Afternoon all, 
&#8211; 
Not sure when I ought to drop the Covid-19 tag from the headline. I think it should last as long the lockdown lasts. We see the conversation subtly changing now to more of the looking ahead. You can’t panic forever. 
&#8212;&#8212; 
MS Stuff 
&#8212;&#8212; 
I still see people asking about the risks – or otherwise of their DMT in relation to Covid-19. It is worth repeating that the risk of catching it doesn’t come from either MS nor the DMT you may be on. There is theoretical risk based on a few drugs/treatments, the point you are at in the treatment cycle and, amongst other things, your lymphocyte count. To date, there have been no Covid-19 related deaths where any additional issues were thought to have been caused by a DMT. The best advice top date about the risk factors associated with all the DMTs (UK list) is here: https://docs.google.com/spreadsheets/d/1GqEoeXod4CLTBsa6ke0TWmiJ7_I77HiBQ_rvFrmouOA/edit#gid=0
&#8211; 
Another thing to remember is that we – the MS community &#8211; are far from the only lot of people to receive immunosuppression treatments. The rheumatology community went through a similar cycle of being massively concerned at first and then gradually more relaxed as data emerges. 
&#8211; 
APPLICANCE OF SCIENCE, WHEN AN AUTOIMMUNE DRUG HELPS https://multiple-sclerosis-research.org/2020/04/applicance-of-science-when-an-autoimmune-drug-helps/ 
&#8211; 
Being cooped up, under lockdown, isolating, quarantined, in confinement (C19 pregnancy leaps to mind?) means that more than ever we need to avoid losing our marbles. Dr Aaron Boster has made this short video about staying sane and managing stress: https://www.youtube.com/watch?v=OaONzqBY27g&amp;feature=em-uploademail 
&#8211; 
More of the talk about returning to normal is vaccine talk. It is critical to understand that, whatever a friend of a friend on Facebook who knows all about this stuff says, it will be a year+ away. Talk of September is an utter manufactured pipedream. This piece explains just what, why and how and more importantly, what this means to pwMS: https://multiple-sclerosis-research.org/2020/04/mscovid19-vaccines-and-dmts/ 
&#8211; 
If you haven’t ‘seen’ your doctor yet via video, it is a matter of time. Aaron Boster shares some unexpected effects for him of being teleported via the magic of video, into patients homes: https://www.youtube.com/watch?v=okjQwhiJ-gY&amp;feature=em-uploademail 
&#8211; 
2/3 of new diagnoses are women around the age of 25. A ti9me many are turning their thoughts to pregnancy. Prof G explains the way forward through this and why you cannot just postpone your (and a new presumably) life because you have MS and there is Covid-19 floating about: https://multiple-sclerosis-research.org/2020/04/mscovid19-what-about-pregnancy/ 
&#8211; 
Tired of being tired? I fell across this and it seems interesting: https://www.youtube.com/watch?v=s2hxb5vCN74 
&#8211; 
Still not bored or tired? I guess you have excellent neuroprotection. Time to read a little more about the possible drugs that aid in this. Fampridine and cannabinoids: Neuroprotectives? https://multiple-sclerosis-research.org/2020/04/youre-had-neuroprotectives-for-years-you-just-dont-know-it/ 
&#8212;&#8212;&#8211; 
Social Stuff 
&#8212;&#8212;&#8211; 
Mrs S is a teacher and the Covid-19 lockdown has expo0sed just how woeful the state of IT is at her school. I am now tasked with sporting out some software to make videos for her. 
&#8211; 
Laters. 2m. Just do it.

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Daily Briefing Covid-19 [Apr 20th &#039;20]

Hi all, just wondering if there are any other nurses out there?? 
Are you still going to work?? 
I was planning on carrying on going to work and just being extra careful and socially distancing myself in my personal life (aka not going to shops and restaurants etc) but then I spoke to my MS team and they told me that I should not be going to work as a nurse &#8211; their theory being that it’s impossible to socially distance as a nurse. 
I feel so guilty about not being at work at this crucial time but I also need to look after my own health! 
Just looking to see if anyone is in the same position and what you have been advised?? 

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Nurses with MS

Hi

After 4 years on alemtuzumab I was due to move to Ocrevus (following breakthrough activity) in April. Bad timing. I'm treated at the National Hospital for Neurology and Neurosurgery, and was told yesterday that infusions the new patients might not be available until September/October. A huge cause of anxiety as I am currently living with  nerve pain and the obvious risk of more relapses. 

I am interested if anybody else at different hospitals is able to begin treatment on Ocrevus, Cladribine or Alemtuzumab, any sooner. I know NHNN is often more cautious at prescribing,  and I know that this is currently the national guidance on prescribing these treatments , but I was keen for any other peoples' news about when we might be able to start treatment and I wanted a comparison from another hospital. 

Would be grateful of any experiences/news.

Many thanks

The restarting of Ocrevus after coronavirus delay

Hi!
Welcome to our wee friendly group! 
We&#8217;re having a virtual meet up tomorrow on Houseparty from 12pm. 
We usually meet up in either an ice cream parlour, pub / restaurant or tearoom locally and have either brunch or lunch or afternoon tea, depending on the time of day we&#8217;re meeting up. We meet the middle weekend of every month, alternating between à Saturday and Sunday. 
Please feel free to sit with your brunch tomorrow whilst we chat! 
We&#8217;re very informal and talk about everything and nothing and we&#8217;re there for each other when we need someone to talk to. 
We&#8217;ve been going since January 2019 and we have a very loose, fluid group.
We tried a virtual zoom session last month with a few technical issues, so we&#8217;re going to try houseparty this month and then decide which is best for next month! 
Here is my houseparty link, can you please send me a message on it as I have to invite you to join my room when we get started tomorrow, or let me know the username you set up on it? 
We need to talk. https://get.houseparty.com/zbfPXEhkv6
If you want to install the app on a Windows laptop, you will need to use chrome to run it, it doesn&#8217;t work on any other browser. 
We look forward to meeting you tomorrow! 
Kind regards, 
Vivien and Craig 
<a class='bp-suggestions-mention' href='https://shift.ms/members/vivien/' rel='nofollow'>@vivien</a> 
<a class='bp-suggestions-mention' href='https://shift.ms/members/watsoncraig/' rel='nofollow'>@watsoncraig</a>

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Central Scotland meet

test&#8217;s&#8217;s&#8217;s&#8217;s

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Raynaud&#039;s test

Testing characters Raynaud&#039;s

Hi

After 4 years on alemtuzumab I was due to move to Ocrevus (following breakthrough activity) in April. Bad timing. I'm treated at the National Hospital for Neurology and Neurosurgery, and was told yesterday that infusions the new patients might not be available until September/October. A huge cause of anxiety as I am currently living with  nerve pain and the obvious risk of more relapses. 

I am interested if anybody else at different hospitals is able to begin treatment on Ocrevus, Cladribine or Alemtuzumab, any sooner. I know NHNN is often more cautious at prescribing,  and I know that this is currently the national guidance on prescribing these treatments , but I was keen for any other peoples' news about when we might be able to start treatment and I wanted a comparison from another hospital. 

Would be grateful of any experiences/news.

Many thanks




Testing this post out Lemtrada - whats happening?

Daily Briefing Covid-19 [Apr 20th '20]

Nurses with MS

The restarting of Ocrevus after coronavirus delay

Central Scotland meet

Raynaud's test

Testing characters Raynaud's

The restarting of Ocrevus after coronavirus delay

The restarting of Ocrevus after coronavirus delay

Lemtrada

Oh testing post button

Looking forsomething specific?

Looking for
something specific?