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.

@Tealightsandd thanks so much, I'll go back to shivering behind the curtains and worrying about my next grocery delivery slot, eh? Best if us sickly folks stay terrified and hidden away

No, I'm very grateful for the progress that has been made and the protective steps that have been taken are a darn sight better than "shielding". My experience is that the comms from the NHS team on this issue have been pretty good, really, and like @Garysmum my team is really relieved that many of their worst fears for our ECV group aren't coming true. I don't pretend to speak for everybody else, nor will I apologise for being grateful for the care I receive and the research that's going on.

But don't you worry, I'm not really "alright Jack", massively shorter life expectancy I can't get travel or get life insurance & the immunosuppressives that are working will probably give me cancer (which I've already had anyway).

I'm sorry for your health worries @whitedahlias and, like I said, it's great that your own particular condition doesn't seem to put you at increased risk from Covid.

But it's a shame that you can't or won't acknowledge that your situation is not representative of or the same for the many millions of people who are at higher risk from Covid.

You must surely see, that posting agreement with pp who suggest immunocompromised caution is excessive - because your particular condition isn't one that appears to increase your own risk from Covid (but despite that you also have access to drugs not all immunocompromised have), smacks a little of I'm Alright Jack?

Many millions of immunocompromised people are still very much at higher risk from Covid. They are not unnecessarily 'terrified'. Many do, however, have justifiable fears about the lack of simple and easy basic infection control mitigations - and will therefore want to remain sensibly cautious.

Quite how pointing that out translates into me wishing fear and increased risk to you, I don't know. One would think that, having as you say shivered behind the curtains when you thought your own risk was higher, you would have empathy for the many people whose risk from Covid is actually higher.

But anyway. Best wishes to you wrt your own health concerns.

Tealights are you talking about people with autoimmune disorders when you say immunocompromised people or only those taking significantly immunosuppressant medication?

@PastMyBestBeforeDate

When I refer to increased risk from SARS-COV-2 (particularly wrt hospitalisation and death), I'm talking about all immunocompromised people.

For example, diabetes. Which has one of the highest death rates out of all comorbidities (it is the very highest, I believe).

Gingerandbiscuit is right. The immunocompromised are not a small group (the UK government shielding list excluded many of the highest risk groups, including the one that is not an immunocompromised condition in itself but, as they repeatedly emphasised, is the highest risk factor - age).

It's important to remember this when speaking about the immunocompromised - and whether feeling the need to remain cautious is justifiable for many (it is).

Although separately, everybody is only one SARS-COV-2 infection away from potential immunocompromisation themselves.

But diabetes doesn't make you immunosuppressed or compromised by itself.

Immunocompromised includes diabetes.

Autoimmune includes diabetes

But also regardless of exact definition of what immunocompromised means, the fact remains that diabetes is one of the very highest risks of death from Covid.

In Quarter 4 (Oct to Dec) 2021, diabetes remained the most common pre-existing condition mentioned on death certificates for deaths due to COVID-19 in England and Wales (22.5% of all deaths due to COVID-19).

www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/monthlymortalityanalysisenglandandwales/december2021#pre-existing-conditions-of-people-whose-death-was-due-to-covid-19-deaths-registered-in-october-to-december-2021

@PastMyBestBeforeDate

Autoimmune includes diabetes

Yes this. Definitely wrt type 1, and I believe there is recent research suggesting a link for type 2 too.

It does matter. I have two autoimmune conditions but it is the immunosuppressant treatment for one of them that stops the vaccination working, makes me eligible for a third primary jab, ant virals and my dc eligible for jabs. My conditions alone don't.

Yes, @Tealightsandd ... who exactly are you talking about?

And it's a bit odd to ignore the bit where I explicitly said I am talking about a particular group and what our treating clinicians have said and that I don't speak for everybody else.

Why exactly are you trying to paint my group of those on more than two heavy duty immunosuppressive meds as having got some sort of special treatment that we don't deserve?

I don't think it's because those folks at the JCVI have a soft spot for us and thought they'd dole out unnecessary tests and treatment for fun. The fact is, there were huge concerns initially and the data that has emerged through the work of specialists working at tertiary centres dealing with the group of which I'm part is more positive than had been hoped. I can't claim any special knowledge and it might be that some ECV groups are much smaller or varied so it isn't possible to see data trends - mine is quite a large group - but I'd hope that anybody who is in the ECV group is able to get updated advice from their specialist team and assimilate that information into their thinking.

When it comes to increased risk of hospitalisation or death, it doesn't matter whether somebody was put on the government shielding list or not. What matters most is their actual level of risk of dying.

Higher risk of catching it isn't always the same as higher risk of dying from it. (Although obviously it's perfectly understandable why anyone at higher risk of catching it might want to take sensible basic infection control measures).

Like you said whitedahlias information changed as we learned more. You say that you did your research - and despite initial concerns, it turns out outcomes for Covid infection with your particular condition compare favourably with the general population. Which is great news for you.

But that isn't the case for millions of people with different conditions. And it is therefore understandable (and prudent) if they want to continue to take precautions.

But also, like I say. Long Covid means that everybody is potentially vulnerable. And therefore regardless of the motivation why somebody is maintaining basic infection control mitigations, it is a sensible thing to do.

Why exactly are you trying to paint my group of those on more than two heavy duty immunosuppressive meds as having got some sort of special treatment that we don't deserve?

I haven't.

@Tealightsandd nope, never said anything about "my own research", it was advice from and NHS consultant for the specific cohort they look after (a few thousand), nobody else.

@Tealightsandd

But also, like I say. Long Covid means that everybody is potentially vulnerable. And therefore regardless of the motivation why somebody is maintaining basic infection control mitigations, it is a sensible thing to do.

Long Covid alone does mean you’re immunocompromised.

@Tealightsandd

Why exactly are you trying to paint my group of those on more than two heavy duty immunosuppressive meds as having got some sort of special treatment that we don't deserve?

I haven't.

Uh, what was with all the "I'm alright Jack" stuff then? I have to say, it made me laugh, being "alright Jack" is so far from the experience of the group I'm part of - many of whom are struggle to get by with UC, gruelling PIP assessments, funding their own support at home etc. - that any whiff of positive news is bloody great.

Tealights this thread was about the risk in immunocompromised people, not people with autoimmune conditions, not the shielding list. And not long covid.

@Tealightsandd

People with diabetes, for example, do not have the same abnormal immune system as a person with a primary immunodeficiency. I’m not saying their condition is any more or less serious or life altering. People with immunodeficiency have access to other drugs in a different way to other people for many illnesses, not just Covid. You seem to be competing in a way which is just ridiculous. It’s not a competition! A severely compromised or suppressed immune system is different to the immune system of someone with diabetes alone. It’s not more or less ‘worthy’ but it functions differently. I have access to antibiotics and antivirals for other infections. It’s what the medical research shows is necessary.

Yes you're right @Mickarooni

I don't know if many people realise that
Perhaps they do?

@whitedahlias I think it's best I stop replying to your posts as you seem to misinterpret everything I say. Semantics. To my mind, speaking to your consultant constitutes research. Perhaps I need an English writing lesson 🤷‍♀️ But it will have to wait, as I'm off out now (with my mask).

Have a nice (safe) evening all.

Long Covid alone does mean you’re immunocompromised.

Just before I go. I cross posted with your quoted post above Micka

With your second post, you seem to have misunderstood my posts. There's no competing. I don't know why you think I see anyone as more or less worthy, but anyway. I of course agree with you that it is not a competition.

Obviously, however - on a thread discussing the level of risk, it is relevant to talk about what conditions actually are highest risk.

Likewise noting the (sometimes) difference between higher risk of catching it, and separately higher risk of dying from it.

Right. I'll leave you to it.

@Tealightsandd

I have no idea what conditions make people highest risk. One can only go by what officials have deemed in need of additional vaccines or treatments.

All I know is that comparing type 2 diabetes and immune system diseases is like comparing apples and oranges. That’s not to say type 2 diabetes patients aren’t at risk. That’s not what this thread was about though, to be fair.

I made the mistake of checking this on a bathroom break...

I've already explained clearly the context of why one of your earlier posts might be interpreted as I'm Alright Jack Dahlias. The one that appeared dismissive of other immunocomprised people's preference or need to maintain caution.

Perhaps, like you misunderstood my posts, I have done the same with yours. Apologies if that is the case. And, again, I'm sorry to hear about your own struggles - and, again, I wish you well.

Re definitions of immunocompromised Micka. Clearly it differs between consultants. Two separate family friends, who live in different parts of the country (so have different doctors) have been told their condition (diabetes) makes them immunocompromised.

If you have no idea what conditions make people higher risk, you might find the ONS link I posted of interest.

Stay safe and well all. And remember, the point that I have been trying to make in my posts. If any of you no longer feel at higher risk from Covid, eg. Dahlias, that is fantastic. But bear in mind that this isn't the same for millions of other people (and also there's the risk of Long Covid). And therefore it is perfectly understandable (and sensible) if anybody wants to take basic infection control mitigations.