Immunocompromised risk

[treeflowercat]

My perception to date has been that those who are immunocompromised are at extremely high risk of Covid... And the shielding letters and comms to people in that category that have put the fear of god into them have reinforced this.

However, has the risk been overstated to the extent that those who are immunocompromised remain in fear of their lives when actually the risk doesn't actually merit that level of fear?

I've quoted from Prof Francois Balloux, who seems to be a very level head when it comes to Covid, with his summary based on a paper linked to his Twitter account:

"Immunocompromised people are at increased risk of severe Covid. For example the study below found a ~2x mortality increase. This is substantial increase in mortality risk but covid is not an automatic death sentence for the immunocompromised. To provide some context, the excess mortality risk of covid for an immunocompromised person, is roughly in line with being 5-10 years older, having a mental illness or being obese."

Of course, there's a spectrum of immunocompromised conditions, but this seems to suggest that it's not quite as bad as tends to be made out... and this kind of analysis may help those who are immunocompromised to be less concerned, whilst still recognising they remain at greater risk, and feel more able to have a fuller and less isolated life as a result.

I have no idea why I felt the need to justify myself to you OP

I suppose good practice for when people give me 'advice' that 'we don't have to wear masks anymore love'.

People are getting spat on for wearing masks, I feel like your post encourages the idea that people are somehow making up their risk.

I look fit and well but would die without the drugs which block the vaccine. So anyone would just think I'm anxious because I don't look'frail'

Hopefully most people understand that everyone has there own story

I am CEV had 4 jabs and have had PCR kit so I can access anti virals within 5 days of developing symptoms.

I am lucky I have been able to work from home in a part time role. I have been extremely careful in my own life but I have two teens in sixth form. I am worried BJ is jumping the gun so I am naturally quite wary.

I am awaiting another OH review about going back to work.

I don’t think you can really say unless you were in someones shoes OP. I am in no rush to travel on a plane, go to a club or busy pub, or have unmasked people potentially infected people being too close to me.

@treeflowercat

I think 'reassuring' people when you don't know their conditions or medication is maybe unwise.

I didn't want to suggest that the
immunocompromised are a homogenous group, and recognise that there are those who are at very much increased risk.

My point is that this study suggests that many aren't actually as extremely highly at risk as tends to be appreciated, and that it would be beneficial for that cohort of those who are immunocompromised to be aware of this if they aren't already as it may revolutionise their lives.

But this is dismissive because it assumed we haven’t been proactive in seeking information about our own diseases and risk profiles..?

Just this week, my husband has been told that most people in his particular situation die if they catch Covid. I was classed as CEV in the beginning. Now that I am vaccinated and boosted, my risk really isn’t that high. I’m more likely to end up hospitalized than the average person, but my odds of surviving are high.

Most people who suffer from serious chronic conditions have to see their doctors regularly. They can and should get personalized guidance.

@Mickarooni

But this is dismissive because it assumed we haven’t been proactive in seeking information about our own diseases and risk profiles..?

I've never said that I think all
Immunocompromised people don't have a firm understanding of their level of risk.

However, there definitely seems to be a widely held perception generally that if you are immunocompromised you are at massively higher risk, when that doesn't seem to be the case.

It's important from a society's perspective that this is recognised as it impacts on how we respond to it. If 1 million are at extreme risk, that's very different to if 10,000 are. The danger with exaggerating the number at extreme risk is that people will throw their hands up and say "it's too big a problem so we'll just have to live with it", whereas a smaller number would be more manageable to provide support to in terms of additional benefits etc

It is much more highly individualised than that. You can't just lump groups together like that.

Why do you want to know? Are you in a vulnerable category and want to calculate your own risk? Are you providing expert advice to those who are?

Or are you cherry picking some good news analysis, applying it to a catchall category of assorted "vulnerable" and concluding you can slice them into a really-honestly-vulnerable group whom you'll give "extra support" to to enable them to live under house arrest and a bigger it's-not-that-bad-stop-malingering group whose increased risk you're prepared to say is small enough to gamble with?

I think it's fair to say that many who thought covid to be an automatic death sentence were wrong. The knowledge acquired since the start of the pandemic has shown that. Many people with mild vulnerability were quite terrified.

In the case of the severely immunocompromised the vaccine had less or no effect. These people have had 4 doses and some will still have no immunity but others will now be protected.

I fall into that group and had covid last year after two jabs and was quite ill. Although I never want to go through that again it has shown me that I am not automatically going to die if I get covid. I have the emergency PCR kit and access to antivirals. Hopefully all that means I would be treated proactively and less likely to need hospital unlike last time.

There are some who are still at risk of death.

@treeflowercat

I think 'reassuring' people when you don't know their conditions or medication is maybe unwise.

I didn't want to suggest that the
immunocompromised are a homogenous group, and recognise that there are those who are at very much increased risk.

My point is that this study suggests that many aren't actually as extremely highly at risk as tends to be appreciated, and that it would be beneficial for that cohort of those who are immunocompromised to be aware of this if they aren't already as it may revolutionise their lives.

Totally agree, OP.

Am ECV, have had 4 jabs, have the red priority PCR pack sitting at home, access to antivirals etc. AND a good relationship with my clinical team who now have a LOT more data on how others with my condition and on the immunosuppressives I'm on have fared, and the answer is really pretty comparably to the rest of the population.

It's good news, as with a young family, I could never "shield" 100% effectively.

Some people aren't able to assimilate this sort of new information into their own risk assessments though and remain as terrified as we all were at the start when the knowledge was not much more than zero. It can't be great for their mental health health.

This is my medication, which is why I'm cautious

[quote treeflowercat]@Mickarooni

But this is dismissive because it assumed we haven’t been proactive in seeking information about our own diseases and risk profiles..?

I've never said that I think all
Immunocompromised people don't have a firm understanding of their level of risk.

However, there definitely seems to be a widely held perception generally that if you are immunocompromised you are at massively higher risk, when that doesn't seem to be the case.

It's important from a society's perspective that this is recognised as it impacts on how we respond to it. If 1 million are at extreme risk, that's very different to if 10,000 are. The danger with exaggerating the number at extreme risk is that people will throw their hands up and say "it's too big a problem so we'll just have to live with it", whereas a smaller number would be more manageable to provide support to in terms of additional benefits etc[/quote]
I guess it depends on what you consider the risks to be. Do I think Covid will kill me? No but I never did. I do feel hugely reassured by access to the anti-virals too.
For me, an infection can have risks that don’t necessarily involve death or hospitalisation. It can knock me off to the point of being housebound for weeks, unable to work and just generally takes a long time to get back to my physical baseline. The combo of missing my job and not being able to parent my kids or leave my home means I get really low in mood.

Am ECV, have had 4 jabs, have the red priority PCR pack sitting at home, access to antivirals etc. AND a good relationship with my clinical team who now have a LOT more data on how others with my condition and on the immunosuppressives I'm on have fared, and the answer is really pretty comparably to the rest of the population.

That's because the UK government list of ECV doesn't necessarily include all those at the very highest risk of hospitalisation and death. It was in part based on higher risk of infection (which is not necessarily the same risk as serious illness or death) If it did include everyone at highest risk, every person with diabetes would be on it. Given that is the comorbidity with the highest death rate.

But then also age is the biggest risk. Yet most elderly don't have access to the antivirals. They certainly weren't all put on the ECV list.

It's great that you personally are ok but your post screams I'm Alright Jack.

Of course somebody whose underlying condition risk goes, as you say pretty comparably to the rest of the population And as well has access to antivirals (that many higher risk groups do not), will feel relatively safe/lower risk.

But that's no consolation for the (many) millions of CV whose conditions do significantly increase their risks. Particularly those who aren't so lucky as you to have antiviral access.

Meanwhile because of Long Covid, everybody is at risk of becoming immunocompromised.

I don’t think you can extrapolate immunocompromised people’s perception of covid risk from a study of people who aren’t immunocompromised. If you’re severely immunocompromised you’re very likely to be regularly in touch with a specialist in your health condition and to have had conversations with them about your personal risk of you catch covid. It’s just not comparable with people who don’t have to have those conversations. I think I’m highly vulnerable because my consultant has told me I am.

Perhaps we actually have all the information? This is quite dismissive.
The immunocompromised group is a small group so do you really think we haven’t sought individual advice?!
I’m now living my life probably as I did pre Covid but I know there is a fair risk to me and I’m noticing an increasing number of people on here who are dismissive without actually understanding.

The OP asked a general question, not one about specific people.

Lots of people think covid is much more risky, statistically, than it is. Given they overestimate risk for one group, if they are scaling up from that, they may well overestimate risks for other groups as well.

That has nothing to do with the actual risk to you or any other individual person, it's about perceived risk in relation to populations.

Treeflowercat

This isn’t the first post you have made trying to convince people at high risk from Covid that those concerns are exaggerated. The simple fact is that as restrictions fall, life becomes small for the truly vulnerable. Those people know who they are. Perhaps there are some people out there that think that they are at extreme risk when they are not, but those people will eventually get on with their lives. The truly vulnerable are being advised by their doctors. They know the actual risk. Each will make their own decision on how to handle that risk. Many will want to maximize the odds of survival which means living increasingly isolated lives the more lax people become with regards to Covid.

@kistanbul

I don’t think you can extrapolate immunocompromised people’s perception of covid risk from a study of people who aren’t immunocompromised.

?? The study specifically included immunocompromised people

@MangyInseam

*Perhaps we actually have all the information? This is quite dismissive. The immunocompromised group is a small group so do you really think we haven’t sought individual advice?!* I’m now living my life probably as I did pre Covid but I know there is a fair risk to me and I’m noticing an increasing number of people on here who are dismissive without actually understanding.

The OP asked a general question, not one about specific people.

Lots of people think covid is much more risky, statistically, than it is. Given they overestimate risk for one group, if they are scaling up from that, they may well overestimate risks for other groups as well.

That has nothing to do with the actual risk to you or any other individual person, it's about perceived risk in relation to populations.

Again, the group of those who are severely immunocompromised/suppressed is quite small. We are only going on JCVI and government information. They looked at the evidence, assessed the risk and deemed this group eligible for 4 vaccines and antivirals. They assessed the general risk to this population. It’s not about perceived risk. They said we are higher risk. Very few people truly believe they’re at risk of death from Covid. As I said, yet another nasty infection can be highly unpleasant for some people.

@Tealightsandd

Am ECV, have had 4 jabs, have the red priority PCR pack sitting at home, access to antivirals etc. AND a good relationship with my clinical team who now have a LOT more data on how others with my condition and on the immunosuppressives I'm on have fared, and the answer is really pretty comparably to the rest of the population.

That's because the UK government list of ECV doesn't necessarily include all those at the very highest risk of hospitalisation and death. It was in part based on higher risk of infection (which is not necessarily the same risk as serious illness or death) If it did include everyone at highest risk, every person with diabetes would be on it. Given that is the comorbidity with the highest death rate.

But then also age is the biggest risk. Yet most elderly don't have access to the antivirals. They certainly weren't all put on the ECV list.

It's great that you personally are ok but your post screams I'm Alright Jack.

Of course somebody whose underlying condition risk goes, as you say pretty comparably to the rest of the population And as well has access to antivirals (that many higher risk groups do not), will feel relatively safe/lower risk.

But that's no consolation for the (many) millions of CV whose conditions do significantly increase their risks. Particularly those who aren't so lucky as you to have antiviral access.

Meanwhile because of Long Covid, everybody is at risk of becoming immunocompromised.

The CEV list is not hugely relevant anymore. There is no ongoing shielding programme and CEV were prioritise for vaccine.

Evidence has since come to light that some people remain at risk despite vaccines and thus, require 4 vaccines and possibly antivirals. If evidence emerges that other groups need it, they will - I’m sure - amend this group. Unless you know something everyone else doesn’t, I wouldn’t be making these crazy statements. There’s no evidence to suggest older people need an additional vaccine nor immediate access to antivirals but if this changes, I am sure this will come into fruition.

I am immensely grateful to the NHS and all those who have facilitated access to vaccines and medicines to very vulnerable people like me.

[quote treeflowercat]@kistanbul

I don’t think you can extrapolate immunocompromised people’s perception of covid risk from a study of people who aren’t immunocompromised.

?? The study specifically included immunocompromised people[/quote]
Was it not about death and hospitalisations? There are other really crappy things that can happen when you have a viral infection and you’re already quite unwell and vulnerable. My preference is usually to avoid this.

Again, the group of those who are severely immunocompromised/suppressed is quite small. We are only going on JCVI and government information. They looked at the evidence, assessed the risk and deemed this group eligible for 4 vaccines and antivirals. They assessed the general risk to this population. It’s not about perceived risk. They said we are higher risk. Very few people truly believe they’re at risk of death from Covid. As I said, yet another nasty infection can be highly unpleasant for some people.

I don't really know where you are going with this? No one is saying that it can'tbe bad for some as far as I can see, and I wasn't saying that. And the OP is talking about all immunocompromised people. Not just a sub-set.

People's perceptions of risk are very unreliable, I don't see why that would be surprising among any group of people who are from all walks of life.

I've seen a few people who thought that getting covid would be a disaster because of serious immune issues. Not a possible disaster, but an inevitable one, and then it wasn't - they caught it and survived or in some cases only were ill in a very small way. Which to me says that they overestimated risk, because obviously death was not inevitable.

@MangyInseam

Again, the group of those who are severely immunocompromised/suppressed is quite small. We are only going on JCVI and government information. They looked at the evidence, assessed the risk and deemed this group eligible for 4 vaccines and antivirals. They assessed the general risk to this population. It’s not about perceived risk. They said we are higher risk. Very few people truly believe they’re at risk of death from Covid. As I said, yet another nasty infection can be highly unpleasant for some people.

I don't really know where you are going with this? No one is saying that it can'tbe bad for some as far as I can see, and I wasn't saying that. And the OP is talking about all immunocompromised people. Not just a sub-set.

People's perceptions of risk are very unreliable, I don't see why that would be surprising among any group of people who are from all walks of life.

I've seen a few people who thought that getting covid would be a disaster because of serious immune issues. Not a possible disaster, but an inevitable one, and then it wasn't - they caught it and survived or in some cases only were ill in a very small way. Which to me says that they overestimated risk, because obviously death was not inevitable.

The evidence for the 4th vaccine and antivirals emerged later on, after this study was completed.

I am sure some people do overestimate their risk, in the same way some people overestimate their intelligence and the value in what they say.

It’s easy to say “oh don’t be emotional, you’re over estimating your risk” to people when you’re not in that position. I wouldn’t be so insensitive to tell other immunocompromised people that they’re poor risk assessors just because they chose to live their life a different way.

I am also on immune suppressants, 4 jabs and teenage children who don’t care about giving me covid. Won’t test, won’t take precautions etc.
But my consultant advised that people on the same drugs as me have not generally had worse outcomes to the gen population with covid.
I still haven’t gone back to the office and will ask them to clarify their mitigations policies etc before I do. OH think they can’t ask anyone who has immune compromised to go back .

Around 95 percent of the people involved in plane crashes survive the experience. Doesn't mean I want to fly with an untrained pilot, or let them guesstimate how much fuel the plane needs. Nor does it mean I'm being inappropriately risk averse if I say I don't want to be in a fucking plane crash.

Evidence has since come to light that some people remain at risk despite vaccines and thus, require 4 vaccines and possibly antivirals. If evidence emerges that other groups need it, they will - I’m sure - amend this group.

That evidence would, in part, be the 200-300 deaths a day (in the UK). Plus global data on the conditions with the highest Covid death rates.

But sadly, no, it's unlikely that they will amend the group. For two reasons. 1) It's a large group (diabetes alone is millions) and includes many essential frontline workers canon fodder, and 2) Certainly for the time being, supplies of the antivirals are limited (and there's a growing unwillingness to buy more vaccines).

To avoid any misunderstanding. When I talk of risk I mean risk of death, more than risk of infection (which is not necessarily the same).

The immunocompromised aren’t a small group. Most people don’t get past middle age without some form of health condition, whether asthma, diabetes, high blood pressure etc. Yes, vaccines may have reduced death risk but those health conditions can still mean that people get very poorly. Being hospitalised doesn’t normally happen with mild infections but it is still a real prospect for those with other health issues. Why shouldn’t people be worried about something that could affect their health to the point of hospitalisation even if it doesn’t instantly kill them? It could still have long term health impacts for them - not to mention long covid.

For what it’s worth, I’m a tripple vaxxed asthmatic. Normally my condition is well managed and I lead a full and active life. I even compete in weekly outdoor sports events and do well.

I’m also a teacher so am currently exposed on a weekly basis. Sadly, the worst trigger for my asthma are viruses and corona is so prevalent that it’s hard to reduce exposure.

I had hoped the three vaccines would mean I faired ok with Omicron but I still needed to increase my inhalers, take steroids and struggled with my breathing to the point where my doctor was still considering hospital and oxygen if things got any worse. Luckily they didn’t but it was still terrifying and next time, I might not be so lucky with a repeat infection and already inflamed lungs. I’m now seriously having to reconsider a whole new career.