ClinicSpeak: progressive MS and upper limb function

Should we target arm, swallowing and speech in progressive MS? #MSBlog #MSResearch #ClinicSpeak

"We did our 4th MS Roadshow last Saturday at the Chilterns MS Centre. The Roadshows are meetings we do outside of our annual MS Research Day. The purpose of the Roadshows are to take our research into the community. Our focus this year has been on progressive MS trials, both disease-modifying and symptomatic. The aim is to present our research and what is generally happening in the field of MS research. We actively encourage MSers to participate, or at least put themselves forward, for clinical trials. Without volunteers for clinical trials we will never move the field forward."

"At the end of the meeting one of the MSers who was in a wheelchair stated that after our presentations she felt, for the first time, that the research community was taking progressive MS seriously and that she felt confident that a breakthrough in progressive MS was just around the corner. Our presentations were the most positive she had heard in relation to progressive MS; she was convinced by our arguments that we could really do something for progressive MSers. She was in a wheelchair. She was particularly impressed that I made the statement: 'because you are in a wheelchair why shouldn't we try and delay further disease progression and protect your upper limb function and your ability to swallow and speak?'."

"This sentence subsequently bounced around inside my head all weekend. Yes, why shouldn't we try and preserve upper limb and bulbar function in wheelchair-bound MSers? If our length-dependent axonopathy hypothesis is correct and the same mechanisms are driving upper and lower limb progression why shouldn't we enrol MSers in wheelchairs and include them in trials with the aim of preserving upper limb and bulbar function? It has become very clear to me based on the comments in relation to my destigmatizing the wheelchair post that MSers need to have some hope beyond EDSS 6.5. If we exclude wheelchair users from all progressive MS trials we destroy any hope they may have of preserving their independence in the future. As a community are we prepared to simply condemn wheelchair users to the face the ravages of the disease without any hope? I therefore propose exploring whether or not we can power a trial to look at upper limb function as a primary outcome for progressive MS trials. May be we can design the trial so that we can assess upper limb function using a web-based keyboard task that MSers can complete at home? This would mean they could do most of the assessments at home and avoid, or at least reduce, tiring journeys to the trial centre."

"If you have a moment could you please complete the following survey on this issue?"

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