Last reply 1 week ago
Daily Briefing Covid-19 [26th Mar 2020]

Ciao Ciao (in solidarity with our Italian friends),

Apologies for the lateness. 3 key things have happened at Chez Shadbolt
1- It is an amazingly sunny day near Oxford (UK)
2- We went for a 10km walk by the Thames and over some hills, it was utterly lovely
3- I forgot to eat breakfast so upon getting home my big guts were eating my little ones. This meant I had to cook a massive stack of North American style pancakes, crisp up a load of streaky bacon and drench the lot in an unholy and massively unhealthy amount of proper maple syrup and blueberry syrup, both from my home country of Canada. I can hardly move and think I may throw-up 😉
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MS Stuff
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It is here – the interview with Aaron Boster MD – http://tiny.cc/MSvid3

We cover MS and Covid-19 symptoms and the importance of the rapidly growing research registers.

There is the most up-to-date drug-specific video – from Dr Boster for Shift.ms later today.

We have kind of ground to a halt about panicking over the potential effects of DMTs and MS with it being covered extensively and repeatedly on the forum here and many other places on the Internet. A good way tell is the teleconference I attended yesterday was Prof B Sharrak from Sheffield addressing the concerns for AHSCT (stem cell transplant) patients. A tiny minority of the MSers.

The remaining confusion in my humble view, entirely understandable, is from the fact that many people are unsure as the ‘General’ guidelines are just that. General. They make no allowances for any specific knowledge nor the huge range of ways that MS may affect someone nor the fact that the knowledge about the risks or otherwise about DMTs has changed markedly from immunosuppressants must equal greater danger to likey no difference in risk with a few (very few) exceptions and possibly even be helpful.

Fingolimod is even being used as an experiment to see if it aids the healing in some Covid-19 patients!

Things move fast. Government guidelines are – necessarily – a sledgehammer to crack a nut. We (the MS community) are but one of the hundreds of special interest groups. The government must take a blanket approach, it has no choice. It is u to us to navigate through it.

The words agile and responsive do not sit easily in my head with the words government, bureaucracy and the adminisphere. T’was ever thus.
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Social Things
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I hate folding. My idle PC, on the other hand, excels at it, especially the folding of proteins. Apparently. If you want to help, your PC is on, connected and idle, then check this out https://foldingathome.org/iamoneinamillion/ Do good whilst doing something else.

NHS volunteers. It seems that y’all heeded the call. Well, 1/2 a million of us did and signed up – in one day! – to help out. I maintain that most of us are pretty decent people. We think there are more twits as they are the only ones that ever make the news. If you signed up then take a hand, raise it up and reach over the opposite shoulder and pat yourself on the back. If you are missing out then sign here: https://www.goodsamapp.org/nhs

Yikes – already 1300h. Still full. Still can’t move.

You’ve got this. Take it easy.

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vixen
1 week ago

Thanks @dominics. How the blazes you are managing 10 km walks; I can but offer jealous congrats! Re Covid, I think my only existing confusion is the criteria being used to ascertain if we are/aren’t among the 12 week letter recipients; do you think the criteria varies between authorities? Will know watch the Dr Boster vid – thanks!


dominics
1 week ago

@vixen – I am extremely fortunate. Using walking poles for a bit of balance I can manage 40km in a day, if pushed.

26y in and I have always made a point of staying active. Swimming, cycling etc. Not because I have MS, I did them anyway. I enjoy doing them and am damned if I am going to stop them.

4th DMT (Rebif, Copaxone, Tecfidera and now Ocrevus) and try to stay in front of that too. Really struggle with the idea that given the choice and at no cost, why someone would choose a Ford Fiesta over a Bentley. I’d have HSCT at the drop of a hat if I could work out a way to allow the medics to tick all the boxes.

I am determined not to go down without doing everything I can. That would be a total sense of failure knowing I didn’t try hard enough, with all the tools at my disposal, to keep the bugger at bay.


lilypalooza
1 week ago

@dominics

Good going on the 10km – took the dog for a run this morning and only lasted 30mins…treadmills are definitely easier, not to mention every direction from my house is up a hill! Good to keep active and great to do something other than stress over impending catching of Covid19 😂


dominics
1 week ago

@lilypalooza we are all going to get it! Best not to get it now nor infect anyone else just now.


piper71a
1 week ago

Gotta love this guys😂. Kudos to you once more for the update. When i finish my WFH shift, I’ll check out the Aaron Boster link. Take care


dominics
1 week ago

Pleasure 😉


amala
1 week ago

I’m craving pancakes and maple syrup 🤤

I watched the interview with Dr Boster. I feel less nervous now because I convinced myself I’d be one of the 80% who’d have mild symptoms.


dominics
1 week ago

*burp* they were lush. Not a remote part of my lowish carb/sugar diet. Sometimes though my inner Canadian comes out.


lilypalooza
1 week ago

@dominics

Exactly! Keeping fitness up as much as possible so that when it hits I can fight it off as best as I can. Absolutely, I have to say one of the nicest things about the run this morning was the lack of other people and just enjoying nature, am lucky to live in the countryside. One positive to this situation is I may just start to like road/trail running plus the dog enjoys it 😊

p.s. only half canadian but what I wouldn’t give for a stack of those pancakes with maple and blueberry syrup! 😂


dominics
1 week ago

@lilypalooza

I’m half Canadian, half Brit bit have lived the majority of my life in the UK. Though, wld move back to BC in a heartbeat.


vixen
1 week ago

Now then @dominics. 50 pc Canadian you may be. BUT, your frequent mini-celebrity appearances have had me in a linguistic quandry. I’m also detecting something remotely Bristolean/gaellic.….? Or is it just because you iz clever……?


dominics
1 week ago

Nope. UK family a mix of Cambridgeshire yokel and upper middle class South Eastern UK. Canadian is West Coast.


dominics
1 week ago

Clever…I know many that would disagree.

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