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6 days ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
Another positive result and new treatment for people with MS, in particular those with primary progressive MS. Today's press release shows that vidofludimus, an inhibitor of dihydroorotate dehydrogenase (DHODH), reduced 24-week confirmed disability worsening (CDW) by 20% compared to placebo and 30% in subjects with primary progressive MS (PPMS). Significantly, in the subpopulation without Gd-enhancing lesions at baseline, 24-week CDW was reduced by 29% compared to placebo.
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1 week ago | 00241-x/abstract&sz=64)
msard-journal.com | Jeannette Lechner-Scott |E. Ann Yeh |Christopher H Hawkes |Gavin Giovannoni
Get full text accessLog in, subscribe or purchase for full access. References1. Thouvenot, E. ∙ Laplaud, D. ∙ Lebrun-Frenay, C. ... D-Lay MS Investigators. High-Dose Vitamin D in Clinically Isolated Syndrome Typical of Multiple Sclerosis: The D-Lay MS Randomized Clinical TrialJAMA. 2025; 333:1413-1422 Apr 22PMID: 40063041; PMCID: PMC118945462. Butzkueven, H.
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2 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
You will have seen this morning that many news channels are reporting on a Healthwatch report (dated 01/05/2025) regarding errors in NHS medical notes.
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2 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I have recently learned about estriol use for hormone replacement (HRT) and that it is supposed to be better than estradiol for brain health. Can you tell me if this is true or not? Thank you!NOTE: General Substack newsletters and the microsite are free; only Q&A sessions are restricted to paying subscribers. I can't run and maintain the MS-Selfie microsite, so I must pay people to help me do the work.
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2 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I'm a 55-year-old male who was diagnosed in 2012. I eventually got alemtuzumab in 2017, which seems to have successfully arrested relapses, but smouldering means a variety of things are getting worse. One I'm particularly concerned about is the waning sensation in my hands, which is making handwriting, typing, and other fine motor tasks more challenging over time. I've never taken a 9-hole peg test, but I shudder at the thought of how long it would take me.
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3 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
“EVERYONE ‘operating’ in the MS medical field has FAILED. All Charlatans! I have never met a decent clinician or consultant in my experience of this b.s. World. They are just lazy paint-by-numbers, not-responsibility-TAKERS in a crumbled NHS. I am very unwell now, after having been super fit and strong. It might be the 2 years it took to send me around for a missing diagnosis that I found out myself before them.
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3 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I am attending a closed ‘Global MS Prevention Workshop’ in Lisbon. It is being sponsored and run by MS Canada and MS Australia. I am grateful and privileged to have been invited to speak and participate in this meeting. I have attended many of these types of meetings before, and little has changed. I hope this one is different. You can download the programme and my presentation for more information.
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3 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
Is multiple sclerosis a progressive, irreversible, unidirectional disease? A recent subscriber said that people with MS should expect their MS to get relentlessly worse and that it is unidirectional. Dare I disagree? After participating in the alemtuzumab CARE-MS trials, I saw many pwMS who were disabled who received alemtuzumab notice disability improvement or stabilisation, with many going into long-term remission.
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3 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
Living in poverty and experiencing socioeconomic deprivation have a substantial negative impact on the health outcomes of people with multiple sclerosis (pwMS) and others living with chronic conditions. These disadvantages are linked to faster disease progression, increased disability, reduced access to essential healthcare and support, and a lower quality of life. Studies highlight a clear association between lower socioeconomic status (SES) and a more aggressive MS disease course in pwMS.
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4 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I am a 54-year-old woman and have been living with relapsing MS since 1995, initially presenting as optic neuritis. It took 12 years before I was formally diagnosed in 2007, at which point I started interferon-beta-1a (Avonex). Over the years, I experienced two or three minor relapses (sensory symptoms) that, until 2018, had minimal impact on my daily life.
