In this episode, we hear from neurologist Lindsay Tetreault from NYU. Lindsay has been leading the work of the RECODE-DCM Diagnostic Criteria incubator, tackling the all-important question of how to provide a timely, accurate and reliable diagnosis of DCM. Voicing the concerns of individuals living with DCM, Iwan reflects on the profound importance of shortening the time to diagnosis; and Ben explains why the combined perspectives of the multidisciplinary RECODE-DCM network are key to unlocking this research priority.

Myelopathy Matters is back; into its four year. Ben is joined by Liz Roberts, Myelopathy.org’s programme manager for RECODE DCM. RECODE DCM is the charity’s new myelopathy ‘think tank’, creating an international and multidisciplinary ecosystem, working alongside those living with myelopathy, to accelerate new discoveries and ensure the enter the clinic. We hear from Aria Nouri, Surgeon Scientist from Geneva and chair of a RECODE DCM international working group looking at the onset of DCM (the Natural History) and what that means for quality care today.

It’s Iwan’s turn to pick a favourite from the archives; we return to 2021 when Ben spoke to Prof Abdul Lalkhen following the release of his book “Pain and the feeling brain”. Abdul is a Pain Physician from Manchester, and helps to unlock the basis for pain and how it applies to myelopathy. As Iwan attests, understanding is a foundation of taking control. Pain is a much under appreciated consequence of myelopathy, and we are delighted Abdul has since joined the scientific advisory board for Myelopathy.org. We look forward to tackling this issue further.

For the first or two festive specials, Ben picks one of his favourite interviews from the last four years, the story of ajourney from diagnosis through treatment through the eyes of the person with myelopathy (Daniel Simpson) and his surgeon (Dr James Harrop, Thomas Jefferson University Hospital).

Iwan and Ben are joined by Dr Maryse Fortin, Physiotherapist and Clinical Researcher at Concordia University, Canada to hear about how she has been using MRI to characterise the shape and make up of neck muscles in people with DCM. Maryse shares her early findings and talks about how her group are building on this, to explore how they technique could inform care.

Ben and Iwan are joined by Dr Mark Kotter Chief Investigator of RECEDE-Myelopathy, the first drug trial testing with a medicine called Ibudilast can help repair the spinal cord after surgery. Dr Kazuko Matsuda from Medinovca, the pharmaceutical company behind the drug, explains the mechanism and wider opportunities.

Iwan takes charge of the podcast this month, as he interviews Ben Davies about MoveMed, a mobile monitoring system for neuromuscular disease he has been developing. Ben is joined by Alvaro Yanez, a co-developer, to describe the origins of MoveMed; why it was developed and what are the next steps towards clinical care. The team advertise a new online study, with collaborators from the University of Cambridge called EMPOWER, which offers people with a neurological condition the opportunity to test, provide feedback and help further refine MoveMed. Further information can be found at the study website: https://movemed.io/empower

Iwan and Ben are joined by Prof Chad Cook from Duke University, to understand a new concept of ‘High Impact Chronic Pain’, and how both striking commonly it is in DCM, but promisingly often responsive to surgical treatment. Chad shares his perspectives on the challenges of diagnosing DCM and where we must now take pain research in DCM.

Ben and Iwan speak to Dr Konstantinos Margetis, a Spine Surgeon at Mount Sinai Hospital New York and Dr Carl Zipser, a Neurologist at Balgrist University Switzerland, members of the AO Spine RECODE-DCM Diagnostic Criteria Incubator, a group working to produce the first diagnostic criteria for DCM.

Should surgery from the back of the neck include metalwork (‘instrumented fusion’)?

Today there is widespread variation in practice: if you are treated in North America you are almost guaranteed to have fusion, whereas in Europe it’s about 50/50. Ben and Iwan are joined by Dr Anna MacDowall, a Spine Surgeon from Sweden, to discuss why. Anna outlines her new trial ‘MyRanC’ and Ben the UK trial NIHR POLYFIX-DCM, both hoping to provide definitive answers to this question through randomised controlled trials.