CategoryLifestyle and self-management

Self-neglect: the hidden burden of having MS

You may recall my post on using the foot examination to look at the state of my patients’ toenails as an indicator of neglect. Another window is the mouth and the state of a person’s teeth and gums. Self-neglect is a problem in MS. But how big is the problem? The study below using an online survey shows that pwMS have a greater oral health burden than the general population; i.e. they...

Loneliness in 2019

Rehabil Nurs. 2019 Jan/Feb;44(1):52-59. doi: 10.1097/rnj.0000000000000128. Loneliness in Multiple Sclerosis: Possible Antecedents and Correlates. Balto JM, Pilutti LA, Motl RW. Abstract PURPOSE: The prevalence and possible antecedents and correlates of loneliness in multiple sclerosis (MS) was examined. DESIGN: Cross-sectional, comparative study of MS (n = 63) and healthy adults (n = 21)...

MMR to test or not to test?

Can I assume you know about Andrew Wakefield and the fake link between the MMR vaccine and autism? Despite Wakefield being discredited and struck off the medical register in the UK he, and the ‘Anti-Vax’ brigade, is still having a profound impact on society, which is gradually beginning to filter down to how we manage MS. Why? The number of children receiving the MMR vaccine in...

I am alone and feeling vulnerable

Did you know that 3 out of 5 pwMS self-report being lonely? Why? The following study explores the possible causes of loneliness.  As you know MS is a very stigmatizing disease that given sufficient time, at least in the preDMT era, causes most pwMS to become disabled. Associated with the disability is well-documented unemployment, the breakdown in personal relationships, depression, anxiety...

Teaching MSers how to Fish

Did you know that CEO actually stands for Chief Energy Officer? What am I going to do with my energy? I am going to help set-up a programme to teach MSers how to fish!  My wife, who has had many subtle influences on my life, is a successful CEO with many leadership qualities I admire. One of them is that she views her role as the CEO of her charity as being that of the Chief Energy Officer...

Happy New Year: some reflections on 2018

Happy New Year! In response to a comment yesterday I produced the following overview of some of Barts-MS’ activities for 2018. It makes me very proud to be part of the team and I would like to thank them all for all their hard work and perseverance. I would like to think of 2018 as the year of the #HashTag. Some of our long-running social media campaigns have started to deliver returns on the...

#ThinkHand – taking telerehabilitation one step further

What does 2019 hold for the various Barts-MS campaigns?  We are continuing to make the case for our #ThinkHand campaign with several outputs in 2018, which are being used to support our work in this area. I am very proud that ORATORIO-HAND, a phase-3b study of ocrelizumab in PPMS, which will include patients with an EDSS of up to 8.0 and will start recruiting in the first quarter of 2019...

Swimming inhibits autoimmunity

Is swimming beneficial in MS? As part of our remit the UK government wants us to discuss animal experiments, and as this is a blog about good and bad research news, we will defend animal experimentation when it is useful. However, I think we need to be bold and say “Not in my name” when it is not.  Yes this goes against the norm on science reporting where “every thing is...

Merry Christmas

Christmas is a time for reflection and to spend it with friends and family.      #ThinkSocial   I went for a long run yesterday that allowed me to reflect on a good year for Barts-MS and for people living with multiple sclerosis (pwMS). We are making unprecedented advances in the treatment of MS. PwMS are being diagnosed earlier, treated earlier and are less disabled than before. We are seeing a...

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