Since being hit by a motorbike travelling at high speed and nearly losing my life or independence I now have personal experience of the value of physical neurorehabilitation. When I say #UseItOrLoseIt I really mean it. So if you have more advanced MS and are using a walking stick (EDSS 6.0) we want you to enrol in a #CitizenScience type study in which we are testing a new hand and arm activity...
Cytomegalovirus (CMV) is related to the herpes virus that causes cold sores and chick pox. It gets its name from making cells swell/go big. Like EBV Once you have the virus, it stays in your body for the rest of your life. Your immune system usually controls the virus and most people do not realise they have it. But CMV can cause serious health problems in some babies who get the virus before...
Barts-MS rose-tinted-odometer: ★★★ (a dark blue Saturday; a chastised weekend warrior #00008b ) I was accused this week by some commentators on social media for blaming, and by implication shaming, people with MS about lifestyle factors that may impact the long term outcome of their MS. One person said, “stop pushing ‘lifestyle changes’ code for lose weight on people as a fix...
Barts-MS rose-tinted-odometer: ★★★★★ (aquamarine on a very rainy Friday in London, #00FFBF) I recently had a patient of mine who has been desperate to be treated with alemtuzumab actually ask if he can change his mind and rather be referred for AHSCT (autologous hematopoietic stem cell transplantation). Why? Because the chances of being put into long term remission, and hence potentially...
Barts-MS rose-tinted-odometer: ★ (Blue Thursday #000080) Where are all the new MS patients gone? We have national data showing that there has been a 30% fall in the number of new patients with MS starting on disease-modifying therapies (DMTs) during the COVID-19 pandemic. Where are these patients? I suspect due to the reconfiguration of the NHS because of COVID-19 many of these patients have yet...
So in the race to get there quickly, we are seeing the case reports surface of people on ocrelizumab, not developing an antibody response. Below, we see a paper of 4 people…and they report “the first data“..which as ever is never the first data….They say the response is blunted…then say “data are urgently needed to confirm and expand these preliminary...
Barts-MS rose-tinted-odometer: ★★★★ (black&white) I once proposed the question, “ask not what your healthcare professional (HCP) or MS research community can do for you, but what you can do for yourself?” and had quite a lot of pushback from some readers. Why? I started developing this diagram more than a decade ago summarising the holistic management of MS. What I mean by this is that if...
After this weekends post you said “How much more “hit it hard and early” evidence do we need before neuros actually begin to adopt this and abandon the escalation strategy?“ I suspect abit more evidence, which they need to read However, one option could be to keep the escalation approach and just avoid using the CRAB drugs etc. The advantage of early effective treatment has been shown...
SIZOMUS is a short name for “Safety of IxaZOmib targeting plasma cells in MUltiple Sclerosis” I first became the study Clinical Research Fellow on the “SIZOMUS” clinical trail last year. Instantly my brain filled up with questions. I thought I’d go straight to the horse’s mouth for the answers and sought out the two lead study investigators – Prof...
Barts-MS rose-tinted-odometer: ★★ (Monday feels like an orange day; an orange cocktail day) “I can’t wait for the next MS breakthrough; it will take 10-15 years to reach the clinic. I have smouldering MS and I need to do something about it now. Tell me Gavin what would you do if you were in my situation ?” PwMS I have just had a call with a person with MS who I know very well. This person is not...
Results from the Trajectories of Outcome in Neurological Conditions (TONiC) study in MS have just been published – “Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy”. If you want to read and keep a copy of the paper, until 1 July 2021 you can read or download it for free from this, link without any need to register or pay (thank you to Journal of...