In defence of the term "Smouldering MS"
I, or we, my collaborators and friends, are being taken to task for adding the word smouldering MS to the medical lexicon. Apparently, nobody likes the term. Do you agree?
MS-Selfie
MS-Selfie helps you self-manage your multiple sclerosis. MS-Selfie consists of the newsletter and the MS-Selfie microsite, which consists of curated content https://msselfie.co.uk/
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Q&A 181: Anti-CD20 therapies and arboviruses
I am also aware that many pwMS on immunosuppressive therapies develop infection anxiety and simply avoid high-risk travel. Does this apply to you?
Is the NHS working for you?
The slow and fragmented digitisation of the NHS has direct, profound implications for patient care.
Diagnosis of acute EBV infection
Diagnosing acute EBV infection is a complex process and depends on timing and the clinical context.
Q&A 180: MS prior to EBV infection
Do a quarter of people really develop MS prior to being exposed to EBV?
Q&A 179: recurrent multi-drug resistant UTIs on an anti-CD20 therapy
As your MS appears to be getting worse without obvious relapses or new MRI activity, you likely have smouldering MS and may become eligible for tolebrutinib when it gets licensed and reimbursed.
Stay Cool; Stay Safe
“36%, Europe’s share of global heat deaths, despite having just 10% of the world’s population” - scary!
Anti-EBNA-1 titres and control of EBV
People with exceptionally low anti-EBNA-1 antibody levels exhibit no detectable EBV shedding in their saliva.
Q&A 178 - Truncal posture in MS
I cannot sit up straight for one second. Unless I push hard with my elbows on my armrests, my body curls forward. Does this sound familiar?
The annual follow-up appointment
I would appreciate it if you could review version 2.0 of the self-management tool for your annual review and let me know if anything is missing and needs to be added. Thanks.