At last week's ECTRIMS we took a variety of approaches to highlight upper limb function and the fact that pwMS who have limited, or no, lower limb function are hardly ever considered for DMT trials. You've read about our cardboard 9-hole-peg-test, the hand made poster I presented in the far corner of the poster hall (nevertheless visible due to helium baloons reporting the key finding - 95% of pwMS want pwMS in wheelchairs to be included in trials), and the sudden interest from industry in upper limb function, propelled by the results of the ORATORIO and ASCEND studies.
A further approach was staging a 'burning debate' for which I stepped into the ring with Professor Patricia Coyle from Stonybrook, NY to discuss the motion, that pwMS in wheelchairs should indeed be included in DMT trials. Whilst this may appear like a home run for readers of this blog, the debate was more controversial. I still won, though not by a margin of 95:5...
Here are my slides:
And here's a graphic from Maria Patestas' & Leslie Gartner's recent edition of their textbook of neuroanatomy highlighting the uneven distribution of cortico-spinal (= motor) tracts along the spinal cord. In my view this is an important factor to explain the heterogenous distribution of disability affecting the lower and upper limbs in people with chronic deteriorating ('progressive') MS.
Where there are more fibres, more function can be preserved. Industry and investigators need to step up, and stop giving up, trying to modify MS even when lower limb function is essentially lost - #ThinkHand !
CoI: I have been the local PI at BartsMS of the INFORMS and ORATORIO studies, and am keen to get a trial for people with EDSS >6 underway.