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Saloua Mrabet – 2022 MENACTRIMS fellow

Hello !!                                                                                                I am Saloua Mrabet, the new MENACTRIMS fellow. I am an MSologist from Tunis, Tunisia. I am interested in Multiple Sclerosis and related inflammatory diseases and especially some hot topics in this field: HSCT, highly active DMT, Ethnicity and MS, genetics of MS and Women’s Issues in MS.  Happy...

Differently-abled

Dear Dr Giovannoni, I am so sorry to hear about the unfortunate accident you had a year ago.  I hope your health is heading in the right direction. I read with a lot of interest your article reflecting on healthcare in England after your personal experience. . I thought about sharing the video below with you. It describes the care of patients with MS and advanced disability in the US. From A to Z...

Disclosure

Disclosure seems to be the theme of many MS strands at the moment, so I thought I’d add my two-penn’orth. My only advantage is greater hindsight as I was diagnosed with MS 28y ago. More than half my life has been lived with the diagnosis and it is fair to say that it has influenced every single aspect of my life. Recently, I started to reflect on what that has meant.  Some insights are very...

WHAT REALLY AFFECTS QUALITY OF LIFE IN MS?

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...

Patient involvement, or not

Where is the patient involvement in designing the DMT guidelines for Multiple Sclerosis? According to the NHS: ‘People and communities are important to us because they help us improve all aspects of health care, including patient safety, patient experience and health outcomes – giving people the power to live healthier lives.’   The NHS England algorithm for using DMT’s says: ‘The...

Help us understand more about medication adherence in MS

Taking your meds on schedule can be a challenge for people with MS. This is true of all people living with a chronic disease, but it might be particularly hard for PwMS. This could be because MS is a very long disease requiring medication over many years. There is also a lot of uncertainty and it can be tough to be reminded about MS every time you take your meds. As you know, if meds are not...

To be vaccinated or not?

The following is a preliminary summary of the UK MS Register’s survey to establish how people with MS (pwMS) viewed the arrival of the COVID-19 vaccinations. Importantly, the data shows that despite being quite vocal the anti-vaccine message doesn’t seem to be having the same effect in the UK as it is in other countries. Fewer than 6% of respondents said they would probably or...

Guest Post: Working with Multiple Sclerosis During Covid-19

People are usually diagnosed with Multiple Sclerosis (MS) between 20 to 40 years of age, the prime working years of an adult. However, fewer than 50% of people with MS remain at work after 10 years of diagnosis, decreasing to 20-40% after 15 years. Apart from the number of people that become unemployed after a diagnosis of MS, there is also a large proportion of people that need to reduce their...

Guestpost: Neurofilaments vs. ‘The straight-line instinct’!

Biography I am new to the blog and Barts-MS. I am Dr. Ide Smets and I am an ECTRIMS clinical fellow working in the Barts-MS team. My country of origin is Belgium which is famous for having six governments, for having a national dish that is claimed by another country (French Fries) and for going wild about cyclocross (bring it on Chris Froome ;-)). In 2018, I obtained my PhD in biomedical...

Crip Camp: the Obamas documentary on disability

By Rachel Horne I know this blog has lately been filled with updates on COVID-19 and MS – and rightly so. However, if you are at home – and looking for something hopeful to watch during these overwhelming times – try this new award-winning documentary Crip Camp: A Disability Revolution – which was executive produced by Barack and Michelle Obama. The documentary focuses on...

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