Long Covid in Adults

What other sources of information generally speaking have you been able to find?

Not much really. Just, I mean, I just started Googling it really and things like that. And just, and then there’s nothing particularly, there’s nothing really out there that’s kind of, that I don’t know already having had it. Okay, if I hadn’t had it, fair enough but because I'm, that’s what it is to me. It’s, kind of, more like, this is a thing that happens, oh, you know, it must, it feels a bit like this, blah, blah, blah. Okay. But I know that.

But there doesn’t seem to be, there’s no, like, sort of, “Do this exercise three times a day and it’ll help improve it” or anything like that particularly. It’s all, kind of, a bit wishy-washy about what to do.

So, yeah, that’s the, it’s all outlined but it’s, kind of, there was, doesn’t, I haven't heard of anyone going, “oh yeah, I lost my sense of smell and taste for a year, but I got it back.” You know, that’ll be really nice to hear [laugh]. Just, to give you a, just to give you a bit of hope.

I suppose I touched on this already but I’m just thinking about what, what kinds of information is available for people about Long Covid? And how easy that is to access? Is there anything else that you wanted to say about that?

Yeah I think so there’s, there’s various things like British Heart Foundation maybe or some kind of lung charity, I forget. And then, Your Covid Recovery from the NHS so there is information there and you can tell it’s been written very clearly so it’s easy to understand when people aren’t feeling very well. The problem is though, for me, is that they lack detail and particularly when you’re trying to build up the exercise gradually. So I spent a while thinking, “Okay, we’ve got the, the whole increasing ten per cent each week of activity but is that only for a walk that you set out from your front door and you walk down the street? Or do you count incidental steps within the house? Or if you’re in the garden just pottering around, does that count?”

Normally, it wouldn’t make a bit of difference to most people but if you’re only walking about ten minutes it actually does because by the time you’ve wandered around and made your dinner then you might be at your ten minutes, kind of thing [laughs]. So, I think it would be really helpful to have clear guidance on that. And I think some of the guidance about pacing as well tells you quite a lot about the principles of how you might start with it but maybe to have more scenarios, more kind of complex scenarios, would be useful. Everybody’s circumstances are different but sometimes it’s quite hard to go from the principles to put it in practice.

It just is really, really constraining a lot of the time. You know, it’s quite difficult to adjust your life to that point. So, I think those things would be useful. Also, more guidance about, so I’ve got an Apple Watch with a heart rate monitor. And I’ve read that you can do pacing to keep your heart rate within a particular threshold, but I don’t feel confident about being able to do that. So it would be useful to have more advice on that kind of thing as well. Because I kind of feel that we’ve got quite a lot of technology which could be useful but what’s missing is knowing how to, or having some advice from a healthcare person about how to put it into practice and how to really use that tool as something which helps you.

Yeah, yeah I think so. It’s quite hard to discern. And, you know, I could spend, you know, an hour sitting reading everything and then at the end of it I think yeah, what from that am I taking away. And certainly, in the early stages it was a bit ironic because being on a screen, I think I, I mentioned last time, is, is, you know, difficult for me [laughingly]. And I was spending, you know, an hour, it’s quite ironic really, I was spending an hour reading…all about Long Covid stuff on a screen and then I’d…you know, to try and help myself. But then because I’d been on a screen for an hour, I’d then feel worse after so…it’s always sort of constantly weighing up, yeah.
 
I’ve also attended a couple of like webinars and Zoom chats and things. But I know a couple of organisations, aren’t there, like Zoe, are sort of sharing information. So, I think it’s good to try and keep informed but also sometimes to be able to step back [laughs]. And like I say I think I’m aware you know, I heard, I heard one stat that there are sort of two hundred symptoms being experienced by Long Covid sufferers, and I, I might have yeah twelve or thirteen of those, but I haven’t got all the other ones. So, it’s hard to know with what’s being recommended which thing for me personally is going to be the way for me to improve [laughs].

The thing I’m trying to avoid and this, well, it happens on social media, is somebody sharing, and it’s often either American or kind of international markets sharing information that’s not quite accurate, but it gains a huge following online. So, I’m a member of one of the long Covid groups on Facebook, on social media, and quite often we’re seeing the same video being shared and some of the information just isn’t…either isn’t applicable to us in the UK, it’s medicines and practices that aren’t approved, or it’s just based on very kind of weak footing in terms of the scientific background. So that’s one of the big concerns I have, especially now that I’m kind of moving on with my recovery, that I’m better than I was before. If you have a very poor attention span or you don’t have that much energy, you can’t differentiate between these and you could be wasting your time and going down paths that just aren’t going to be helpful.

So from that point of view then, it would be helpful if this site were to check back with people to find out which, the sources of information that we highlight are ones that people have found to be genuinely helpful and to have been verified…

Very much so, yeah, and kind of have verified sources that is the concern there. I think it’s…there is, there is these two… There’s kind of just listening to stuff and understanding people are having long Covid, I don’t think the source of that is too needing to be dug into, but when it’s to do with this helped me or this is what I asked my GP for, I think those are when we think actually this does need, does need vetted more.

And I think sometimes, particularly in social media, maybe in the print media, so papers, magazines, they have an obligation to do that research, whereas online I don’t often feel that that research is, is being done.

I’d never set up a Facebook group before, I’m not very techy and I was really, I was just bed-ridden the whole time, and so I pressed a few buttons and pressed, made this Facebook group, and it spread through word of mouth, and has now got nearly 46,000 members in a hundred countries. So and soon after I took to Twitter, which I’d never been really active on before, but I’d already been, I’d started being active on it even before I started the group, to say, I was trying to kind of tag, I don’t even know how to use Twitter either, I just, I’m a novice at all this stuff really, but I was trying to tag influential people saying, because at the time the government was only talking about cough and fever as symptoms. And I actually didn’t have either of those, and nor did I have the loss of taste and smell which was added later, but I, myself and my children didn’t have any of those symptoms.
 
So, I was trying to flag people that we urgently to update the symptoms list because people are inadvertently spreading this thing, not knowing that diarrhoea or their joint pain, or their sore throat or their headache, you know, they’ll be wandering the aisles of Asda spreading this around. And, but nobody was listening so when I then set up the Facebook Group and became very active, because we were invisible as a community, nobody, everyone was talking about deaths and hospitalisations, well they still do largely, frankly, Long Covid is overlooked too much. And so yeah, very, very actively campaigning for, we came up with the three-word slogan of rehab, research, recognition is what we wanted, and just really just plugged away and, you know, all that stuff.
 
Cos I’m very active in the Long Covid community as a result of setting up this group, we get approached a lot by researchers, by journalists, by, I’m on the NHS England Task Force on Long Covid, and on the Department of Health round table on Long Covid. I get asked to speak at conferences and webinars. We actually helped organise the first global research conference on Long Covid.
 

But I remember sort of so I had been Tweeting about the fact that I was still sick and I had put my Facebook post I think two months on from my infection saying that, I was still sick, basically and that I was still unwell, you know, please be careful. Try not to catch it. And I’d been Tweeting about it. I’ve had some pals who ran a podcast who invited me on and I spoke about it there and then I wrote it up for a pal’s blog, which then a BBC journalist saw and I got asked onto a radio show. And, that radio show is probably one of the most consequential things I’ve ever done. Because for two reasons, one is that it then got written up into an article, into you know, ‘[City] Man still sick with Covid 12 weeks on’, which that day it went live on the BBC website, reached number four in the most read news articles across the whole of the BBC. It got millions of views. It got translated into different languages. It was probably the first Spanish and Portuguese language article on Long Covid.
 
Cos those areas, those language speaking areas hadn’t felt the brunt of the, the, the illness at same time as the UK did. And it kind of, you know, it still pops up like that article was huge and I was flooded and inundated with people looking for more information, looking for help. Have you got a cure? Have you got anything that can help me? And, you know, I, it started a long bit of work for me, which has only really eased off fairly recently, where I, in the last two and a bit years, I have done over 100 media appearances about Long Covid. 
 
And sometimes I ask myself and I think to myself like why use your precious energy on this earth to say the same things over and over again. But like I think that in my illness I had to find meaning. I think as people as humans we feel like we have to find meaning in our suffering. And I think that me articulating my experiences. Knowing that this was unknown. Knowing that what I was doing was raising awareness. Knowing that what I was doing was a positive did help me in a substantial way.
 
And once I had had that BBC article it kind of exploded. I got lots of newspaper requests. I got asked to ‘Good Morning Britain’ I’ve had, I’ve got the unenviable pleasure of being interviewed by Piers Morgan. And, you know, I, I feel a great sense of pride and a great sense of achievement when I think back about how much I’ve done and how much awareness I raised and how much—and it basically, it was a bit of a novelty and it added to the overall unreality in the kind of surreal nature of what I was doing, I think. In some senses it helped me disconnect from what was actually happening. And it gave me a productive way of talking about my experiences in a way which didn't overwhelm me and that I still felt was being productive and useful.