Last reply 2 months ago
Daily Briefing Covid-19 [20th Mar 2020]

Morning folks,

Another day of splendid isolation in Shadbolt Towers awaits. Thankfully, I have the enforced long-term company of the delightfully cheerful (so far) Mrs Shadbolt.

This update will be more MS and less of me making sideswipes at the Buffoon and the Orange Genius. I think we all realise that we have managed to elect the two people who have the least utility possible in a crisis.
———-
MS NEWS
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Interview 2 with Prof Gavin Giovannoni was done yesterday. Fascinating stuff came out of it and it is probably going to be published (Dropped is the new hipster term, apparently) later today.

The Main Takeaways:

Your MS service is changing. A lot and soon. Prof G himself expects to be told by his boss to report for duty in the full spaceman get up and start doing critical care asap. I was talking to my nurse 2 days ago and he said similar. The atmosphere in the hospitals is a mixture of anticipation/the calm before the storm/the lull before the battle (insert chosen metaphor here) type thing.

Certain essential things like must-do infusions, monitoring of bloods (you may hear it referred to as pharmacovigilance – a fancy way of saying ‘keep an eye on things’) are being moved to different locations that don’t have an A+E and are not going to be hot spots for risk.

The de-risking strategy is much wider and the telephone will become the primary tool for first line, non-urgent healthcare.

Personally, I think there are a significant amount of people out there – MS or whatever – where the idea that their needs have suddenly tumbled into a back-seat hasn’t really kicked-in. Our NHS does not have any over-capacity. Indeed, quite the opposite. Everyone who remembers how to take a pulse and do CPR is being redeployed to the front lines. There is a genuine and honestly held belief that we are going to go “Full-Italy” in a matter of days.

If you do not appear that you are going to die without immediate medical intervention then you will get the advice to stay home, take paracetamol, drink plenty of fluids (not malt-whisky @highlander. Wrong type of fluid) and rest.

Enough of the Doom & Gloom though. It is looking increasingly like that MS and being on a DMT – in regards to Covid-19 – may be a good thing.

If you have MS but for whatever reason you are not on a DMT then your risks are in line with everyone else regarding Covid-19. You are no better or no worse off. It is your own health and the sate of play at chez nous that matters.

If you get Covid-19 (and it is likely that most of us will at some point) then it appears that the real issues come from when the body’s immune response goes too far in the wrong direction. Auto-immune damage. from an over-active immune system. Something we are all v. familiar with!

If you are on the 1st generation old school therapies of beta-interferon (Rebif) or glatiramer acetate (Copaxone) then although they are NOT immunosuppressants they have a mild immunmodulatory effect and may help to mitigate the body’s overreaction.

If you are a 2nd or 3rd Gen drug – see this list here: https://tinyurl.com/uj84qsb ( @sfrox was right on this yesterday – good spot!) many of them are better immunosuppressants which seems to be a *good thing* in so far as they help dampen down the body’s overreaction to the virus.

Lymphocytes are a thing. Gavin explains the levels in the forthcoming video which will be on the forum as well as all the other social media channels.

NONE of this is certain. More and more anecdotal reports (Twitter #MSCOVID19 ) are surfacing pf patients on the entire spectrum of meds catching Covid-19 and doing no worse than similar people that are not on a DMT or have MS
_
MS itself does not make you more susceptible. Not washing your hands, not social distancing, carrying on as normal does make you more susceptible and also indicates that you aren’t that bothered being a person who spreads it about. I have had to have strong conversations (along with my brother who is a medical professional) with our parents. We are staggered because they are really laissez-faire. Not because we are moralising finger-waggers but because you only need to see what has happened in Italy. The Italians are pleading with us not to make the same mistakes they did and restrict movement to essential workers only as soon as possible. My mum has a gardening business in BC (Canada) and they are like we were a fortnight ago. It’ll all blow over. I did a bit of math, pointed out their ratio of critical care beds to the population is not sufficient if it goes mad but it falls on deaf ears.

I am quite frustrated. It feels like trying to reason with a Donald Trump/Nigel Farage supporter and I am reminded of the phrase, “Never argue with an idiot. They will drag you down to their level and beat you with experience.”

I guess that the vast majority of us in the MS community are a little more sensitised so see things through a more up-to-date lens. Maybe I’m just Chicken Little? Though, based on the math and the evidence I don’t think so.

Government type news?

More of the same in the UK. No major changes. Yes, they promise to throw money at this. No, whatever the Buffoon says, it will not be sent packing in 12 weeks. Yes, you need to severely restrict your movements and contact. Severely. Think punch and not tickle.The supermarkets are getting on it with special hours for the elderly and vulnerable and rationing of essentials.

People are AWESOME

I love the stories coming out of random acts of kindness and thoughtfulness. The mad sweary old ladies doing Catherine Tate style rants to camera (see Twitter for many funny memes) and recalling WW2, there are entire hashtags devoted to the Isolation Olympics with amusing videos of creative ways to spend your time in lockdown.

We’ve got this people. MS means that we are used to isolation, not going out, not seeing all the people we want, being on drugs that may help us in the face of Covid-19.

LINKS

All this not technical enough for you? Fear not -an hour long medical briefing here: https://multiplesclerosisacademy.org/2020/03/19/webinar-prof-giovannoni-managing-ms-remotely-during-the-covid-19-pandemic/

In light of the fact that MS services will not be as easily accessible, Prof G has just whipped up (who the hell just whips up a website in a day? Really, who does this?) a fantastic website for MS patients.

THIS IS A MUST READ – https://sites.google.com/giovannoni.net/clinicspeak-dmt/home – comments are welcome. To the website, not me!

A few funny pics – https://www.thepoke.co.uk/2020/03/18/simply-9-funny-pictures-stockpiling-self-isolation-make-day-better/

Sad that your favourite festival is cancelled? https://www.facebook.com/ItsGoneViralOfficial/videos/220295729338859/?__so__=permalink&__rv__=related_videos


Keep Smiling. Keep Buggering On. This too will pass.

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jojok
2 months ago

Thank you for my early morning pep talk @dominics – brilliant.

Only disappointing point was your clarification of “fluids” – think I may have been going wrong there…!

Cheers!


dominics
2 months ago

@jojok – sorry to disappoint re fluids. I have some particularly nice Bourbon that, if it all goes pear shaped, I will try and disinfect my throat with.

In other news – if you don’t ask, you don’t get. I asked Dr Aaron Boster to talk with Shift.ms and share another perspective on the COVID-19 madness. He said yes. I am interviewing him middle of next week so expect to see that video late next week.

FOMO – fear of missing out. We have been contacted by the UK MS-Register to interview their medical lead. If you haven’t signed up to the register then go and have a hard look at yourself in the mirror and repeat ‘shame, shame, shame’ 🙂 If you were wondering what I am on about, sign up and do your bit for the entire MS community. https://ukmsregister.org/


jojok
2 months ago

@dominics Wow! Brilliant coup getting Dr Boster interview – look forward to hearing what he has to say.

No FOMO here! Looked up the link you gave me yesterday and am now fully signed up on MS-Register. Thank you for pointing it out – I had never heard of it (still v new to this whole new MS world).

At what time is it prudent to start throat disinfection do we think…? 🤔🤣


dominics
2 months ago

@jojok As my Mother in Law – when ambushed with a pre 6pm G+T – is fond of remarking. It is 6 o’clock somewhere, as she takes another sustaining draught of her medicine.


vixen
2 months ago

@dominics, ‘Buffoon and the Orange Genius’, excellent! Yes, great that you’ve procured the great Dr Boster. Yes, the advice on Covid and DMDs has been through the wringer and out again, to the more positive, over the last few weeks. I’m already a bit anxious; will there be an update at the weekend from Shadbolt Towers, or are you having time off from your working week? I’m becoming slowly dependent……. 🙂


highlander
2 months ago

@dominics
Don’t be casting aspertations to my constipation of incahol..
I resemble that remark…
Good constanoon aftaboll🥴


dominics
2 months ago

@vixen – I have little else to do apart from cook. I am under the weather at present. Not Covid -19 but just a general lurgy. It is really cramping my walking style. I had managed 168km in Jan. Feb a busted flush and so is March atm 🙁


d1zzy
2 months ago

Thank you @dominics – really helpful and interesting in these strange times. Hope you get rid of the lurgy soon, life is complicated enough at the mo. I’m fearful of my walking being affected by having to stay home – need some self discipline and a plan to keep moving that doesn’t involve doing an impression of a caged polar bear.


amala
2 months ago

Prof Gavin Giovannoni said people whose lymphocyte count is above 500 should be fine. My blood result says that mine is 1.2. Can someone, please, explain what does it mean, if it’s above 500 or not?

Thank you


dominics
2 months ago

@amala At a guess, 1.2, as in just 1.2 would probably mean you are dead 🙂 Am not a doctor so I just asked Google “Is a lymphocyte count of 1.2 ok?” and got much. This:

About 20 to 40 percent of all white blood cells are lymphocytes. A normal lymphocyte count for adults usually is between 1,000 and 4,800 lymphocytes per microliter of blood. For children, a normal lymphocyte count usually is between 3,000 and 9,500 lymphocytes per microliter of blood.

The term “lymphocytopenia” refers to a count of less than 1,000 lymphocytes per microliter of blood in adults, or less than 3,000 lymphocytes per microliter of blood in children.

1.2 is obviously a shorthand for 1200 so it sounds like you are good and healthy and in the normal range.

That is awesome news. You are young – you have no idea how lucky you are – so try to concentrate on the fun stuff. In too short a time you’ll be looking back at old pictures and wondering what the hell happened!

Take care.


amala
2 months ago

🧟‍♀️ 😂
I swear the report says 1.2!
I know you are not a doctor but you seem to know a lot. And you helped me understand it. Thanks 🙏🏼


dominics
2 months ago

@amala No sweat. 1.2 will almost undoubtedly be shorthand for 1200. 1.2 and you wouldn’t be posting on the forum. If you were alive – if – you’d be in hospital being treated for lymphocytopenia – https://en.wikipedia.org/wiki/Lymphocytopenia

I have had MS for 26 years, am 51, worked in the pharmaceutical industry, have been married twice, have a 17y old daughter etc. These are the things that come with being old.

What are you reading at University?

Experience is just trying to learn something from mistakes. I have made a lot of mistakes. I suspect you will too. Don’t sweat it.


amala
2 months ago

I’m not young or that young. I’m doing PhD in Variationist Sociolinguistics.
I was diagnosed last year, so I’m still learning about MS and all the terminologies. Especially that English is my second language. But I’m a very curious person so I always ask questions.


dominics
2 months ago

@amala that is cool. I had to Google Variationist Linguistics. You look a damn sight younger than I feel!

Now I am reading about Labov and Ebert. Are you looking at your native tongue for this? The medical profession is a rich field of study I imagine!

About 20 days before this entire Covid-19 thing went nuts a London Neurologist who works for Gavin Giovannoni agreed to be my PhD supervisor and get a decent for being proposal in place. Now I wonder when they’ll even be able to get their head above water and whether the traditional funding sources are not gooing to refocus their spend away from my social-medicine proposal.

Thanks me will tell, like everyone, I’ll need to wait.

For future reference, it is easier to pitch remarks/help/advice better when knowing English is a second language! Frankly, as a monolinguist I am in awe.

Take it easy.


amala
2 months ago

17 years before I was born, Labov did his first Variationist Sociolinguistic study. And now, I get to do the same and the first (I feel I sound like Trump every time I use superlative adjectives) study in English/Arabic. But, with improved methodology.

What’s social-medicine? I bet it’s more fun than normal medicine!

I hope you get to start your PhD soon.


vixen
2 months ago

@dominics and @amala, my daughter is doing a sociolinguistics PhD but in a university medical department, so very interesting indeed! @amala it sounds like you’re really on top of everything, given that you have a recent diagnosis. Keep powering on, and stay well x


amala
2 months ago

@vixen thank you! 🙂 and good luck to your daughter with her PhD. This group and the MS society helped me understand and accept my diagnosis.


dominics
2 months ago

#amala – sounding Trumpian…ha!

I can see how that would cause a mental block.

Social Medicine is just that, the social side. I am interested in exploring the interaction between the newly diagnosed – like you! – and the nature of the discussion, especially around risks of the disease and the treatment. I could on. You get the idea!


dominics
2 months ago

@amala apols. # = too much time on Twitter


dominics
2 months ago

@amy – who is this person above with their crazy cure sales pitch?


amyshift
2 months ago

@dominics, thanks for flagging. This member has now been removed.

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