CrowdSpeak: reflections on week-2 of the New Year

Happy Birthday Wikipedia: enabling the crowd that is what we also want to do. #CrowdSpeak #MSBlog #CrowdacureMS #BrainHealth

ZEUS: “Good news is we had a teleconference on Tuesday to discuss submitting a grant to the NHIR to do the ‘ ZEUS’ trial; i.e. HSCT vs. Alemtuzumab. You should feel proud of yourself as this was a trial designed by you and clearly addresses an unmet need. The grant application will be led by Paolo Muraro from Imperial College.”

DIGITAL HEALTH: “Alison and I went to a meeting on digital health on Wednesday. Our University will be launching a funding call to prime digital health research. On coming away Alison chastised me for suggesting several potential digital health projects. She doesn’t believe in going digital for digital’s sake. In most circumstances paper, and face-to-face consultations, are best. Alison presented our portfolio of digital health tools including our EDSS calculator. I hope you are using it? We are about to apply for funding to make it multilingual. “


CASE STUDY: “We started teaching our 2nd year medical students their Problem-based learning (PBLs) exercises this week. Mouse Doctor included a new PBL on multiple sclerosis. It has got them thinking and will cover all the big issues we are trying to address with the management of MS. Early diagnosis, early treatment, monitoring, treat-2-target, brain health, etc. I have included the PBL below for you to read. As part of our PBL season I will be doing the first Barts-MS case study via a Google Hangout at 13h00 GMT on Monday the 18th January. If you haven’t read the case study and completed the survey please do so before Monday. If you miss the Hang-out don’t worry, I will be recording it to YouTube for you to watch at your leisure.”


CROWDFUNDING: “Our crowdfunding project to enable Charcot Project 2 launched last week. We are gradually getting there with over 140 donations so far. Thank you. As you are aware this project is very important for our group. Why crowdfunding? I was reluctant to go this route, but the idea came from you the community. Somebody suggested we do it via a comment. More importantly the money will be used to get the ARTEMIS trial off the ground. This study was designed and named by you. It therefore makes sense that it should be partly funded by you. If you haven’t done so already we would appreciate a small donation. You may not have been aware of it but today is Wikipedia’s birthday. Wikipedia is 15 years old today; the most mature crowdfunded and crowd sourced platform there is. I would like to think that the Barts-MS Research Blog could be run on the same principles as Wikipedia; information that is created by the community for the community and is free at point of contact with no advertising. in this light we have asked Professor Basil Sharrack to prepare a guest post for next week in response to the BBC’s Panorama programme on HSCT in MS; the programme is due to run on BBC1 on Monday night.”


CLADRIBINE: “You may have noticed that this week has been Cladribine week. The posts on cladribine that have appeared on the blog this week are self-explanatory. What we are trying to do with cladribine is offer an effective DMT at an affordable price for patients who can’t afford innovative high-cost drugs. We are not saying that cladribine is for everyone, but it at least provides us with an option of treating pwMS with ongoing inflammatory activity when they are ineligible for DMTs under current NHS England guidelines. It is also much safer than mitoxantrone, which we have now stopped using. We would also not refuse a request by other pwMS for cladribine if they thought the drug suited their needs better than the other options available. For example, some pwMS want an induction therapy that it safer than alemtuzumab or don’t want the monitoring requirements of alemtuzumab because of their lifestyle. We are now living in an era where the management of MS is not about which DMT you are on, but a treatment philosophy of treating-2-target of NEDA. You can get to this target via many different routes. As you are aware cladribine is one of our drugs on our essential off-label list.”


BRAIN HEALTH: “We are continuing to promote the holistic management of MS and brain health is one way of framing this strategy. I have personally bought into this approach and continue to challenge my colleagues and you to participate. One component of the brain health initiative is wellness. Wellness means different things to different people. I want you to reflect on this question and may be if we get a chance we can debate the issue on a post in the next few weeks.”

CoITeam G will be recipients of a grant from Crowdacure to perform this research

2 thoughts on “CrowdSpeak: reflections on week-2 of the New Year”

  1. re " Wellness means different things to different people. I want you to reflect on this question and may be if we get a chance we can debate the issue on a post in the next few weeks."Yes good idea, I would like to debate the issue.

  2. The other day I was at my local public library and picked up a booklet on free government funded adult local 'Self Health' courses in wellbeing and personal development. On the back of the booklet says Self Health is funded the government SFA (Skills Funding Agency and BIS (The Department for Business, Innovation and Skills). There are funding 5,000 courses across the country I am in England. With cut backs in NHS funding for mental health and wellbeing I think these courses are great. Courses in Managing anxiety, managing depression, building confidence, coping strategies, breathing practices and mindful movements, sleep matters. These courses I feel could benefit MSers.

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