In July many pandemic restrictions were lifted here in England (Northern Ireland, Scotland and Wales are still keeping various protections in place for now1). People are mixing more and they are doing so without taking as many (or in some cases any) precautions to protect others from the virus because 65%2,3 of the entire UK population have received 2 doses of SARS-CoV-2 vaccines. Much of the general population feel that all that can be done has been done and beyond that they weigh up being stuck with protection measures against living more ‘normal’ lives again and decide that they are prepared to take that risk and hope for the best. This is their choice for their bodies. The problematic part is when we vulnerable patients are expected to be at the same amount of risk and therefore to make the same choice. Vulnerable patients are at much greater risk. So although our friends and families are expecting to be able to see us again we’re having to shield even more than before because when the general population started mixing more our chance of being exposed to the virus increased dramatically. Yet often when we say we still can’t mix without lots of precautions it’s met with surprise or confusion. It’s hard for us to explain the complexities of our conditions and why we’re so different from the general population. I hope to help a little with that…
As a case example, here is why I can’t risk catching SARS-CoV-2….
1. My immune system is compromised so the vaccine doesn’t protect me as much. It will offer me some protection against hospitalisation and death but not as much as it would if my immune system was fully functional. (The UK government website generalises so this patient subgroup is not mentioned regarding the different risk4, but it is established that a natural deterioration of immune system effectiveness (immunosenesence) occurs with age and that the more the system is compromised the less effective vaccines are as a result5,6,7,8. Those with a compromised immune system experience this whatever age they are with the added complications of system dysfunctions and multiple condition impacts).
2. As my immune system is compromised – a lower viral load (smaller amount of virus) presents just as much risk to me as a high load. So situations that are generally seen as ‘less risky’ to others are still high risk to me.
3. My immune system is dysfunctional because a part of my brain is dysfunctional. My neurological condition is the reason why my immune responses are so, um, well, ridiculous quite frankly.
4. My nervous system is a quick-learning so-and-so. If a new physiological behaviour shows up, my nervous system learns it within 1-2 weeks. The learned new default is the new way of working. It does not go away. My body learns it and goes “this it how it is now” and it does it frustratingly fast so I don’t have much time to try and avoid the permanent impacts (and there is little that can be done about physiological behaviours that happen automatically). My doctors and I know this from my medical history which includes stuff like… the injury in my right knee spreading to my left knee in only a couple of weeks (the start of CRPS). The IBS set in within a couple of weeks of the disruption. The respiratory issues were locked in as the new default within a week or two of being prescribed an incorrect asthma inhaler. These are just a few examples of how quickly new patterns become permanent in my body.
So here’s the Thing:
Knowing this about my body: if I were to catch the pandemic virus I would have to absolutely get rid of aaaall symptoms within 1 week, maybe 1.5 at most, to avoid having to live with those symptoms for the rest of my life. I’m not being precious. I’m not a hypochondriac. I’m a scientist with a sucky disease. That’s it. It’s simple and it’s crappy. It is what it is though, and I don’t get to pretend otherwise because the risks are unbearable.
Most people make a full recovery in, wait for it….12 weeks!9 I know, right?!
I literally can’t afford to catch it.
If I do, whatever symptoms I experience are incredibly likely to become permanent.
Imagine having COVID symptoms every second of every day and night for the rest of your life.
This is what I’m trying to avoid.
And that’s what I don’t seem to be able to get across. Many times I’ve thought I successfully conveyed this situation, my partner likewise, and then the next conversation or visit we’re right back to being invited indoors, being told we don’t have to wear masks etc and we’re glancing at each other in confusion trying to figure out what happened.
We still get asked: ‘when are you going to live your lives again?’
The last time we were asked this my partner replied that we could live our lives up until I catch covid and then we wouldn’t have that life to live any more. He said that at that point my life as I know it would effectively be over. Which is why we’re trying to avoid that.
This is what so many fellow patients are experiencing right now. That dissonant horror of knowing that our loved ones care about us whilst experiencing them actively trying to dismiss our medical reality and repeatedly put us at risk. It’s obviously not what they think they are doing, they presumably think there is no greater risk for us, but why that view never changes no matter how many times we try to convey our reality is hard to figure out. It’s emotionally exhausting having to repeatedly explain that we are trying to avoid worsening our condition, getting hospitalised, dying or, as in my case, ending up with COVID symptoms for the rest of my life. It’s so painful and upsetting to repeatedly be told ‘it’s no big deal’. They’re effectively saying they don’t want to protect us, and that is so very painful, but it’s often because they don’t realise our risks are so great or, worse, genuine.
There are some variables I can’t control. My partner is a keyworker but he’s also my carer. He does the best he can to protect himself and reduce the risk of bringing it home. His employers have no interest in protecting his at-risk partner and his experience is that the general public were about 50% unmasked around him while he’s working when the rules changed in July and he’s found that the number of unmasked mmbers of the public around him has been increasing ever since. This already creates a percentage of risk for me and it’s already too much risk10 because I have to avoid catching it at all.
In my case a part of my brain is dysfunctional and detrimentally impacts my other body systems including the immune system. I’m an example of someone who ‘looks’ okay (because I rest and prepare before visiting / being visited) but whose condition is complex and multi-systemic. Many patients have more readily accepted situations, such as transplant patients and cancer treatment patients whose immune systems are, at the least, heavily compromised and yet even they are put at risk because people can’t ‘tell’ who is vulnerable by looking at them and tend to assume those around them have the same risk levels as themselves. There is a whole spectrum of conditions affected where patients struggle to explain the realities of their complex risk situation. So just because someone has a pain or other neurological condition, for example, does not automatically mean that their immune system is unaffected. Our body systems talk to each other and, over a chronic length of time, many other systems can and do become compromised. It doesn’t mean that they are ‘safe’ or that you or they being vaccinated will protect them enough to mitigate risks. The risk depends on the dysfunction within each person’s body and that isn’t visibly apparent.
I have friends around the world in my beautiful, knowledgeable, international patient network who also happen to be trained professionals with amazing skills11. We’re extremely well informed and continue to seek out the latest research, apply our skills to that and share the most reliable and useful aspects. Some of those friends have seen their risk factor become reality. For example, a friend with both CRPS and Dysautonomia now diagnosed with ‘Long Covid’ has extremely exacerbated autonomic issues that are impacting their life massively, (dysautonomia is also a commonly new condition in many previously healthy long covid patients9). Some friends with chronic CRPS have been told unequivocally by their doctors that if they contract the virus it would be astonishing if they didn’t die, and on the flip side an incredibly healthy and active friend seemed to be recovering from the virus when they went downhill and ended up rushed into hospital for worsening respiratory issues. Any of these scenarios could be me.
What can you do now that you know the risks are real?
The main thing is to be aware of what poses risk and avoid passing that on to the patient. If you do not come into contact with the patient they are protected but if you are doing higher risk things and then coming into contact with them, or worse – living in the same house as them, you need to be aware of how those actions are increasing their medical risk. For example, my lovely partner (the famed ‘Magic Dude’) misses going to concerts with his brother. They’ve been attending multiple concerts every year for many years and it’s a good way to example the varying risk level so I’ll use that as a comparison with his day to day work risk…
Members of the public popping in and out of the building around him, less than half of them wearing masks so any unmasked infected people will be breathing out in his vicinity for however long it takes them to run their errand in the same room as him. The amount of time they are breathing out in his space is key so the quicker they are gone the lower the risk. A door to the outside is usually open so there is some air movement in a small space. When indoors he always wears a good quality mask that helps to reduce aerosol reaching his nose and mouth as well as protecting others in case he unknowingly has the virus (he knows all too well that anyone could be in contact with a vulnerable person and doesn’t want to risk others). The longer he has to remain in one room with people coming in and leaving their breath floating around the more the risk increases. It’s not like he’s wearing swimming goggles or anything – if the virus comes into contact with his hands, face or eyes he is much more likely to bring it home to me.
At a concert:
People in the same space for several hours instead of minutes increases the risk significantly.
People shouting/cheering/singing loudly expells more aerosol than just breathing / talking, so this significantly increases risk as well.
Even if less than half of the audience were wearing their masks (same percentage as at work) the risk of exposure to the virus is hugely increased.
Even with my partner wearing his high quality mask there is a much higher potential for aerosol virus in the air and therefore of it coming into contact with him.
It’s in a larger space but the air ventilation is poorer overall which also increases risk.
Another way of demonstrating risk is to flip the scenario: people running their errands around him at work don’t hang around for a few hours cheering him on wildly and yelling along with whatever tune he might be humming at the time. It’s a biiiig difference!
Even an outdoor festival in Cornwall last month where as many precautions were set in place as possible, including testing people and refusing 450 of them entry as there was a chance of them carrying the virus…has still resulted in a massive surge of (nearly 5,000) new cases12. So we can see that even outdoor concerts significantly increase risk because of the close contact with others.
So once you know what puts them in more danger you can avoid those scenarios. The phrase ‘we’ve got to live our lives again’ is repeated regularly in the media and used sometimes as an excuse for putting others at risk. Living our lives again as we used to puts other people’s lives at risk. That’s just the sad fact of this situation we’re all in. Living our lives again with care about how we do so is the best all round way forward, especially for anyone in your life that you care about who is at greater risk.
Mitigating risk when you are in their vicinity
If you have a loved one who is at risk then there are ways you can help protect them as well as ways you can help them cope with that reality too.
First and foremost, know that their situation is majorly different from that of people with fully functional immune systems. What is lower risk for vaccinated immune-tastic folks is still life-threatening for us lot. The first biggest difference you can make is to not just listen but to truly hear what they are saying. What they are saying is entirely appropriate and proportionate to their level of risk, which is simultaneously completely different from your level of risk from the same thing.
So let them know you’ve heard them and that you have truly taken the information in.
Then: behave in accordance with what you’ve said.
The most painful experience for us right now is people telling us that they ‘get it’ and want to protect us but then demonstrating the exact opposite with their behaviour and expectations. You’ve learned that they are at high risk so please don’t then put them at more risk.
You can do this by:
– staying away from them if you are unable, or not prepared, to take precautions to protect them. You could have the virus with no symptoms and anything you breathe out near to them or in the same room as them can come into contact with them.
– showering and changing clothes after being in the vicinity of other people before you go anywhere near them.
– still keeping social distance from them even if you are taking precautions to protect them. No precautions will fully protect them, so the more precautions you take the more you reduce their risk.
– wearing a mask anywhere near them and especially when in the same room as them. If you unknowingly have the virus a mask reduces the amount of aerosol droplets getting into the space around them10.
– opening windows so that there is an airflow through the room taking aerosol droplets with it. This is important because the viral aerosol stays in the air for much longer than originally thought, and it doesn’t leave the room with you once it’s in the air. Leaving virus droplets in the air of a vulnerable person’s room becomes a higher risk because the longer it’s in the room with them the greater the chance that it will connect with them. One open window only reduces risk a bit, two windows reduces it further and so on. The more airflow there is the lower the risk. One window open will stir it up a bit but won’t be anywhere as effective at removing it from the room10.
– if airflow is tricky there are ways to increase it without knocking new holes in the wall for more windows. Air filters with an effective aerosol HEPA filter will help remove viral aerosol from the air, though it is obviously better if it doesn’t get into the air around a vulnerable person in the first place. Some air filters also have ionisers which are effective at removing aerosol from the air. Just be aware that there is a certain amount of ozone byproduct from ionisers. Low amounts of ozone from air filtering devices are often acceptable but check it out first and with regards to the patient’s and your own health vulnerabilities as it is a toxic gas. If in doubt open a window for ventilation. This may seem backwards when filtering air, but it’s not if your aim is to minimise viral risk in a room. If you have an air filter with different settings you should be able to turn the ioniser off whenever you need/want to whilst the air filtration continues.
– meeting outside is far safer than indoors even with windows and doors open, but still keep social distance as this is key to keeping the air around them as free of aerosol as possible and think about whether the wind direction is carrying it towards or away from them.
It’s not just about the people you’ve met with, but the people they’ve met with, and so on
Many people underestimate that the risk of catching the virus from anyone you’ve been near and then carrying the virus to someone else, but massively overlook the huge increase in risk when you meet anyone who has been in contact with other people. For example, one of our allotment neighbours was talking about only mixing with his “bubble” of people but was surprised to realise that the bubble isn’t actually a thing if anyone in the bubble is interacting with anyone outside of it. The bubble is only a thing if the people in it only interact with each other. Once anyone from that bubble starts interacting with others outside of it (meeting up with friends, going to school or work etc) they expose everyone inside the bubble to all the people they’ve been meeting (and all the people that those people have been meeting…) even though you haven’t. If any of them have the virus, that person is bringing the risk to you and when you meet up with anyone else you are then taking that risk to them. Worse still if you take that risk to someone for whom that risk is far greater.
Our eldest niece made an excellent example of understanding this when she went to visit her grandparents during the last lockdown. She refused to step inside their house and only talked to them from outside. They didn’t realise she was doing the entirely appropriate thing, but that didn’t matter because her choice of behaviour is what was important. She knew she’d been mixing with other people, she knew that having no symptoms is a Thing, so she knew she could be putting them at risk – and she chose to take precautions to reduce their risk.
It’s suggested that the only way to avoid having to take those precautions is to quarantine for the standard 10 days13 before meeting someone vulnerable as there is always the possibility of you having the virus with no symptoms. Every time you meet with someone who’s been meeting with other people your quarantine is broken and you’d have to start again as there has been another chance you may have been in contact with the virus. You are not ‘safe’ for a vulnerable patient to be with. However… even after quarantining there is still the chance that you have it but are assymptomatic (i.e. do not develop symptoms) because you can shed virus for up to 37 days14.
You can take a lateral flow test (currently available free15) which gives you an idea but that also isn’t absolutely definitive so please do still take precautions with anyone you need to / want to protect.
Vaccines in the general population
Anyone who has had (and not everyone can or should have) the vaccinations has a reduced chance of both hospitalisation and death. So yes, vaccinated people can still catch the virus and although for most people the risks are far reduced, for some people hospitalisation and even death can and will continue to happen because the vaccine can only teach the immune system how to deal with it, how well your immune system actually does that will be unique to you and your immune system.
– Being vaccinated does not mean that you are safe to be around.
If you’re vaccinated you can catch the virus and pass it on to a vulnerable person or to their partner/carer/parent/child etc who would then take the virus home with them. Vaccination reduces risk to that individual but does not prevent infection or transmission17.
– New virus strains may not be as mitigated by the existing vaccines. Earlier information noted the effectiveness of the vaccines against the Delta variant18 but it has since been found that the Delta variant is twice as contagious as previous strains19 and two studies have suggested the severity is more likely to cause hospitalisation19. Fully vaccinated people shed just as much Delta variant virus as unvaccinated people20. The shedding of that variant virus doesn’t last as long as with other variants19 but this knowledge isn’t helpful in practical terms as we usually don’t know when we’re shedding virus anyway because….
– Not having any symptoms does not mean that you are safe to be around.
You can be infected and not know it because the virus sheds long before symptoms show.
The virus can also present assymptomatically in some people meaning that symptoms never show up at all.
So being vaccinated and feeling fine / not having any symptoms is irrelevant to whether you are safe to be around.
Being vaccinated protects you from hospitalisation and death to varying degrees per individual but it does also reduce transmission in some variants to some extent (although the delta variant is virtually just as transmissable by people whether they’ve been vaccinated or not)19 – so it is a factor in helping to reduce the risk you put others at…. but…… you can still infect them and for vulnerable patients their risk remains about as high as it was before you were vaccinated.
By the way, symptoms in the vaccinated are generally much more low-key than in the non-vaccinated. You can see a list here.
Vaccines in the chronically ill
Those of us in the chronically ill population who are vulnerable to the pandemic virus have compromised immune systems. For some of us our immune system is dysfunctional / compromised / entirely absent, for others our immune system is dysfunctional because of other health issues having that knock-on effect. Patients with compromised immune systems can sometimes still be safe candidates for the vaccine, but…
– If a vulnerable person has been vaccinated it does not mean that they will be safe around the virus. Those of us vulnerable patients who are able to be vaccinated are not as well protected by the vaccine from hospitalisation and death. As our immune systems are compromised they can’t learn as much from the vaccine or put as much into responding to the virus as a healthy system would.
We have all tried explaining this to our loved ones in the hope that they would want to help to protect us but it doesn’t work out that way. It’s hard to understand why because we’re coming from two completely different points of view and experiences. It’s tough to bridge a gap of misunderstanding when we don’t really get why the misunderstanding keeps persisting. We don’t know where we’re going wrong. On either side of the puzzle.
I really hope that this helps start to bridge that gap. If sharing this information helps people understand why their vulnerable loved ones are vulnerable then I will be immensely grateful to have been able to help in any way.
Love and strength,
1. Coronavirus lockdown rules per country within the UK
2. 41,157,069 in UK have had 2x vaccs doses as of 18th Aug 2021, https://coronavirus.data.gov.uk/details/vaccinations
3. UK population as noted on 19th August at 68,252,116, https://worldpopulationreview.com/countries/united-kingdom-population
4. UK government advice for vulnerable patients, albeit with a misplaced general reassurance regarding protection afforded to the chronically ill instead of acknowledging that immune dysfunctional patients will be less protected
5. Aging of the immune system – focus on inflammation and vaccination (Oct 2017)
6. Aging and the Immune System: the Impact of Immunosenescence on Viral Infection, Immunity and Vaccine Immunogenicity (Nov 2019)
7. Can an effective SARS-CoV-2 vaccine be developed for the older population?
re: differences in immunity (Apr 2020)
8. Immunosenescence and human vaccine immune responses
re: less effective immune systems (Sep 2019)
9. NHS information on COVID and Long COVID
10. A room, a bar and a classroom: how the coronavirus is spread through the air
11. Our informal international network of patients who have professional skills and qualifications includes nurses, pharmacists, pharma reps, psychology grad’s, researchers, chemists….and on and on… CRPS, dysautonomia etc don’t care what we’re trained in, it’s happened to lots of us and we apply our skills usefully wherever we can
12: Almost 5,000 Covid cases linked to Cornish music and surf festival
13. Standard quarantine time if you have symptoms, also applies to protecting vulnerable people in case you are assymptomatic and do not show any symptoms
14. What is the duration of viral shedding in persons with coronavirus disease 2019 (COVID-19)? (Jun 2021)
15: Coronavirus Incubation Period
16. Order coronavirus (COVID-19) rapid lateral flow tests
17. One dose of COVID-19 vaccine can cut household transmission by up to half (Apr 2021)
18. Vaccines highly effective against hospitalisation from Delta variant (Jun 2021)
19: Delta Variant: What We Know About the Science (Aug 2021)
20. Covid-19: Fully vaccinated people can carry as much delta virus as unvaccinated people, data indicate (Aug 2021)