Last reply 2 months ago
Daily Briefing Covid-19 [31st Mar 2020]

G’day,
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MS Stuff
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Covid-19, the reality bites. All the talk, now it is happening. At the largest hospital in the land, all the docs have been told to report for general duties. Read this: https://multiple-sclerosis-research.org/2020/03/covid19-reality-bites/ It is really hitting home.

Thee is a new global survey from colleagues in Sydney that you may want to take part in. It is patient-centred. The aim of the survey is to find out what effects of treatment and care (also known as outcomes) are important and relevant to patients with suspected or confirmed COVID-19, family members, community members and health professionals. http://tiny.cc/aas7lz

I am a participant in this debate: Should ocrelizumab and cladribine be treated in the same way as alemtuzumab in terms of risk of COVID-19? in an hour. Will report if it doesn’t descend into polarised positions. Knowing the participants – well, one of them – it may. Opinions remain strong, virus or otherwise.
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Social stuff
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If you like wasting time and procrastinating as mu7ch as I do then build a paperclip empire here: https://www.decisionproblem.com/paperclips/index2.html

Am off to coffee and prep for the debate!

Take care and don’t get the bloody virus right now 😉

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vixen
2 months ago

Thanks @dominics. Just had a call from my MS Team at a London hospital asking if my ‘meeting’ with MS nurse can be deferred for a year! Also, that the MS Team are all being redeployed onto the wards as of now.

One point she also made was that patient’s on DMDs having monitoring blood checks; only those with lymphocyte levels of less than 1 will be recalled for their next regular check. Mine is 0.8 (Dr Boster’s borderline) so I will be checked again in 2 months. Not sure if this is a national strategy regarding lymphocytes but I suggest this will become the case. So, I’d recommend anyone having a check up should call after to get their level, as I suspect letting patients know be priority at this time……


dominics
2 months ago

@vixen – questions for a GP? See this and my other post 😉


highlander
2 months ago

@dominics
On a similar note as @vixen mentioned I’ve been asking for my blood count since I started taking Tec and the only thing I keep getting told is they’re ok..
Why can’t doctors just give you a figure…..
I would like to know if it goes up or down … Surely that’s justifiable?
I get the impression that “you just wouldn’t understand”


stumbler
2 months ago

Some scary stuff there, @dominics . Thanks, as ever, for the update.


dominics
2 months ago

@highlander – asking your GP or the hospital?


highlander
2 months ago

@dominics
Two hospitals, two different MS nurses and my GP just gives the answer there good.. nothing to worry about…..
Is it a secret?!


clare80
2 months ago

@highlander, it shouldn’t be a secret. It is your information and you are entitled to it. After lemtrada I was e-mailing my MS nurse every month to confirm I’d done my bloods and to request results which they always sent me. I’m now signed up to an automatic service at the hospital where as soon as blood test results are available they pop into my account, before the dr/nurse has even seen them. It’s brilliant, I get the info I want, they don’t get pestered and it even draws a pretty chart showing results over time.


highlander
2 months ago

@clare80
That’s good to know.
Once the dust settles I’ll be asking about that, cheers.


itsmewithms
2 months ago

Again a good recap but I have to take exception to the statement in the article “in our fight against COVID19 – a foe that we never saw coming.”…where was everybody when it was coming? We hosted a 18yr old 4H visitor from Taiwan last summer so maybe I was more aware of happenings over there and in direct contact with her but there was plenty of warning of what was coming. The ramifications were simply unpleasant so they were ignored or perhaps we feel that our medical strength is somehow superior or they are in some way inferior.

From my perspective in the US I am saying that is simply not acceptable. We had plenty of warning and we chose not to react appropriately. I am only hoping that as the discomfort of this and the death counts continue to climb that it is remembered in our November elections and we have a change of regime. Strange enough the approval ratings of the Orange Menace remain strong but I am hoping that changes by then as clearly a change is needed.

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