Multiple Sclerosis Research Repository
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Welcome to the “Multiple Sclerosis Research Repository” WordPress personal website that I have created and curated as an online repository to house my collection of MS research (https://multiplesclerosisresearchrepository.wordpress.com)-Why I undertook this research: Initially I started this research to try to learn as much as I could about the different DMTs to try to help inform the best decision as to a treatment, but when I dug into the information about the DMTs, especially from the clinical trials and the FDA documents, I realized that there was not good evidence to support the efficacy of the DMTs on disease progression and especially disability accumulation, or even delaying the transition to SPMS or alleviating the SPMS disease course. The DMTs showed good evidence against the inflammatory aspects of the MS pathology, namely relapses and conventional MRI lesion activity, but yet not against progression and disability accumulation: what could explain this dissonance, I kept wondering, so I kept digging. That is when I learned about PIRA and the neurodegenerative pathologies that occur in MS, which research has evidenced occur at least partially independent of the inflammatory pathologies. I read some research showing that almost all of the progression and disability accumulation in MS was due to PIRA, not RAW (relapse-associated worsening), which made me question why so much emphasis is placed on preventing relapses in MS (such as why the primary endpoint of almost every MS DMT trial has been annualized relapse rate and continues to be this way). -Sources of research: peer-reviewed journal articles and FDA documents, primarily; some resources from Dr. Gavin Giovanonni, ECTRIMS conferences, etc; all of my research contains the citations, so it can be “fact-checked”-Main topics of research: PIRA; MS clinical-radiological paradox of MS; shortcomings and misrepresentations of and about the MS DMTs (the information comes primarily from the FDA and clinical trial documents); the role of different possible biomarkers in MS (OCT, neurofilament light, kappa free light chains, etc); the neurodegenerative pathologies of MS; grey matter pathology in MS; the debate over “inside out” or “outside in” pathology in MS; etc. -Who this research might be relevant or helpful for: Anyone with MS and anyone who cares about someone with MS who desires to learn information that isn’t “mainstream” or necessarily part of the “conventional MS narrative”-How this information can be beneficial: I believe that knowledge is power. I hope this information can be empowering to those with MS and those who care about them to make the most informed choices and risk-benefit analyses possible, especially in regards to making a decision about whether to move forward with DMT treatment or not, to be able to accurately assess both the risks and benefits as shown in the clinical trials and FDA documents
Links to Posts by Dr. Gavin Giovannoni about PIRA/Smouldering MS
https://open.substack.com/pub/gavingiovannoni/p/smouldering-ms-the-real-ms-becomes?utm_source=share&utm_medium=android&r=29mth7
https://ms-selfie.blog/tag/pira/
https://open.substack.com/pub/gavingiovannoni/p/research-big-data-and-smouldering?utm_source=share&utm_medium=android&r=29mth7
https://open.substack.com/pub/gavingiovannoni/p/ms-selfie-q-and-a-12?utm_source=share&utm_medium=android&r=29mth7
https://open.substack.com/pub/gavingiovannoni/p/principles-underpinning-the-treatment?utm_source=share&utm_medium=android&r=29mth7
https://open.substack.com/pub/gavingiovannoni/p/do-you-have-smouldering-ms?utm_source=share&utm_medium=android&r=29mth7
https://open.substack.com/pub/gavingiovannoni/p/smouldering-multiple-sclerosis-an?utm_source=share&utm_medium=android&r=29mth7
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kaylin bower
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