Poll: To what extent are you (PwME) still shielding from Covid?

[Kitty]

Even if the whole population of PWME was to do the maximum possible masking, cleansing, etc, what effect would that have on global spread of covid, especially since there seems to be very little prevention practiced by the majority?

Almost none, as most of us have only a fraction of the social contact that most people do. We're probably more at risk of getting it than spreading it.

As not many of us are able to work, we're at least able to isolate if we do get unlucky. We don't have the problem some in the workforce face, where mild Covid symptoms aren't viewed as a legitimate reason for taking sick leave, and infected children go to school as normal unless they're really poorly.

It feels like a losing battle on all fronts. Specially as there's no societal pressure against regarding Covid as just another run-of-the-mill cold that usually starts going round workplaces as winter approaches.

[Minor edits for sense]

 

[lunarainbows]

I’m still shielding. I wear masks when interacting with new people or in public. But, I have also been to a cafe & have eaten with people with my mask off, but I took my mini air purifier (SmartAir QT3) with me. It does make me anxious, but I also want to socialise when I can.

I take my mask off when I go see family eg grandma, or when I’m with my boyfriend.

When friends come round, I ask them to test beforehand. Some friends are coming round to eat at mine in 2 weeks time, so I can’t wear a mask then (and they can’t either).

It’s so difficult, it’s upsetting that the world wants to go back to “normal”, which means even the precautions that could be done, aren’t done. The social distancing rules that used to be in place eg in cafes, restaurants, lines, lifts etc, aren’t there anymore. We don’t have air purifiers in public spaces, ventilation etc. People don’t test anymore as there aren’t free covid tests. Things that could make it safer for us. Like if everyone wore masks in public spaces to minimise risk of catching covid, then when you need to take masks off eg at home, or to eat, it would be safer for vulnerable people.

If I and other vulnerable, disabled and ill people were to get ill, it would affect us so badly. It’s terrifying but what can we do?

 

[Binkie4]

I am still very bothered by the need to shield.
We ask workmen to mask, hairdressers etc to test and provide the test kit before visiting, we mask in indoor settings, avoid being close to anyone outdoors but there are inconsistencies in what we do. If having a meal or coffee out, rare but we do it very occasionally, we obviously can't mask but we do choose a less crowded venue.
I am glad to fill in this survey because it reminds me of the carageenan spray which I used for a while then forgot about it- now to be instituted again.
I think I do what I can while very occasionally taking a risk in order to do a minuscule of the things I enjoy.

 

[Midnattsol]

We shield as much as we can, ie. masking when indoors, reducing social gatherings, trying to move social gatherings outdoors... asking people to test and/or mask with various results. It's exhausting, but I don't want to lose the functionality that I have, and am worried that would be the result of getting infected with covid. I also really don't like the data on kids and long covid so we are shielding (for) the baby as well.

 

[Creekside]

If I and other vulnerable, disabled and ill people were to get ill, it would affect us so badly.

"Could" affect you badly, but not guaranteed "would". It seems that plenty of PWME have had covid with no serious consequences, while some did. There's no way in advance to know how a viral infection would affect you. You might get covid and have a few days of mild symptoms, but a new strain of common cold might wreck you. Maybe getting a viral infection and getting only mild symptoms would prevent more serious infections in the future. Getting covid might actually be good for some people, including PWME.

How much effort you want to make to protect yourself from covid is a matter of personal judgement, since there is no clear-cut answer to how a specific strain would affect you.

 

[NelliePledge]

Precautions against Covid people decide to take are likely to be somewhat protective against other viruses including flu and colds, norovirus as people found in 20/21.

From my one experience of non acute Covid I empathise with people who have more severe ME and have made the assessment that they want to continue to mitigate risks which are higher for chronically ill people. Including of being more poorly at homefor a few weeks or being ill enough to need to be hospitalised. Or indeed of long Covid from relatively mild case.

 

[Ariel]

Still shielding at home, alone, since March 2020. Only totally essential contact and masked where possible. Unfortunately I got covid straight away and was already infected trying to get set up to shield in 2020. I am now too sick to go for walks as covid made my ME/CFS severe again - walks would improve my life a lot. I just count my blessings of being able to move around the flat. I hope there is a vaccine or something that blocks transmission one day.

Disagree with comment above that "covid might actually be good for some people". Covid has devastated lives including mine. That attitude is not helping. How might it help? Speculation that it may help people recover functionality? The ill effects of the virus are emerging and none of the information I have seen is good.

My mother who was previously well now is housebound with ME/CFS following a covid infection. She can no longer care for me or herself, really. She is 60 and was forced to retire at 59 after a "mild" infection. She cannot walk down the street. My father also didn't recover properly. He had headaches after covid. He ended up with lymphoma as it turns out, a brain tumour. Maybe that is a coincidence. We don't know if he will go into remission. You cannot prove causation in particular cases but he got covid and was fine beforehand. Now he may not make it much longer. None of us can look after eachother.

I thought maybe they would be okay. I thought maybe I would be okay. None of it has been okay. This is why I am still shielding. If I get worse there is nothing, no help, nothing. Thank-you for reading. Thank-you for sharing your thoughts and experiences. It is comforting to know that other people are out there taking some precautions or thinking about this, as everyone seems to have moved on.

ETA: Before I got covid my ME/CFS was mild although I have been severe 15 years ago. I could walk around in the park and do all kinds of things! I became bedbound and extremely ill, unable to tolerate most sound etc. I am now housebound and do not want to get sicker again.

 

[Wonko]

 

[Trish]

Thank you @Ariel for sharing your family's experiences. I'm so sorry you are all suffering so much.

 

[Maat]

I used to, it was mandatory in prison, but I don't recall it being in the Cygnet secure hospital I was sectioned to, the staff were masked but I dont remember periods of that time due to the meds they put me on.

ETA my current attitude is what's the point? We weren't included in the Green book as clinically vulnerable.

 

[Skycloud]

I’m not shielding. I haven’t been able to since winter 2020. We all caught covid then via my then 90 year old father-in-law who brought it home from a hospital stay with pancreatitis. Government policy in action. As a result my mother- in- law died. My family really do understand covid risks but I live with my husband and daughter and they are routinely not able to avoid risky situations. Somehow, despite them having covid three times (iirc) between them since, I haven’t been infected (according to tests and lack of symptoms). We did isolate, mask and ventilate in the home as best we could once the infections became apparent. I have had yearly covid jabs but they wouldn’t have given much in the way of protection at the times of the infections. I think I’ve just been lucky so far. I mostly don’t think about it as there isn’t much I can do.

 

[Sasha]

Still shielding at home, alone, since March 2020. Only totally essential contact and masked where possible. Unfortunately I got covid straight away and was already infected trying to get set up to shield in 2020. I am now too sick to go for walks as covid made my ME/CFS severe again - walks would improve my life a lot. I just count my blessings of being able to move around the flat. I hope there is a vaccine or something that blocks transmission one day.

Pretty much word for word, this was me for 18 months after I got Covid pre-vaccine - then things improved a bit and now it seems to be happening again.

I'm so sorry for the struggle that you and your family are facing, @Ariel - I hope it helps to know that you're not alone in your experience, and that people here can understand.

 

[Kalliope]

A warm hug to you @Ariel
I agree with @Midnattsol ; this is exhausting!

I am still shielding, which frankly doesn't involve extreme new measures as I'm home alone most of the time anyway. But it also includes avoiding GP, dentist etc as there are no measures taken against Covid in health care. I have asked for safe appointments, but they said no.

Get groceries delivered at the door, on good days go for a walk outside, but do meet a couple of family members inside occasionally. They don't test, but know they ought to cancel if having symptoms.

There are a couple of shops nearby who have agreed to do pick-ups outside of their door.

Don't wash/quarantine groceries as most Covid transmissions happen when breathing in aerosols other people are breathing out.

Had Covid once. Got it either from an elevator or from picking up an order maskless inside a busy shop for a few minutes. Was fine after the infection, except from getting bone pain in a leg, then had a general deterioration some months afterwards, and now hip pain, but have no idea if it's connected.

Dread getting worse as that means becoming dependent on help that isn't available.

I know there was a study on MS patients and Covid. They scored lower on all parametres after Covid infection. Wish a similar study could be done on ME patients, so it was a bit easier to do a risk assessment.

I think this pandemic is really tough. I don't know if the review in Nature claiming 400 million people have or have had Long Covid is correct, but we do know a lot more people are struggling with post viral illness and it's still not on the radar of doctors, health authorities and politicians. All this additional suffering and nothing is being done to alleviate it. Absolutely nothing is being done to prevent a tsunami of disease in the population. And on top sick pay and health care is reduced. It also really shows how utterly ignored ME patients have been despite all the effort over many decades before this pandemic.

But this surely has to turn soon, yes?

 

[Peter T]

I have been lucky not having caught Covid (yet) even despite having shared my home with some one with an active infection some two years ago; we did manage to seal part of the house off with a dividing door and sheets pinned over both sides of that door.

I am being cautious in a limited sense but not enough to tick most of the boxes above. I try to avoid busy indoor situations but do risk going shopping once or twice a month. I did go to a wedding in June and went to an opening of a church last month. All of which I was unmasked, though did spend as much time outdoors as possible at these events.

Also my contacts know not to come to the house if they feel at all unwell, though obviously with Covid that is not sufficient protection given possible symptomless transmission. Also I do less if there are more local cases, but increasingly people are not testing if unwell so this is hard to gage within my social contacts. I try to distance, 2 metres, where convenient, but do not make an issue of it.

 

[Sisterofpwme]

In case helpful, this blog gives a useful roundup of practical things people can do to “avoid catching covid” https://livingonplagueisland.blog/2024/08/11/how-to-avoid-catching-covid/

I have a family member with severe ME and we continue to shield to try to prevent their condition worsening. Advocating with dentists, opticians, tradesman etc to build a network of trusted people who will wear respirators, ventilate, use HEPA filters etc etc is hard work but, so far, has been successful.

I have found it easier to ask people, including wider family and friends, to take mitigations when they understand how unwell family member already is. Explaining it in terms of “it’s not just covid, we can’t afford for them to catch any virus or infection” has been pretty well accepted and understood. I avoid any awkward discussion about how they themselves should be taking measures to protect their own health as well as that of their patients/customers/families.

The blog mentions the PlusLife testing unit which gives results closer to that of a PCR test and can also be used to test for flu/rsv etc. This has been a game changer for our family. How you use it depends on your personal risk assessment - we trust it to give 6-8 hours of time with visiting relatives. Close contact before we got the device involved them isolated for 10+ days before joining our “bubble”. There is an excellent private Facebook group called “Still coviding with PlusLife PCR-like detection” which can help new users understand how to use the device effectively. An independently developed app that allows you to see whether the person tested might be in the early stages of an infection, even if the device itself shows a negative result, is invaluable. More info from the team that developed the app is at https://virus.sucks/pluslife_en/

Keeping up with all of this can be time consuming and too much for annyone already unwell. There are some good people on Twitter/x and particularly good people in some of the other “still coviding” Facebook groups who discuss risk assessment, testing, air filtration, effective masking etc. The Clinically Vulnerable Families UK facebook group includes a lot of posts from people sharing and asking for advice about how best to deal with tricky situations. I find it really helpful to be regularly reminded how many of us covid aware people are still out there trying to do our best in the face of poor quality/non-existent public health information.

 

[Andy]

There are two aspects as to why I and my wife continue to shield as much as we can, and wear masks on the limited occasions we share a space with other people. First is to protect us from catching Covid again, with the main concern that the next infection might lead to a reduction in my functional level. The second is that by doing so, we play our small part in reducing further spread to other vulnerable people. We are well aware that our effort is a tiny drop in the ocean of infection and re-infection, and subsequent Long Covid, that is the rest of society, but it is our choice.

 

[Sasha]

Thanks very much indeed to everyone who has replied so far. I started this thread to find out whether I was largely alone in still shielding, and it's both affirming that I'm not, and sad that I'm not.

Even with all the precautions I've taken, I've had what was probably Covid twice now and both times it's cost me dear, and for a long time, in terms of function.

I feel as though we, the clinically vulnerable, are invisible to the Government, and to the medical world. It's as though there's a collective madness in which the Covid that's constantly circulating at high levels and the Long Covid it causes don't exist.

I don't know what it would take for attitudes to change.

 

[oldtimer]

I deliberately keep away from shops and give other people a wide berth as much as possible on the rare occasions I have no choice about shopping. I wear a respirator mask always if I'm out and around people and only take it off at the dentist. No more coffee outings for the foreseeable future either.

There is one person who comes inside my house once every three or four weeks for a hour or so and I take a risk but I feel uneasy about it.

This is is how it's going to be until more is known. Recent studies are not full of optimistic news though.

It's not hard for me, I admit. I haven't had covid and I'm going to do my very best not to.

 

[Sean]

I have managed to avoid Covid so far, assuming I have not had an asymptomatic case. And I plan to go right on not having it. Including masking up whenever mixing with the public, to the extent I can. Difficult when in the dentist's chair, for example.

 

[Keela Too]

I no longer mask.

I’m not convinced that simple masks are that protective (though they might somewhat reduce spread FROM an infected individual). The effective masks are just not user-friendly enough to use in real life situations.

I’m not often out in crowded indoor spaces, and when I am the noise levels limit my duration in company anyway. That’s even with earbuds.

I have not yet had covid (hopefully that won’t jinx me lol) despite my husband getting it twice & us both living in the same house during his recoveries. Mind you he was banished to one room, used our second toilet, and had all his meals delivered to outside his closed door!

I read somewhere about an experiment with mice & iodine and how placing a drop on the noses of mice could protect them from a corona virus infection.

I had iodine in the house. This is probably my folly, but I use it when I’m somewhere crowded. (Before & after). I also used it when himself was ill.

I really don’t want to get covid. Friends & family are very good about keeping out of my way if they have any sort of a sniffle.

Masking just seems an incredibly socially intrusive method of only maybe slightly protecting oneself.