Published on March 9, 2014
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
Why did I get involved in social media?
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 examination The NHS is working hard for you!
Why speak to the individual when you can have a dialogue with several of your MSers at once? Why repeat yourself?
A BLOG FOR PEOPLE WITH MS AND THEIR FAMILIES “Interpreting the Good, Bad and other Research News”
Who is winning the cola wars?
Who is winning the interferon wars?
Who is winning the tablet wars?
Who is winning the Pharma wars?
Who is winning the mobile wars?
Reasoning by analogy
My beloved country "There is a lovely road that runs from Ixopo into the hills..." Alan Paton, Cry, The Beloved Country, Ch. 1
HIV/AIDS Analogy Four types of AIDS denialist: 1. The ‘dissident scientist’ who lends credibility 2. The ‘cultropreneur’ who peddles quack therapies 3. The ‘living icon’ or ‘long-term survivor’ 4. The ‘praise-singer’ or ‘journalist’ or ‘politician’ who sows doubt about HIV causing AIDS The HIV/AIDS community 1. Patient activists / organisers 2. Access to media 3. Conspiracy theories
Do you want to have regrets?
Social networks are the key to the world
Advanced Directive Fertility Pregnancy Anaesthesia Pathogenesis Vaccination Autoimmunity Relationships Nurse specialists Blood/Organ donation Infections Brain donation Web Carers Resources Respite Family counselling What is Sudden MS? death Travel Research Alternative Medicine Sexual Balance Bladder dysfunction problems Breast Feeding Studying Employment Clinical trials Driving Smoking Exercise Diet Insurance Epstein Bar Virus Vitamin D Evoked Potentials Differential Diagnosis Diagnostic Criteria MRI Maintenance Escalation Induction DMTs Genetic counselling Lumbar puncture Falls Psychosis Depression Anxiety DVLA Brain Cognitive Pharma Health Reserve Genetics Bowel Gait Pain Fatigue OCD Suicide Depersonaliation Emotional Restless Tremor Insomnia lability legs Risks Side Effects JCV status 2nd line Adverse events 1st line Disease Brain atrophy progression Neuroprotection Disease-free Exercise therapy Monitoring NABs Relapses Outcome measures NEDA OCT T2T Neurofilaments Blood Tests An holistic approach to MS Spasticity Cognition Seizures Swallowing Double vision Oscillopsia Visual loss Photophobia Hearing loss Tinnitus Occupational Narcolepsy Rehab Therapy Apnoea Physiotherapy Walking aids Suprapubic catheter Pressure sores Speech therapy Intrathecal baclofen Wheelchair Tendonotomy Rhiztomy Intrathecal phenol Colostomy Gastrostomy Rhiztomy Prevention Diagnosis Therapist Functional neurosurgery Hiccoughs Fractures Movement disorders Osteopaenia Palliative Care Legal aid Advanced Directive Social services Hospice Respite Assisted suicide Dignitas Terminal DMT Symptomatic Counselling
Control Multiple sclerosis
Key milestones in the development of Fingolimod 1992: Fingolimod (FTY720) first synthesized by Japanese scientists 1997: Fingolimod in-licensed by Novartis for clinical development 1998: First studies in man (Phase 1 trials) and subsequent start of transplantation trials 2003: Start of MS Phase II trial June 2005: Presentation of Phase II study results followed by publication in NEJM 2006 Jan 2006: Start of Phase III FREEDOMS study in RRMS May 2006: Start of Phase III TRANSFORMS study in RRMS June 2006: Start of Phase III FREEDOMS II study in RRMS July 2008: Start of Phase III INFORMS trial to assess suitability for treatment of PPMS Dec 2008: Release of TRANSFORMS study results and presentation at AAN April 2009 Sep 2009: Release of FREEDOMS study results and presentation at AAN April 2010 Dec 2009: Regulatory submission to FDA and EMA (ROW submissions in Q1 2010) Feb 2010: Results of Phase III TRANSFORMS & FREEDOMS studies published in NEJM Sep 2010: Approval by Russian Health Authority Sep 2010: Approval by the US FDA for relapsing MS ? 2015: ? approval by the US FDA for PPMS
RESEARCH BLOG www.ms-res.org “Drug-The Game” Development Process-Why is it Slow
Start of Progression What do you call someone who has MS? Term Patient PwMS MSer MS Blog MS Society 8% 38% 52% 8% 68% 12% Science 98% 24% 0%
300 MSers Year 1 Placebo tablet Year 2 600 MSers 300 MSers Active tablet Year 3
Spinal fluid neurofilament levels Petzold et al. J Neurol Neurosurg Psychiatry. 2005 Feb;76(2):206-11.
Axonal damage in relapsing MS is markedly reduced by natalizumab = Gunnarsson et al. Ann Neurol 2010; Epub.
30 MSers placebo tablet 6 months 6 months 6 months 6 months 60 MSers 30 MSers active tablet LP1 Recruitment LP2 Trial 2 years LP3 Data analysis
600 MSers for 7 years 60 MSers for 2 years 3 LPs = 10x as many trials in a ⅓ of the time
n = 127 66% 21% 13%
Widening the appeal!
The house of commons debates
UK MS Debating Society 2012
Adapt or die?
Analogue or digital? Dinosaur or wired?
“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…..”
Benefits & Consequences
THANK YOU FOR LISTENING I would like to thank my team for making things happen!
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