• 1.Multiple Sclerosis and Social Media* *social networks = social networking sites; for example Twitter, Facebook, Blogs, Wikipedia, Wikis, Websites, etc.Gavin Giovannoni Barts and The London
  • 2. Why did I get involved in social media?
  • 3. Time is my most precious resource? Prof Giovannoni is working hard for you! Overbooked, harassed 8 new & 20 follow-up slots per clinic Double-bookings Running between consulting rooms A & B The 5-min history & 5-min neurological examinationThe NHS is working hard for you!
  • 4. TimeRepetition
  • 5. Why speak to the individual when you can have a dialogue with several of your MSers at once?Why repeat yourself?
  • 6. A BLOG FOR PEOPLE WITH MS AND THEIR FAMILIES “Interpreting the Good, Bad and other Research News”
  • 7. CCSVI
  • 8. Who is winning the cola wars?
  • 9. Who is winning the interferon wars?
  • 10. Who is winning the tablet wars?
  • 11. Who is winning the Pharma wars?
  • 12. Who is winning the mobile wars?
  • 13. Vanity
  • 14. Reasoning by analogy
  • 15. My beloved country"There is a lovely road that runs from Ixopo into the hills..." Alan Paton, Cry, The Beloved Country, Ch. 1
  • 16. HIV/AIDS Analogy Four types of AIDS denialist: 1.The ‘dissident scientist’ who lends credibility2.The ‘cultropreneur’ who peddles quack therapies3.The ‘living icon’ or ‘long-term survivor’4.The ‘praise-singer’ or ‘journalist’ or‘politician’ who sows doubt about HIV causing AIDSThe HIV/AIDS community 1.Patient activists / organisers2.Access to media3.Conspiracy theories
  • 17. Do you want to have regrets?
  • 18. Social networks are the key to the world
  • 19. www.multiple-sclerosis-research.org
  • 20. Clinical practice?
  • 21. Clinic Speak
  • 22. Advanced DirectiveFertility PregnancyAnaesthesiaPathogenesisVaccinationAutoimmunityRelationshipsNurse specialistsBlood/Organ donation Infections Brain donation Web Carers Resources RespiteFamily counsellingWhat is Sudden MS? deathTravelResearchAlternative MedicineSexual Balance Bladder dysfunction problemsBreast Feeding Studying EmploymentClinical trials DrivingSmokingExercise DietInsuranceEpstein Bar Virus Vitamin DEvoked PotentialsDifferential DiagnosisDiagnostic CriteriaMRIMaintenance Escalation InductionDMTsGenetic counselling Lumbar punctureFallsPsychosis Depression AnxietyDVLABrain Cognitive Pharma Health ReserveGeneticsBowel Gait Pain Fatigue OCD Suicide DepersonaliationEmotional Restless Tremor Insomnia lability legsRisks Side Effects JCV status 2nd line Adverse events 1st lineDisease Brain atrophy progression Neuroprotection Disease-free Exercise therapy Monitoring NABs Relapses Outcome measures NEDA OCT T2T NeurofilamentsBlood TestsAn holistic approach to MSSpasticity Cognition Seizures SwallowingDouble vision Oscillopsia Visual lossPhotophobia Hearing lossTinnitus Occupational Narcolepsy Rehab Therapy Apnoea Physiotherapy Walking aids Suprapubic catheterPressure sores Speech therapy Intrathecal baclofenWheelchairTendonotomy RhiztomyIntrathecal phenol ColostomyGastrostomy RhiztomyPrevention Diagnosis TherapistFunctional neurosurgeryHiccoughs Fractures Movement disorders Osteopaenia Palliative CareLegal aidAdvanced DirectiveSocial services Hospice RespiteAssisted suicide DignitasTerminal DMT Symptomatic Counselling
  • 23. Big issues
  • 24. ControlMultiple sclerosis
  • 25. www.ms-res.org
  • 26. www.ms-res.org
  • 27. Adoption
  • 28. Education
  • 29. Key milestones in the development of Fingolimod 1992:Fingolimod (FTY720) first synthesized by Japanese scientists1997:Fingolimod in-licensed by Novartis for clinical development1998:First studies in man (Phase 1 trials) and subsequent start of transplantation trials2003:Start of MS Phase II trialJune 2005:Presentation of Phase II study results followed by publication in NEJM 2006Jan 2006:Start of Phase III FREEDOMS study in RRMSMay 2006:Start of Phase III TRANSFORMS study in RRMSJune 2006:Start of Phase III FREEDOMS II study in RRMSJuly 2008:Start of Phase III INFORMS trial to assess suitability for treatment of PPMSDec 2008:Release of TRANSFORMS study results and presentation at AAN April 2009Sep 2009:Release of FREEDOMS study results and presentation at AAN April 2010Dec 2009:Regulatory submission to FDA and EMA (ROW submissions in Q1 2010)Feb 2010:Results of Phase III TRANSFORMS & FREEDOMS studies published in NEJMSep 2010:Approval by Russian Health AuthoritySep 2010:Approval by the US FDA for relapsing MS? 2015:? approval by the US FDA for PPMS
  • 30. RESEARCH BLOG www.ms-res.org “Drug-The Game”Development Process-Why is it Slow
  • 31. Publications
  • 32. Start of Progression What do you call someone who has MS? Term Patient PwMS MSerMS Blog MS Society 8% 38% 52%8% 68% 12%Science 98% 24% 0%
  • 33. Research
  • 34. 300 MSersYear 1Placebo tabletYear 2600 MSers300 MSersActive tabletYear 3
  • 35. Spinal fluid neurofilament levelsPetzold et al. J Neurol Neurosurg Psychiatry. 2005 Feb;76(2):206-11.
  • 36. Axonal damage in relapsing MS is markedly reduced by natalizumab=Gunnarsson et al. Ann Neurol 2010; Epub.
  • 37. 30 MSers placebo tablet6 months6 months 6 months6 months60 MSers30 MSers active tabletLP1 RecruitmentLP2 Trial2 yearsLP3 Data analysis
  • 38. 600 MSers for 7 years60 MSers for 2 years3 LPs = 10x as many trials in a ⅓ of the time
  • 39. n = 127 66%21% 13%
  • 40. Widening the appeal!
  • 41. Political Agenda
  • 42. Peer Banter
  • 43. The house of commons debates
  • 44. UK MS Debating Society 2012
  • 45. Adapt or die?
  • 46. Analogue or digital?Dinosaur or wired?
  • 47. “In a world in which anti-science appears to be on the increase, it is imperative that scientists improve how they engage with the general public about research…..”
  • 48. Benefits & Consequences
  • 49. THANK YOU FOR LISTENINGI would like to thank my team for making things happen!
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    • 1.Multiple Sclerosis and Social Media* *social networks = social networking sites; for example Twitter, Facebook, Blogs, Wikipedia, Wikis, Websites, etc.Gavin Giovannoni Barts and The London
  • 2. Why did I get involved in social media?
  • 3. Time is my most precious resource? Prof Giovannoni is working hard for you! Overbooked, harassed 8 new & 20 follow-up slots per clinic Double-bookings Running between consulting rooms A & B The 5-min history & 5-min neurological examinationThe NHS is working hard for you!
  • 4. TimeRepetition
  • 5. Why speak to the individual when you can have a dialogue with several of your MSers at once?Why repeat yourself?
  • 6. A BLOG FOR PEOPLE WITH MS AND THEIR FAMILIES “Interpreting the Good, Bad and other Research News”
  • 7. CCSVI
  • 8. Who is winning the cola wars?
  • 9. Who is winning the interferon wars?
  • 10. Who is winning the tablet wars?
  • 11. Who is winning the Pharma wars?
  • 12. Who is winning the mobile wars?
  • 13. Vanity
  • 14. Reasoning by analogy
  • 15. My beloved country"There is a lovely road that runs from Ixopo into the hills..." Alan Paton, Cry, The Beloved Country, Ch. 1
  • 16. HIV/AIDS Analogy Four types of AIDS denialist: 1.The ‘dissident scientist’ who lends credibility2.The ‘cultropreneur’ who peddles quack therapies3.The ‘living icon’ or ‘long-term survivor’4.The ‘praise-singer’ or ‘journalist’ or‘politician’ who sows doubt about HIV causing AIDSThe HIV/AIDS community 1.Patient activists / organisers2.Access to media3.Conspiracy theories
  • 17. Do you want to have regrets?
  • 18. Social networks are the key to the world
  • 19. www.multiple-sclerosis-research.org
  • 20. Clinical practice?
  • 21. Clinic Speak
  • 22. Advanced DirectiveFertility PregnancyAnaesthesiaPathogenesisVaccinationAutoimmunityRelationshipsNurse specialistsBlood/Organ donation Infections Brain donation Web Carers Resources RespiteFamily counsellingWhat is Sudden MS? deathTravelResearchAlternative MedicineSexual Balance Bladder dysfunction problemsBreast Feeding Studying EmploymentClinical trials DrivingSmokingExercise DietInsuranceEpstein Bar Virus Vitamin DEvoked PotentialsDifferential DiagnosisDiagnostic CriteriaMRIMaintenance Escalation InductionDMTsGenetic counselling Lumbar punctureFallsPsychosis Depression AnxietyDVLABrain Cognitive Pharma Health ReserveGeneticsBowel Gait Pain Fatigue OCD Suicide DepersonaliationEmotional Restless Tremor Insomnia lability legsRisks Side Effects JCV status 2nd line Adverse events 1st lineDisease Brain atrophy progression Neuroprotection Disease-free Exercise therapy Monitoring NABs Relapses Outcome measures NEDA OCT T2T NeurofilamentsBlood TestsAn holistic approach to MSSpasticity Cognition Seizures SwallowingDouble vision Oscillopsia Visual lossPhotophobia Hearing lossTinnitus Occupational Narcolepsy Rehab Therapy Apnoea Physiotherapy Walking aids Suprapubic catheterPressure sores Speech therapy Intrathecal baclofenWheelchairTendonotomy RhiztomyIntrathecal phenol ColostomyGastrostomy RhiztomyPrevention Diagnosis TherapistFunctional neurosurgeryHiccoughs Fractures Movement disorders Osteopaenia Palliative CareLegal aidAdvanced DirectiveSocial services Hospice RespiteAssisted suicide DignitasTerminal DMT Symptomatic Counselling
  • 23. Big issues
  • 24. ControlMultiple sclerosis
  • 25. www.ms-res.org
  • 26. www.ms-res.org
  • 27. Adoption
  • 28. Education
  • 29. Key milestones in the development of Fingolimod 1992:Fingolimod (FTY720) first synthesized by Japanese scientists1997:Fingolimod in-licensed by Novartis for clinical development1998:First studies in man (Phase 1 trials) and subsequent start of transplantation trials2003:Start of MS Phase II trialJune 2005:Presentation of Phase II study results followed by publication in NEJM 2006Jan 2006:Start of Phase III FREEDOMS study in RRMSMay 2006:Start of Phase III TRANSFORMS study in RRMSJune 2006:Start of Phase III FREEDOMS II study in RRMSJuly 2008:Start of Phase III INFORMS trial to assess suitability for treatment of PPMSDec 2008:Release of TRANSFORMS study results and presentation at AAN April 2009Sep 2009:Release of FREEDOMS study results and presentation at AAN April 2010Dec 2009:Regulatory submission to FDA and EMA (ROW submissions in Q1 2010)Feb 2010:Results of Phase III TRANSFORMS & FREEDOMS studies published in NEJMSep 2010:Approval by Russian Health AuthoritySep 2010:Approval by the US FDA for relapsing MS? 2015:? approval by the US FDA for PPMS
  • 30. RESEARCH BLOG www.ms-res.org “Drug-The Game”Development Process-Why is it Slow
  • 31. Publications
  • 32. Start of Progression What do you call someone who has MS? Term Patient PwMS MSerMS Blog MS Society 8% 38% 52%8% 68% 12%Science 98% 24% 0%
  • 33. Research
  • 34. 300 MSersYear 1Placebo tabletYear 2600 MSers300 MSersActive tabletYear 3
  • 35. Spinal fluid neurofilament levelsPetzold et al. J Neurol Neurosurg Psychiatry. 2005 Feb;76(2):206-11.
  • 36. Axonal damage in relapsing MS is markedly reduced by natalizumab=Gunnarsson et al. Ann Neurol 2010; Epub.
  • 37. 30 MSers placebo tablet6 months6 months 6 months6 months60 MSers30 MSers active tabletLP1 RecruitmentLP2 Trial2 yearsLP3 Data analysis
  • 38. 600 MSers for 7 years60 MSers for 2 years3 LPs = 10x as many trials in a ⅓ of the time
  • 39. n = 127 66%21% 13%
  • 40. Widening the appeal!
  • 41. Political Agenda
  • 42. Peer Banter
  • 43. The house of commons debates
  • 44. UK MS Debating Society 2012
  • 45. Adapt or die?
  • 46. Analogue or digital?Dinosaur or wired?
  • 47. “In a world in which anti-science appears to be on the increase, it is imperative that scientists improve how they engage with the general public about research…..”
  • 48. Benefits & Consequences
  • 49. THANK YOU FOR LISTENINGI would like to thank my team for making things happen!
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