CategoryLifestyle and self-management

Does MS exile you from the everyday of life?

Barts-MS rose-tinted-odometer: ★★★★★ (Sunday or Summer orange #f99f00) Exercise has emerged as a safe, effective, low-cost, non-pharmacological intervention for managing disability experienced by pwMS. Despite the evidence, it is the most under-prescribed and under-utilised disease-modifying therapy we have at our disposal.  Exercise promotes improvements in aerobic capacity, muscular strength...

Buyer Beware!

A few years ago I came up with the term of mushroom food to reflect SH1 from Bulls to say that what was written was probably not correct. This morning someone posted a web site which states: “COMPLETELY OVERCOMING AND GETTING RID OF MS IS POSSIBLE NOW“ They aim to sell you mushroom extract and other things….a mix of loads of differnt herbs including maca root. Is this some weird...

To all MS earthlings: the DMT tool is ready for take-off!

Elon Musk has not been able to reach Mars yet but we have been able to officially launch the ‘DMT tool’ on the clinicspeak website! On April 29th, we invited all readers of The MS blog to share their opinions about our ‘DMT tool’. This online web tool was designed to help pwMS select a disease-modifying treatment that matches with their lifestyle and is fit for the literal and figurative long run...

73 tomorrow – some achievement

Barts-MS rose-tinted-odometer: ★★★★★ (Today’s colours are NHS blue & yellow #005EB8 & #FAE100) Tomorrow the NHS turns 73. If you love the NHS and want to give it and its staff a present please have your COVID-19 vaccine. Barts Health NHS Trust and many other NHS services are running walk-in vaccine centres. 📣Roll-up, roll-up! Or should we say ‘walk-in, walk-in’! 🚶🏽 🚶🏼‍♀️ 🚶🏿‍♀️ 🚶...

Obesity

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...

Ask not

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...

It’s a fine line

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...

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...

Want a full or half dose?….Does it matter? Stop eating too much.

Yesterday, we had the online challenge from ProfG about whether MD is only interested in targeting relapse and not the real MS. I was asking about the interval between dosing with ocrelizumab and questioning how much more information we need to know that simply dosing at 6 months was more than is needed for many people. This is based on the idea that cells within the memory B cell pool are...

Disrupt the Status Quo

Barts-MS rose-tinted-odometer: ★★★★★ (seeing turquoise; creative turquoise Friday) She was 42 years of age and had had MS for 16 years. After a relapse in 2016, she was switched from interferon-beta to fingolimod. Despite being NEDA-2 ( no relapses or focal MRI activity) since starting fingolimod her disability has worsened with her EDSS going from 4.5 (walking unaided for more than 300m) to 6.0...

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