Last reply 2 months ago
Daily Briefing Covid-19 [23th Mar 2020]

Well Howdy,

Apols for the delay. I ain’t being paid and had a lie-in on fresh sheets. If you don’t get it then I fear you never will. Fresh. Bedlinen. I am being stupid because, frankly, the entire world is barmy at the moment. Please indulge me.
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MS News
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I forget that unlike the enlightened members of this forum and the Neuro community on Twitter ( #MSCOVID19 ) many hospitals and patients are just followers, not active news-gatherers and learners. As a result, the advice really lags and is understandably quite alarming and confusing for many. Hell, I am immersed in what is going on (I find it simply fascinating how people react, what they say, how it affects others etc – a more meta-level of fascination for me) and I think it is baffling at times.

MS is not ‘just’ MS. It is a many splendoured thing with many permutations. Just saying MS in and of itself is a risk factor is a classic sledgehammer to crack a nut analogy. It is close to calling this the ‘Chinese Virus ‘ and then using that brilliant phrasing (we all know to whom I am referring) to marginalise people that look vaguely Chinese. It is bonkers.

What is does mean is that you will not receive hard and fast tailored directives. You’ll need to assess your MS and your drugs against the evidence and lack of evidence. A simply superb place to start for the basics is http://www.ms-selfie.com

This need to choose and decide undoubtedly shifts the burden to the individual. Something not everyone is comfortable with nor able to do. This loops around to the fact that MS covers a multitude of situations. If you are not up to it then DO NOT feel bad. Go with your gut and if your gut is telling you to take third party advice then do that. Know that it will lack detail and nuance.

FYI – reliable third-party advice is not your pals, Facebook etc. It is the government and it is a blunt instrument. There is no time for nuance.

Just got off the phone with my MS Nurse in Oxford (a friend too) for a quick, “how are you doing, what is going on?” chat and he tells me that Northampton and Milton Keynes are closing in the week and Manchester is already closed. Expect this to be reflected nationwide in no time.

Go to http://www.ms-selfie.com with your questions. A ton are answered there and Gavin and his team are taking their own time to answer reader-submitted (it could be you) questions. It is a patient site, not a doctor site that patients hang around on.

Do take a few mins of your time to help here. https://multiple-sclerosis-research.org/2020/03/guest-post-dr-richard-nicholas/

Why are we all being told to stay apart? https://twitter.com/HuwDav/status/1241806912049549313?ref_src=twsrc%5Etfw

We will be doing a short interview with Richard Nicholas next week as this is crucial for us, the patients.

Twitter – something coming to its own as a useful tool and not just a place for morons to congregate to shout half-truths at one another. https://multiple-sclerosis-research.org/2020/03/twitter-is-where-all-mscovid19-action-is-happening/

If you want a real combo of shock/horror/dark humour then follow @realDonaldTrump I don’t think it is possible to feed his ego anymore. His mad shouty pronouncements aren’t ageing well. His band of Twitter sycophants is astonishing. @amala – if you want to study the language of a tribe, this is another rich and terrifying seam!

FRAUD – the nasty bastards are at it already. There is a message going around saying the UK gov is offering £458 to all the people. All you need to do is click the link. I haven’t but know that it will ask for financial details that you should NEVER share. Don’t fall for scams. If it sounds too good to be true it probably is.

Usual stuff – This will pass. Having MS is not a death sentence. It seems that you are likely at no greater risk (the DMT may even help!) all except people who are within a 6 month window of HSCT or alemtuzumab (Lemtrada).

Wash. Your. Hands.

Stay at home, a usual thing with MS for many of us!
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Smile. Don’t let the bastards grind you down – Illegitimi non carborundum.

You’ve got this.

And remember https://www.youtube.com/watch?v=Ls_hnYpT_2s

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highlander
2 months ago

@dominics
Well said….👏


dominics
2 months ago

Thanks, @highlander


amala
2 months ago

Thank you, Dominic. Good idea, but I don’t think I have the mental energy to listen to him. 🙂


stumbler
2 months ago

Thanks. @dominics .


watsoncraig
2 months ago

👏👏👏


dominics
2 months ago

@amala I know what you mean. I meant from an academic observation perspective. Not actually listening to them. Then you’ll want to slit your own throat.


amala
2 months ago

true 😂


itsmewithms
2 months ago

Even though you aren’t in the US it seems like you have captured our political scene perfectly ;-0 a total and complete idiot is in charge. Thankfully we have a great medical system that knows to ignore him and is trying to compensate.

The cases in my state are above the global averages for increases and the reported numbers are not keeping up with the cases even I know about as we have had local alerts on cases of kids that took school spring break trips before any warnings came from the government. I could see it coming but they were slow to respond so the trips were done. Regardless we can’t stop this beast…just trying to slow it down so we stand a chance.

We’ll see if I get a call from my Neuro…supposed to have my labs done next Wed for an Apr 16 Ocrevus infusion…we’ll see.


dominics
2 months ago

Fingers crossed.


amala
2 months ago

How often do you speak with your MS nurse? What do I do when my MS nurse is, understandably of course, busy and I can’t reach my doctor?


dominics
2 months ago

He is a friend. Bit different.

Because of the change to telemedicine style approach this site http://www.ms-selfie.com is an attempt to answer many questions and give you a portal to ask and have answers to your questions.

For now – expect turmoil as different teams handle it differently. Don’t get stressed of it isn’t how it was. It won’t be how it was for quite some time.


itsmewithms
2 months ago

Has anything been locked in with Dr Boster?


amala
2 months ago

I need a letter for my uni from my doctor. Write me one.

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