“You are all aware that I ran a longish social media campaign to get MS rebranded a preventable dementia. My motivation was to get regulators to realise that early disability in MS is driven by cognitive impairment that occurs long before physical disability is noted. The hope was to get highly-effective therapies licensed first-line to allow informed pwMS to make active decisions about trying to prevent irreversible damage to their brains and acquiring irreversible cognitive deficits. Whether or not the ‘MS Preventable Dementia‘ campaign made a difference I don’t know, but alemtuzumab got a 1st-line license and the rest is history.”
“I remember presenting the ‘MS Preventable Dementia‘ campaign at the EMA MS Workshop on the 17th October 2013 (see below). I recall taking a pasting from both the regulators and some of my colleagues at this meeting. One regulator categorically denied that MS is a preventable dementia and thought classifying it as such was wrong. This particular regulator, as most neurologists, see dementia as a disease mainly of the elderly and limited to so called classic neurodegenerative diseases, e.g. Alzheimer’s disease. I have in past suggested to some of these deniers that they study the philosophy of medicine and the classification of diseases. They would then see that MS ticks all the boxes for being a potentially dementing disease. The difference between MS and say Alzheimer’s disease is that we have effective treatments for MS and if we use these treatments early and effectively we could at least delay, and hopefully, prevent irreversible cognitive impairment.”
“The problem, however, with routine cognitive assessments in NHS practice is resources; we simply don’t have the physical manpower to do routine testing. We are however, hoping to get a pilot off the ground to do cognitive testing at Barts Health. The question is would you as a person with MS want to know about your cognition? We know cognitive impairment is closely linked to accelerated brain volume loss and poorer long-term outcomes. Knowing you are in a poor prognostic group may be the trigger for choosing more effective treatment or for making difficult decisions about your life. I would appreciate it if you could complete the short survey below about routine cognitive testing; it will help us get an idea if there is an appetite out there for routine cognitive testing.”
Langdon D. A useful annual review of cognition in relapsing MS is beyond most neurologists – NO. Mult Scler. 2016 Apr 5. pii: 1352458516640610.
McNicholas & McGuigan. A useful annual review of cognition in relapsing MS is beyond most neurologists – YES. Mult Scler. 2016 Apr 5. pii: 1352458516639385.
Hutchinson M. A useful annual review of cognition in relapsing MS is beyond most neurologists – Commentary. Mult Scler. 2016 Apr 5. pii: 1352458516642624.