Apologies for being almost incommunicado for the last two weeks. I have been away on holiday. I tried to avoid daily work, i.e. checking and responding to emails, social media, reading medical journals, correcting manuscripts, etc., which is why I have been relatively quiet on the MS-Selfie front.
The break allowed me to read some very good books, spend needed time with my family and allow time for reflection and some deep thinking. It is clear to me that the field of MS needs a paradigm shift away from the current model if we are going to make any substantial progress in the future.
If you were in my position, i.e. an ageing academic (58 years of age) with limited productive time left as a researcher, what would you prioritise?
MS prevention - vitamin D, obesity, smoking or EBV?
Yes, I believe we can prevent people from developing MS. We now have to do trials to show this is the case.MS cure - promote the widespread adoption of IRTs (immune reconstitution therapies) early in MS?
Yes, a minority of patients with MS treated early with IRTs (alemtuzumab, cladribine or AHSCT) are cured. The problem is convincing the MS community of this fact.Smouldering MS - the processes driving worsening MS despite no evident inflammatory disease activity (NEIDA)?
Yes, the ‘real MS’ is not focal inflammatory disease activity, i.e. relapses and MRI activity, but the processes that underlie focal inflammation. We need a new treatment paradigm to tackle smouldering disease, i.e. add-on combination therapies.Holistic management of MS, i.e. marginal gains?
The elephant in the room is brain health and wellness to optimise MS outcomes. Unfortunately, most MS services only focus on MS and its complications. Do I spend time trying to get the NHS to reconfigure how we manage MS?MS self-management and revolutionising MS care?
I think we are beginning to see the self-management of MS transform MS care. MS-Selfie is part of that transformation. Do I spend my time expanding MS-Selfie and integrating it into the NHS?MS education to inspire the next generation of researchers to take up the baton and run with it?
Do I spend my time focusing on MS education, for example, starting an MS masterclass for young trainees and getting them to do the work I don’t have time for? Maybe I can start a foundation that funds research? This way, I can stay involved in MS research but get other people to do the work.
I am interested to hear your opinion on what you think my priorities should be. I simply don’t have the time and energy to do it all.
P.S. The number of people paying for subscriptions to MS-Selfie has dropped off. I assume this is because the content is not worth paying for and/or potentially because of the economic crisis. However, MS-Selfie needs resources to be a part of the MS self-management revolution (priority 5 above) and as an educational resource (priority 6 above). I simply don’t have the bandwidth to create a curated MS-Selfie microsite and design and run an MS self-management course; I have to hire professionals to do this for me, which costs money.
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription please subscribe. For active paying subscribers, thank you; your contribution is much appreciated.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry or Barts Health NHS Trust. The advice is general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional who will be able to help you.
Reflections: setting priorities for MS