Unless I am travelling a typical Friday night is a take-away pizza, a bottle of good quality wine, watching ‘Have I got news for You’ and an early night with the latest issue of the Economist. Last night was no different except we ditched the pizza and went for a vegetarian curry. We are trying to reduce our red, and processed, meat intake based on the latest data that was published in the BMJ a few week’s ago. I am also currently reading ‘Homo Deus: A Brief History of Tomorrow‘ by Yuval Noah Harari and the section on how we are treating our domesticated farm animals is enough to make anyone vegetarian. If you have the time to read I would highly recommend this book; it is a wake-up call for Homo sapiens to get their act together.
Last night, however, I had difficult unwinding due to the germ of an idea occupying my thoughts. I had just finished running one of our Barts-MS 2-day teaching courses, or MS Preceptorships, and it struck me how important the social interactions were for patients who are on natalizumab. As you know if you are on natalizumab you have to come up for monthly infusions, which typically happen in an infusion suite in which several patients are receiving their natalizumab at the same time. This allows fellow patients to speak to each other, form friendships, engage in each other problems and help each other with the management of their MS. I am aware of several patients forming deep and lasting friendships that extend beyond the infusion unit. Some arrange to socialise outside the hospital, have dinner together and invite each other to weddings and special events. I am not aware of any marriages yet, but I suspect there may be several natalizumab-weddings in the world. It is not uncommon that if one patient delays their infusion by week the others in the group want to do so as well. Occasionally when one person in the group comes off natalizumab the others in the group go into mourning. Thankfully we have not had a case of PML yet, within our unit, but I could imagine the devastating effect a death might have on the group. What is clear is that people with MS on natalizumab value these relationships and the support and help they receive from their fellow MSers.
These observations are a reminder that we are social animals and we like to be part of a group and to belong. Most of our healthcare is based on keeping people with diseases apart. If we can make medicine, and in this context MS care, more social we will almost certainly improve outcomes. The most used Apps on the web are social Apps. Can we learn from the tech industry and create a social app that will allow people with MS to interact with each other and their healthcare professionals to improve outcomes? This is the challenge I have set myself. The blog is not the platform for this; the blogger software is not designed to be social in the way it would need to be. Could we use Google+, Facebook or WhatsApp to do this? The problem is the curation of the content and allowing new users to navigate the platform and to find friends and to interact with each other in private or in the open.
Etemadi et al. Mortality from different causes associated with meat, heme iron, nitrates, and nitrites in the NIH-AARP Diet and Health Study: population based cohort study. BMJ. 2017 May 9;357:j1957. doi: 10.1136/bmj.j1957.
Objective: To determine the association of different types of meat intake and meat associated compounds with overall and cause specific mortality.