CEV people, how are you feeling about today's announcement?

[SmashingBIouse]

No masks/self isolation to end in the near future etc

I fully understand that restrictions can't go on forever but I admit I'm a bit nervous. I'm considering pausing my immunosuppressant drugs for a while, until case numbers decrease (they're still over 2k per 100k here). There's a teacher in my household whose school currently has six teachers and countless students off with covid but no masks from tomorrow! Plus DH will have to go back to the office on crowded public transport.

I'll phone my consultant tomorrow, see what she says. I was advised to pause when Omicron cases were going through the roof here. I'm worried about what the lack of meds is doing to my body though (I have an autoimmune condition).

How's everyone else feeling?

I doubt anybody thought you were gloating.

I'm actually very happy to crack on back to work, but I would like a decent crisis plan.

I would rather like to know what access I would have to antivirals if I get ill.

I am definitely at "increased risk of getting infections", as one of the criteria for antivirals has it.

I don't see how I can go back to a very public-facing role unless there is a bit more of a game plan.

I am also interested in what is happening with boosters; when we first heard of omicron in late November, the pharmaceutical response was that it would take 3 months to produce a tailored booster.

It is over 10 weeks since the last booster, so I am interested in how I could be better protected, especially were I to return to work.

I also have a young immunosuppressed teenager, travelling on various forms of public transport to school, and for whom it has been a considerable piece of work to identify a plan for a booster.

I think that when there is a more structured plan available for vulnerable people, regarding boosters and antivirals, it actually will be safer for them, and there will correspondingly be less (reasonable) concern about returns to work and reduction of mitigations etc.

Till then, I am giving all the people telling us that we shouldn't be worried a Very Hard Stare.

@Sorehandsandfeet No one said you were gloating. I asked, quite reasonably, for you to be more careful about how you address the topic since your approach was quite insensitive - from that point on you've repeatedly accused me of saying things I didn't say (e.g. your implication that I claimed no one who can go out and do things can be 'real CEV' - which is miles from anything I've actually said).

Obviously it's a stressful time for CEV people; opinions and experiences will differ. We've mostly managed to navigate that on this thread - you're just being asked not to imply that people whose restrictions remain in place are somehow choosing that.

@ThievesTemple

He’s a disgrace, not even through winter, hospitals still struggling but to save his own ass, he’ll throw the health of the country under the bus.

Yep, this.

It's so obvious he's only doing this because he's scared if he doesn't the anti-vax anti-mitigation MPs will throw him out.

Numbers of people in hospital with covid and infections are HIGHER than when Plan B restrictions were brought in.

The only logical reason for ditching restrictions now is to save his own skin. He's so evil and literally could not care about anyone else other than himself.

There is a FB group for vulnerable people 'Clinically Vulnerable Families (CV/CEV) UK'. Its a really informative and friendly group with lots of knowledge, and lots of understanding for those who are feeljng isolated from society following these latest government measures.

From The Guardian today:
‘More people will die’: fears for clinically vulnerable as England axes plan B

In England, 3.7 million people fall in the clinically extremely vulnerable (CEV) category, including those with blood cancers, an organ transplant, kidney disease and other conditions linked to immunosuppression.

“It feels to me that lying behind the [lifting of restrictions] is the idea that probably everyone’s going to get it and everyone will be all right,” said Gemma Peters, the chief executive of Blood Cancer UK. “In our community, that isn’t true. If more people get it, more people will die.”

@Abraxan

Thinking of you and hoping that this dose will be very mild.

I also have Covid, caught in school. Cases have gone up ten-fold in a week.

Thanks. And sorry to hear you have it. Fingers crossed you stay well.

I'm day 2 now and today feel a bit rubbish. Like a very heavy head cold, bad constant headache, high heart rate, breathlessness and tight chest on doing anything, achy and very very tired. Been napping a lot today. It is very different symptoms to last time where the main issue was the blood pressure complication - so far my mediation is keeping that fairly stable, slightly raised by not spiking and not dangerously high this time.

I know the media keeps telling us numbers have gone down, but schools seem to be rocketing locally. All our local primaries have high numbers.

I've had my PCR, as advised by 111. You need that to trigger the next steps. But the antiviral treatment isn't guaranteed, even when eligible. You then need to wait for the antiviral people locally to contact you, when they get the result. They then have a discussion about health, health conditions, medication and then the pros and cons of the treatment. Only after all that happens do they make a decision about whether to give you the antivirals or not. And the service is limited, and in some areas non existent, over the weekend apparently. So may have to wait til Monday - which will be really close to the deadline for having it apparently anyway.

I’ve made a petition – will you sign it? Just need one more person to sign and then the government will check it and (hopefully) approve the petition.

Click this link to sign the petition:
petition.parliament.uk/petitions/606740/sponsors/new?token=YQDk43GxP1EsDrJY-QT2

My petition:

Provide effective face masks for the most clinically extremely vulnerable people

Lifting Covid-19 restrictions puts the most vulnerable people at risk again. The best way to avoid hospitalisations is to avoid catching Covid-19 — effective face masks (N95/FFP2 or better) help prevent transmission and infections, particularly for those who needed a third primary dose of vaccine.

If the most vulnerable people in society are given the option to receive a free supply of N95/FFP2 face masks, they can also participate in society without undue worry again. Something similar has previously been done with Vitamin D tablets in 2020/2021. These masks are not easily bought on the High Street, and the cost would be prohibitive for many of those who most need the protection they offer.

petition.parliament.uk/petitions/606740/sponsors/new?token=YQDk43GxP1EsDrJY-QT2

I've signed your petition [smile}.

However, I think sorting out access to antivirals is going to be the next gamechanger, as these could cut deaths still further as society opens up still more.

The system for getting those to vulnerable people seems very disorganised.

@Abraxan - how are you doing today?

@herecomesthsun

I've signed your petition [smile}.

However, I think sorting out access to antivirals is going to be the next gamechanger, as these could cut deaths still further as society opens up still more.

The system for getting those to vulnerable people seems very disorganised.

Thank you. :) The petition is currently being reviewed by the government — hopefully they publish it soon so it can be shared more widely.

The new antivirals will be brilliant when everyone can easily access them. The masks would help massively with reassurance though — right now it seems like there’s no protection in place to help us avoid it in the first place.

Similar to yesterday.
Like a very heavy cold with constant headache, tired and achy, breathless, tight chest and raised heart rate. But no worse

Really glad things at least haven't worsened for you, @Abraxan - but of course sorry you still feel rotten.

I'm glad. I can't wear masks anyway as they made me faint. I think for CEV people who work, things should definitely still be in place so they can work from home. I will access risks/benefits of situations, but I am trying to live my life to the full as possible.

but I am trying to live my life to the full as possible

So are those of us who are shielding.

Many seem to think that if a CEV person is shielding they are scared, in hiding, anxious, “in a bunker” and / or not “living life”. This isn’t true. I have shielded from the beginning and continue to do so. Our family life has flourished and we’ve changed our lives for the better in many ways, we’ve been fortunate in that regard. I am living a full and rich life with connections to those I care about while shielding. My mental health hasn’t declined and I am not suffering as a result of my will to live!

@Villanelle17 We want to live our lives too. I don't know why you would assume that's somehow not important to us, or that you need to share your thoughts on our thread.

It is such a shame that phrases such as “getting on with life” and “having a life” and even “living life” have evolved during the pandemic to mean “a life without precautions to protect myself and others against a potentially lethal virus”. This is an insidious use of language that objectively means very little (i.e. one person’s “living life” is never going to mean the same as another person’s “living life”) but in the context of public health and politics is loaded to the extent that it could mean that some lives just don’t matter as much as others.

@Villanelle17

I'm glad. I can't wear masks anyway as they made me faint. I think for CEV people who work, things should definitely still be in place so they can work from home. I will access risks/benefits of situations, but I am trying to live my life to the full as possible.

Not all CEV people can wfh. And even if they can the people they live with may not be able to. They may have DC at school. It's impossible to live in a bubble and most of us don't want to anyway. We're as done with restrictions and all of it as everyone else.

We all want to live our lives to the full (and see everyone else being able to do so, too). Sadly though there are some very difficult choices to be made - do we risk going to that gig we're desperate to see knowing we may get very ill? Do we stop treatment that stops flares, knowing that if we catch covid in a flare it's incredibly dangerous? But by taking our meds we're more at risk of catching it and still becoming ill?

It's so frustrating for our loved ones too. DH has quite understandably had enough of not being able to do the things we used to do (I became CEV last year). We used to have a great social life, a couple of gigs a week, travel etc. I have to make some serious decisions about whether to do some of it again knowing I may get ill, it's really unfair on him and he shouldn't have to suffer because of my illness. I had very few friends pre-covid (no close friends, just some people I met online due to shared interests who I'd sometimes meet up with for gigs etc) but they've all fallen away. It's very lonely being CEV at the moment.

It's all a bit rock and hard place and I'm not having a great day today tbh.

Wow that was a bit woe is me! Sorry

Signed your petition

@treeflowercat

Signed your petition

My last message related to @RachC2021 btw

Fingers srossed for those testing positive.

Someone was wondering about re-infection for those immunosuppressed. I haven't been re-infected but I did get my ABs checked.
I was hospitalised with covid last summer, double jabbed at the time. The consultant was clear that I had benefited from the vaccine even though I was quite ill.
Incidentally they stopped my RA drugs while I was in hospital though they more than compensated with dexamethasone. I fully expected a major flare alongside such an infection but I didn't have so much as a twinge.

I have been taking part in research since the beginning of the pandemic (slightly selfish I forsaw a need to know how people like me were affected). I did antibody tests from Feb 2021.
I didn't develop any antibodies until 11 weeks. after my first dose of AZ. They don't give me a quantity of ABs just a positive or negative and a positive can be very low. So I surmise that my 2 doses of AZ didn't help a lot.

Anyway after I had covid I paid for a quantitive antibody test and my ABs were off the scale. This was extremely reassuring.
No idea how I stand 4 months on but I had my 3rd dose in October and have yet to have a booster. I plan to hold off for a while.

@SmashingBIouse I'm really sorry you're having a tough day. It's okay if you need to wallow for a bit! People on this thread (at least some of us) really get it Sending unMumsnetty hugs.

Hope this is as bad as it gets @Abraxan and you start feeling better soon.
@SmashingBlouse it's impossible not to have down days. There's a gig I really want to go to but I'm worried about my immunosuppression and my mobility too. My days of bouncing about in front of the stage are done but I did at least do plenty of it!
@CatAlice that was me. Interesting to know you did have antibodies at some point then. It's all such a guessing game!