MS-Selfie

This Swedish study below explains why I keep repeating myself, i.e. ‘flip the pyramid’ and ‘smouldering MS is the real MS’. The Swedes have investigated how different intensities of initial MS treatments impact long-term physical disability. They compared high-efficacy therapies with standard platform treatments in over 2,500 pwMS to distinguish worsening caused by relapses (relapse-associated wor...

If you don’t have advanced MS, you may find the contents of this newsletter upsetting. It is not for everyone. Only read on if you want to know about managing advanced MS. Question I am at EDSS 8 and need to get my affairs in order. I cannot do anything really anymore, so is this the beginning of the final stages? I know you won’t sugarcoat the reply, so? I can no longer go to the toilet on my own...

I am sure many of you won’t want to know about the underbelly of living with advanced MS. As pwMS become more disabled, complications of being immobilised start to appear. The one that worries all HCPs working with patients who have MS is pressure sores or ulcers. Pressure ulcers remain a devastating clinical challenge encountered in the management of people with advanced MS. Pressure ulcers, pres...

If you have multiple sclerosis (MS) and are on chronic immunosuppression, you need to check your medical records to make sure you have had the measles vaccine as a child. Due to vaccine hesitancy, MMR (measles, mumps, and rubella) vaccine uptake has dropped considerably since the late 90’s and noughties. As a result, many countries now have both endemic and epidemic levels of measles infections. T...

In response to comments from yesterday’s podcast and newsletter , I have prepared a more detailed analysis of the issues supporting gender-specific MS services. I hope this clarifies things better. Historically, the clinical and epidemiological descriptions of MS have stressed differences between women and men with MS. This is often referred to as sexual dimorphism. MS is a disease that disproport...

Last week, a colleague sent me the publication below ( van Laar et al., 2024 ). The publication highlights that while gender equality efforts traditionally focus on women, including men is essential for achieving lasting social progress. The authors argue that restrictive gender roles significantly damage men’s physical and mental health by discouraging help-seeking and rewarding risky behaviours....

Question Prof G, could you do an article on what is going on with tolebrutinib in the States? Having a hard time processing the FDA rejection letter. Not sure what this means for the field. 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 assist me. If pe...

I keep getting pushback from people, including many colleagues, when I claim that the Epstein-Barr virus (EBV) is the cause of MS . This claim is based on a large body of epidemiological studies over the last 20 years and on applying causation theory. The most important observation supporting my claim is that people who are EBV-seronegative are protected from getting MS. In other words, EBV is nec...

Several subscribers have asked me to comment on the new classification system for multiple sclerosis (MS) published last month in the journal Brain, which uses MRI and serum neurofilament levels. One person asked whether this means MS is now two diseases rather than one. Other commentators have hinted that this will change how we diagnose, treat and manage MS. In short, none of these claims are su...

Sylvia found us, and that is the primary learning point of this case study. Sylvia was diagnosed with MS two months into an internship with an investment bank in London. She probably had an episode of optic neuritis when she was 17, whilst studying for her A-levels. She had transient blurring of vision in her right eye, accompanied by a mild headache behind the eye. Her vision was minimally affect...

24th December 2025, Byfield, Northamptonshire Mary lives alone. Her husband has long departed; he filed for a divorce and left the marital home more than a decade ago when Mary had to stop working. Mary has two daughters who have both fledged. Charlotte, her oldest, works in London and is living with her boyfriend. Elizabeth, the youngest, is currently living and working in Sydney, Australia, afte...

If you are a regular MS-Selfie reader, you will know that I am a proponent of the Epstein-Barr virus (EBV) theory of multiple sclerosis (MS). I am convinced that EBV is the cause of MS. EBV is necessary but insufficient for the development of MS. Put simply, people who are EBV negative don’t get MS. This observation underlies the hypothesis that an EBV vaccine can prevent MS. I am happy to report...

People with MS can report alterations of consciousness, self-perception, and reality testing. Among these neuropsychiatric phenomena, dissociative states—ranging from transient feelings of unreality to chronic depersonalisation-derealization disorder (DPDR) and non-epileptic seizures (NES) - can occur in pwMS and are often undiagnosed. PwMS have an elevated risk of experiencing dissociative phenom...

I just received a howler of an email from an MS-Selfie reader accusing me of neglecting people with primary progressive MS (pwPPMS) and of being a charlatan for running a subscription model. They concluded by asking me to unsubscribe them from MS-Selfie to stop receiving future emails. So the questions I have for you are, do you think I am neglecting people with primary progressive MS? What additi...

I have just returned from a lecture tour of Canada, which included four cities in four days and 12 speaking arrangements. My host's hospitality and kindness were exceptional. Thank you, thank you. I felt appreciated. I have previously done lecture tours of Canada, Australia, and India. People, including my wife, often ask why I accept these invitations, as they are gruelling. I suspect it is flatt...

Do we need to challenge the dogma that traditional MRI is good enough to monitor MS? Our current treatment target in MS is no evident inflammatory disease activity or NEIDA . In other words, there should be no relapses or focal MRI activity (new or expanding T2 lesions or Gd-enhancing T1 lesions). Question : Is the NEIDA treatment target appropriate? I don’t think so for several reasons. Not all r...

A fact worth knowing Did you know that people with MS who have a vascular comorbidity (smoking, obesity, hypercholesterolemia, hyperlipidemia, hypertension and/or established vascular disease) need to use a walking stick about six years earlier than people who don’t have a vascular comorbidity? Now that you know this, you can’t unlearn it, so you need to do something about it. The holistic managem...

The current dogma that is emerging in the field of immunology and multiple sclerosis (MS) is that a prophylactic EBV vaccine will create an older population of individuals susceptible to later wild-type EBV infection as vaccine immunity wanes. Therefore, instead of reducing the risk of MS, the vaccine will increase the risk. I don’t necessarily agree with this position. The arguments supporting th...

My prediction is that we will prevent multiple sclerosis (MS) by accident, i.e. as a secondary outcome to a broader public health intervention. Many stakeholders think we can run a randomised controlled EBV vaccination trial in a high-risk cohort to prevent MS. This is not feasible. Firstly, the incidence of MS is relatively low; therefore, you would need a large study (approximately 10,000 EBV-ne...

I have written about uncertainty and how it affects the minds of people with chronic diseases such as MS (please see ‘Uncertainty associated with MS: are you comfortable with it?’, 20-Apr-2024 ). Uncertainty has a dark underbelly, and unless you can come to terms with it, it will paralyse you with rumination and intrusive thoughts about what life would be like if only this or that happened. I have...

Stopping by Woods on a Snowy Eveni ng by Robert Frost, 1923 Whose woods these are I think I know. His house is in the village though; He will not see me stopping here To watch his woods fill up with snow. My little horse must think it queer To stop without a farmhouse near Between the woods and frozen lake The darkest evening of the year. He gives his harness bells a shake To ask if there is some...

I attended a meeting last week where a KOL (key opinion leader) in the field of multiple sclerosis (MS) made the point that relapses and focal MRI activity (Gd-enhancing and new or enlarging T2 lesions) are MS, i.e. they are the disease and that suppressing relapses and MRI activity is what we aim to achieve with our disease-modifying therapies (DMTs). Do you agree? I have spent the better part of...

I was referred to a patient from another centre as he had relocated to East London. He had had multiple sclerosis (MS) for over 20 years and was interferon-beta-1a (Avonex). He was pretty disabled (EDSS 5.5), with an unsteady gait, lower leg weakness, slurred speech and cognitive impairment. He needed a walking aid but was determined to get by without one. He was divorced and lived alone. He had a...

This is a free preview of a paid episode. To hear more, visit gavingiovannoni.substack.com Case I am a 27-year-old female student with relapsing-remitting MS treated with oral cladribine four years ago. I recently graduated from university with a BSc. I am currently studying for a master's. I have remained stable on MRI scans but continue to have difficulty walking. I understand that cladribine is...

There are too many ECTRIMS 2024 highlights to cover in one newsletter. However, the top of the list of highlights was the positive tolebrutinib results in non-relapsing (inactive) secondary progressive MS. At the bottom was the negative, but not unexpected, simvastatin trial in SPMS. Tolebrutinib  Tolebrutinib, a second-generation BTK inhibitor (BTKi), has a dual mode of action in MS. It inhibits...