive and excessive. My daughter's current medicine seems to be working and a break from MS is good for all of us.
  64. Hoping and praying that the current stability and improvements continue
  65. EBV
  66. Fatigue
  67. New therapies
  68. Neuroprotection
  69. Have you ever thought of starting up a page on g+ and then having a 'google hangout' - they are very successful for University courses and the Dalai Lama!
  70. Why not top of the month issues?
  71. Any chance they could be recorded for later viewing? Thanks! I am generally too busy to watch something at a specific time, but would love to see webinars produced by you.
  72. CCSVI
  73. Anything.
  74. MS pathology, Stem Cell therapies, Immune tolerance restoration
  75. Anything relevant to patients
  76. Research, dealing with MS symptoms, current and future drugs
  77. Diet and MS - particularly link with dairy
  78. Halting or slowing progression in SPMS
  79. What is happening when no active disease for many years after first relapse
  80. Predicting prognosis
  81. Upcoming treatments - in general speak. often, the information is too clinical to understand. Also, perhaps what the medical research community is doing collectively/ Is there some organization that is collecting all the efforts to combat MS? I see efforts in US and UK are they duplicating efforts? Is there an info sharing community so scientists can learn from each other?
  82. I'm working in the industry/pharmacovigilance: MS in daily life: symptoms, patient's quality of life, progression of disease... new drugs in pipeline, safety of current drugs

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