Wednesday, 25 May 2016

PoliticalSpeak: Saving Good Sams

Save the Good Samaritan; help Barts-MS mobilise support. #MSBlog #PoliticalSpeak #GoodSams

"This is a post and a call for all the MSers who are under our care at the 'Royal London Hospital'. This post is blatantly political but it is relevant to the care of people with MS who attend the MS service at the Royal London Hospital. The Pub, or Public House, is quintessential English. The pub is not just a place to drink beer, wine, cider or even something a little bit stronger, it is a unique social centre, it is usually the focus of community life in villages, towns and cities throughout the length and breadth of the country."

"In our little patch, between our research Institute and the hospital, there is pub called the 'Good Samaritan' or 'Good Sams'. We love 'Good Sams' it is the one institution that makes our patch social. Closing it down would destroy 'social capital', which is worth so much more than 'capital'. We meet in 'Good Sams' to celebrate promotions, successful PhD vivas, the passing of exams, birthdays, births, etc. We chew the cud in Good Sams and many an MS research hypothesis has been born in Good Sams. 'Good Sams' is where our medical and dental student celebrate the completion of their end of year exams. In short 'Good Sams' is the heart and soul of Barts and The London Medical and Dental School and The Royal London Hospital."

"Good Sams was established in around 1785 and rebuilt in its present form in 1937. It is one of the last remaining pubs for those who live nearby; work for and visit The Royal London Hospital. Unfortunately, it is under threat of closure. I assume this relates to money. To the current owners: if this simply about making money this is a mistake. Please think about all the fond memories and nostalgic tears that are yet to me made and shed in 'Good Sams'. Life is so much more than pounds, pence, shekels and dimes. Whenever I enter Good Sams I feel happy and content; it enriches the quality of life of all of us her work on the Whitechapel campus and for those who come to be looked after and cared for at the Royal London Hospital. Some concerned locals have set-up a petition in an attempt to save 'Good Sams'. Barts-MS supports this petition and if you agree with us we would encourage you to support the campaign. This is not only about us, but about many an MSer who has stopped for a pint after clinic."

CoI: we work around the corner from Good Sams, chances are if you come to visit us we will treat you to a pint at 'Good Sams'."

Tuesday, 24 May 2016

Tracing your lesions through the MR Myelinoscope - news from the imaging department

Longitudinal Observation of Individual Multiple Sclerosis White Matter Lesions Using Quantitative Myelin Imaging
Kitzler HH, K√∂hler C, Wahl H, Eisele JC, Deoni SC; Rutt BK, Ziemssen T, Linn J. 
Poster # 1282, 24th annual meeting of ISMRM

One of you recently asked the question whether lesions on MRI can disappear, and I said yes they can, and that this has to do with several factors including lesion severity (lots of axonal loss or not), subsequent lesion repair, and the tools & techniques used to detect them (or not).  Now I just returned from Singapore after attending the International Society for Magnetic Resonance in Medicine (ISMRM), where I saw this work using an MRI technique optimised for detecting the myelin content in lesions (let's call it an "MR Myelinoscope").  It nicely shows that whilst lesions may look the same on our standard workhorse MRI, they may be quite in different "states" when looking through the MR Myelinoscope.

The panel above shows that over 12 months lesions on FLAIR (standard workhorse technique, top row) don't change very much, however the Myelinoscope (bottom row) shows dynamic change over time (see arrows): A lesion hardly visible at month 0 is largest at month 3 (demyelination), and then smaller (suggesting remyelination).

Panel showing 4 different lesion "states" (differences in myelination status over 12 months) using the MR Myelinoscope whilst standard FLAIR doesn't change.

Nice work indicating how crude our current standard MRI techniques are in monitoring the severity and dynamics of tissue changes within MS lesions.

Whilst the MR Myelinoscope technique is quite complex to implement, and therefore not available at many centres, it could be useful in trials of potentially remyelinating drugs where only a limited number of centres would be involved.

CoI: none

We're redefining our Mojo

Anyone for a Mojito cocktail? That was one recommendation. #MSBlog #MSResearch #Mojo

We’re back! Following one week of painful – albeit self-inflicted – soul searching we’ve now discussed the positioning of the blog. Thank you for all the feedback (positive and not-so positive) whilst the blog was suspended. We reviewed ALL of your comments, and felt very much encouraged to resume blogging. There are things we can improve, and below are some of our action points moving forward:

  • Posting Schedule: We drafted a posting schedule that will hopefully free up some time for the contributors. This is obviously not set in stone and won't stop us responding to current events, TV programmes, News articles in relation to MS as they come out.
  • New faces and guest posts: We will continue to invite researchers and clinicians to write guest posts, however will also offer the opportunity to people with MS, their family members, friends, and people involved in charity work. Please get in touch if you would like to contribute, however note this is a platform for MS research not for advertising.
  • Barts MS Charity: We will set up the ‘BartsMS Charity’ to support our research, maintaining the blog, and off-label prescribing initiatives, particularly in resource-poor health care environments. More information about this coming soon.
  • Better social media coverage: 
  • New ideas
    • Legibility: The blog home page will now show 5 posts at a time. What do you think? 
    • We plan to update the “Trials and Studies” section of the blog. 
    • We’re planning to extract all the clinical advice and information from previous and future posts to create an information resource that is easily searchable. 
    • Prof G promised to be more diligent with producing the case studies and hopes to get some back-room help. 
    • What about podcasting and vlogging? Do you think we need to go multimedia? 
As always, we are interested to hear your thoughts on the above and beyond. It seems as if a lot of you don't like the use of anonymous comments. It would be nice to know if many of you are repeat commentators; who knows you may take on Dr Dre at his/her own game! Can we suggest you take on a pseudonym if you don't want to let the world know who you are?

Photo credit: Dolly Clew

Tuesday, 17 May 2016

ThinkSpeak: Lost our Mojo-2?

Getting our mojo back: Barts-MS Blog #ThinkSpeak #MSResearch #MSBlog #LostMojo

Dear Readers

Thank you for your patience. Some of you are alarmed at the suspension and subsequent closure of the blog. Some of you may have read my post on 'Have we lost our Mojo' and the comments and discussion it generated. As a result of this we have decided to close the blog and reassess how it needs to evolve. Is it still needed? If yes, in what format. How to we control its content? We acknowledge that it is widely read and that some of our readers value our commentaries (thank you). However, with this comes extra responsibilities, which we need to reflect on. 

The following was our original mission statement:

"The aim of the Blog is for the Barts-MS to update you on the latest research in MS with an emphasis on the research we are involved in. A major reason for maintain the Blog is to thank the funders of our research. Funders encourage us to engage with the general public, people with MS and their families and other people with an interest in MS. We believe you have the right to know what we are spending your research money on! The purpose of our work is to improve our knowledge and understanding of MS with the goal of improving the lives of people living with this disease.

For us as a group of MS researchers the blog allows us to reflect on our work, assess its potential impact and plan for the future. For some of our research projects we need your help; this may be as a volunteer for a particular study or simply helping us to spread the word. A major benefit of the blog is that it encourages reflection and team work and provides us with an opportunity to celebrate our successes."

We will decide over the next few weeks if this mission statement is still relevant, have we stuck to our mission, have we strayed too far from it and whether or not it needs to be changed. While we considering all these issues you are welcome to comment.