Coronavirus - All MSers are considered “vulnerable”

[Marina]

MS is officially listed as one the of “vulnerable” conditions for the coronavirus (COVID-19)- regardless of whether we’re on a DMD or not - which means we should follow the advice for social distancing, and which the government link below says “is likely to be in place for some weeks” or which they said on TV would be 12 weeks...

 

Guidance on social distancing for everyone in the UK and protecting older people and vulnerable adults - GOV.UK

WWW.GOV.UK

---

 

 

Stay safe everybody!

[Eastendgirl]

Thanks for that Marina. Previous understanding was that people with MS were only considered vulnerable if they were on DMD's. It's good to have further clarification, albeit a bit worrying. 

[Nick]

Good clear advice and thanks for posting it Marina. 

Of course it is a bit worrying but you can only do your best.  

[Marina]

Just to try to clarify further. There are two aspects for MSers and the coronavirus:

 

1/ The term "vulnerable". This to do with what restrictions etc the government puts in place. If you're 60+ yrs-old, or younger with one of the conditions listed in the link posted above, you are therefore entitled to an annual flu jab - which is what puts you in the "vulnerable" group.

 

2/ DMDs. If you're on a DMD, you may have a higher risk of catching the virus and/or of having more serious effects from it, depending on which DMD you're on. The link in the post below goes to a PDF from the Association of British Neurologists, which lists which DMDs may affect you:

 

 

[Nick]

For those of us NOT on DMD's I thought the symptoms of pseudo exacerbation was a most interesting previous reference.  It's the thing I'm kind of dreading.

It is a difficult time but the more you know the better prepared you can be. It is only a few years ago when such things happened with no warning. Our generation in Western Europe have never experienced such uncertainty. 

[Marina]

10 minutes ago, Nick said:

the symptoms of pseudo exacerbation was a most interesting previous reference.

For anybody interested in the "previous reference", @Stumbler posted it here:

 

[Marina]

The government couldn't be more confusing even if they tried... There's "vulnerable", which applies to all MSers; and there's now "extremely vulnerable", which doesn't apply to all MSers:

 

Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 - GOV.UK

WWW.GOV.UK

---

 

 

It's the "extremely vulnerable" who are the 1.5 million who'll be receiving letters advising them to "shield" themselves for 12 weeks:

Quote

stay at home at all times and avoid any face-to-face contact

The "vulnerable" (eg, not "extremely") are advised to be "particularly stringent" with social distancing for "some weeks", as per the link at the top of this topic:

Quote

significantly limit your face-to-face interaction with friends and family if possible

 

[Nick]

Good point Marina,

Ive just been trying to decipher this myself. I take it that those with MS who are using DMD's are in the "extremely" category, and those of us who aren't will be "vulnerable"  but of course that is only my assumption based on what I have read. To be fair the government is running with maximum force at all this so there will be loads of things which will be unclear.  

[Marina]

I don't think MSers who are on DMDs are in the "extremely vulnerable" group, Nick, it probably depends on which DMD they're on. It would be best for MSers to check the links to the Barts MS Research Blog in this linked topic, including the one to their new Coronavirus Q+A site, as I think the opinions on which DMDs might be OK or not keeps changing:

 

 

Yes, those of us who aren't "extremely vulnerable" are still "vulnerable" and the advice is still to "stay home" (according to the statements in this evening's PM's news briefing). That's partly where the confusion lies, as both groups are advised to stay home, (or "self-isolate" or however you want to phrase it). The "extremely vulnerable" group will be receiving a package of additional help and will have community "hubs" for extra help, etc.

 

There is definitely still a lot that's unclear when it comes to the "vulnerable"... which, unfortunately, only risks creating more anxiety.

[PaulX]

There are some quite good webinars online, with some very high profile participants. There has, or will be very soon, a study from Italy regarding MS and COVID-19 in general published. 

My take away from all I have read is that having MS itself does not put you at a greater risk. It is dependant very much on your underlying health, age and to a lesser extent any DMTs you are on.

If MS is biting hard and has you in very poor health, then COV could be very, very bad for you.

 

It makes sense to take all sensible precautions, but unless you have been identified as in the very vulnerable group, you are not at elevated risk just from having MS.

 

Of course this is what I have gleaned from what I have read and certainly I am erring on the side of caution until more information is published and I am 100% certain. And maybe not even then.

Worrying times.

[Happymama]

Don't forget that as it went along, we have new info - obese = more risk, diabetes = more risk, male = more risk, over 60 = more risk

 

Skinny = less risk, under 60 = less risk, female = less risk and Type O blood = less risk.    Happily I tick for all of these.  Well, not so skinny but not obese by a long chalk.  

 

Some viruses can cause MS, and this one has caused symptoms we could all recognise, like brain fog, fatigue, and has been proven to get in the brain (which is a big deal) and has caused fits in some.  Layered on top of MS this would be nasty, and hard to put up with, for sure. I'm not keen on getting it, and only have been out for food, with oodles of gel on my hands and the shopping trolley before I start, and a mask, or to the shop across the road, with a mask and oodles of gel.  

 

There will be a lot of investigation after it's all finished and hopefully new RAPID protocols for prevention, plus protection, will be identified and arranged so they can be deployed in a very short space in time. I have masks to make, and some bought.  I shall keep some in storage after it's done and a big bottle of gel.  

 

There will be another one. It's not if, it's when.  The Chinese government refuses to get their wild meat sale under control, and there is a risk they will just make it illegal and thus drive it underground which will make it harder to identify the start.  

 

 

[Marina]

The “guidance” and “advice” has, in my opinion, been as vague as can be and has changed on a frequent basis - which is why I haven’t kept updating these Coronavirus/Covid-19 topics.

At today’s date, they are as follows for the “clinically vulnerable”. Details for the “extremely clinically vulnerable” are on the same pages.

Till tomorrow:
“You are advised to stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household or support bubble.”

 

Staying alert and safe (social distancing) until 4 July - GOV.UK

WWW.GOV.UK

---

 

From tomorrow:
“Although you can meet people outdoors and, from 4 July, indoors, you should be especially careful and be diligent about social distancing and hand hygiene.”

 

Staying alert and safe (social distancing) after 4 July - GOV.UK

WWW.GOV.UK

---

 

“particular care”, “especially careful and be diligent”: how long’s a piece of string? Surely these vague phrases are subjective?

It’s said MSers are no more at risk of getting the virus than the general public. However, getting the virus could affect us more than the general public or make our symptoms worse or we might be slower to get over it, etc. Too many factors at play to go into detail; however, the MSIF list these:

“Certain groups of people with MS may be at an increased risk of becoming severely ill or dying with COVID-19. The following groups should take extra care to minimise their exposure to the virus:

-    People with progressive MS
-    People with MS over the age of 60
-    People with higher levels of disability (for example, an EDSS score of 6 or above)
-    People with diseases of the heart or lungs”

I fall into the first 3 of these.

Some of us might continue to stay at home and not go out or have visitors etc, whilst some of us might be looking forward to the newer and no longer “stringent” (word previously used by the government for the clinically vulnerable) guidance.

 

A national poll run by my county’s disability service found that the majority of all clinically vulnerable people were not confident enough with the unlocking measures. I wonder if that applies to many of us too, or are you comfortable enough with the unlocking, especially the removal of the vulnerable from August?

 

[angela]

Hi all I havn't posted here for many years,I actually fall into all 4 on the list,I had a letter from my respiratory clinic strongly advising not to leave my bungalow for 12 weeks,a few days later I have a INR blood test so phoned health-centre told them situation to be told It's ok to go there,so from then on that gave me the green light to just go out when and if I want,and Angela being Angela I go out 3 times a week,socially distant,wear a mask and sanitize gel my hands as I come out of every shop,my daughter says good on you mum,I have carers 4 times a day so  just as likely to catch virus from them,last week I got my get out of jail free letter from Matt Hancock my daughter,her partner and my 10 year old granddaughter from tomorrow 6th can come inside my bubble and we don't need to soc distance,Bryony told me she can't wait to give me a hug,I can also meet up with 6 people outside but do soc distance.I also now have very severe osteoporosis and can only spend a few hours in my power-chair so after lunch I get hoisted back onto my bed,don't think I'm looking for sympathy just the opposite,but if I didn't go out I would go mad as anyone who knows me would tell you.

 

                                     Angela

[Marina]

Hi Angela, how lovely to hear from you again! As member no.29, having joined about a month after the forum started, you're one of the forum's founding members, which means you've been a member for almost 16 years - how wonderful is that?!

 

I'm so glad you've managed to stay safe , I'm sorry, though, to hear you have severe osteoporosis on top of everything else. I can imagine just how over the moon you and your granddaughter will be to see each other again.

 

Please excuse my ignorance, but what's an INR blood test?

 

 

 

 

 

[Stumbler]

@Marina , from the other side of the world :-

 

 

International normalised ratio (INR) test | healthdirect

WWW.HEALTHDIRECT.GOV.AU

---

An international normalised ratio (INR) test measures the time taken for your blood to clot.

 

[angela]

Hi Marina and everyone else,blimey was that 16 years ago I joined,I've been very happily divorced for 12,I take warfarin everyday after getting a blood clot on my lung and have to have regular blood tests to check the INR so they keep the dosage right,any change of medication can upset it.My Daughter and Granddaughter called in today I didn't think Bryony was going to let me go,even Harriet gave me a kiss,next week Bryony is going to nana sit a couple of mornings back to normal before this horrible virus took hold.When I manage to get my hair cut I'll get my carer to update my photo.

Stay safe everyone.

                                   Angela

[Marina]

Oh Angela, I’m so sorry, you certainly have more than your fair share of medical conditions! At the same time, you seem to have a positive outlook!

 

(PS - Sorry for late replies, I’ve got a tooth and sinus infection...)