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.
 

Yeah, so there is a group of admins on the page.

We haven’t moved to a point yet that we request permission from everyone before they post, but if anybody in the group sees something that they don’t agree with, that gets reported through Facebook’s process to the admins to review it and we discuss in the group do we think it’s a positive, do we think it’s valid to be in the group and do we think it has an impact positively on people’s recovery or is it just misinformation, which some of them quite often are, or just negative with no kind of benefit to the individuals in the group, bearing in mind that some people joining that group, they have just had the doctor say to them you’ve got long Covid, versus some of the [members], we’re kind of long-haulers in terms of twelve, fourteen months of having long Covid. So, we’re recovering to the point that we can help those that are newly diagnosed, people who don’t have the, the capacity or the energy to spend on being able to validate the sources.

So, you feel like those of you who have got more experience and are long-haulers can steer people towards the more validated sources of, of information?

Very much so, yeah. People, people come into the group and either they, they post their main symptoms and we can help signpost to either other discussions that people have had about kind of their symptoms or resources or if it’s generally I’ve got this resource, I’m sharing it, and then if the admins don’t think it’s of value, we obviously speak to the individual and say, look, I don’t think this post is bringing anything to the group, or we feel that this actually, given the mix of people in the group, this could have quite an impact on, on individuals, not in a positive way. But it’s, yeah, I think it’s…

That sounds like…

…pretty…

Sorry, sorry, on…please on you go.

I was just saying, yeah, it’s that kind of responsibility as the admins to think if I was as unwell as I was at the start, I didn’t have somebody able to think for me in that way so I…you need that, kind of you rely on that ability for people to think, actually, no, this is not helpful, this is not good to be kind of…and this happens in other conditions as well, people either providing misinformation such as some of the stuff that you see about vaccinations or some of the kind of, well, false information that is shared about those and I think that’s why the group is very conscious that we avoid that kind of discussion that comes with that. This information has not been validated medically, there is no source for that, it doesn’t have a place in the group.

That sounds like that’s potentially quite a lot of work for those of you who are involved in the [group].

It can be, yeah, it can be quite a lot of work both with validating who’s coming into the group, we’re being quite restrictive that this is Scotland, given the disparity between Scotland and England with long Covid clinics, I don’t think it’s particularly good for anybody in Scotland to be hearing of this great experience that England are having with clinics when Scotland have said we’re not proceeding with those.

Some people with, …have got information from social media, so there’s quite a lot of, sort of Covid support groups.

Yes.

Have you had any experience of those and kind of what do you think about it?

Yeah, I’ve joined one of the Long Covid support groups, to be honest, I only look at it very briefly now and again, because I find it actually makes you more anxious, because there’s a lot of people in it saying that they’ve been ill for like over a year, you know, started to feel better, then got worse, now they’ve been referred to like, you know, get brain scans and all this kind of stuff, and it just makes you feel like…like really more worried, to be honest. I actually tend not to look at it.

Is there any positives that you’ve found from those groups or has it mostly, made you feel more anxious?

It’s hard, because I don’t know how…I don’t…I’m not really good with Facebook, I don’t really use it normally, so I don’t know if you filter it to find out, oh, I maybe want to look at something that could help this symptom, so if you could maybe…if you can do it that way, I’ve had a look about, I just can’t work it out, so I just seems to be [coughs].

So, it’s…

…for me, it’s too dangerous, because you don’t know if you’re going to read something positive or something negative, because I only want to read something that’s supportive, like going to say, “Oh, if you’ve maybe got really shortness of breath, I’ve found this and that works” or something, but it’s not a case of, I can find that, it’s more a case of, you need to trawl through everything, and you’re reading stuff, it’s like really quite scary as well, so I just don’t know that, really.

So, in terms of information, have you been in contact with any of the support groups, then, for Long Covid?

No.

No? And is that, do you think any of those would be at all helpful, is it…?

It’s not something I've considered, but that’s probably more just me being me. You know, I tend to kind of internalise things, and then kind of, you know, come up with a cunning plan myself, rather than engage with support groups. It’s not something I've ever done before, and I…is there a reluctance to do it? Probably a passive reluctance, rather than an active reluctance. You know, it’s just not something I would consider doing, rather than something I would be set against.

Yeah. And in terms of other information about Long Covid, have you picked up quite a bit from different parts of the media, or from elsewhere?

So, from the media, from lots of Googling. again, it’s, because it’s a far better understood condition, you know, where, anytime I do search and try and track things down, I always seem to land on ME or, kind of, CFS support sites, and stuff, rather than anywhere else.

So, I've never actively engaged with anything, I don’t join forums, or you know, discussion groups. But I’ll happily pull off every piece of information that they publish, and go through it and see, you know, what I think may work for me and what won’t. 

You mentioned there about social media and about the role of patients in, in speaking about Long Covid. Have you sort of engaged in any of those online communities?

So, I have got the Slack channel for Body Politic one, I think? and I’ve taken part in a couple of surveys because I think it’s actually an amazing achievement to have got like the patient-led research that’s done there. And it’s obviously using the skills of the people that do that patient group. I’m not a participant on the forums though and I actually don’t look at it anymore because I find it quite upsetting. And I don’t want to dwell in the negatives. And I think there’s maybe a kind of…this really relating to survival guilt. I know that I am not as bad, as badly off as some people have, who have Long Covid, so I don’t want to, I don’t want to make people feel bad because I’m feeling better than they are, kind of thing. Like I’m feeling [recording breaks up]. That’s a bit hard to explain. Yeah, so I try…I don’t spend much time on social media in general but I particularly try not to get sucked into thinking about it all the time because I don’t think that’s very good for my mental health.

And I appreciate you said that it is, it can be upsetting so you don’t have to answer if you don’t want to, but was there a time when you were spending more time on social media? And particularly on sort of Long Covid groups? Or is that just something that you’ve, you’ve always kept at arms’ length?

I mean, I’ve never had a Facebook account and I stopped using Twitter even for work a couple of years ago. So, if I was going to look, if I was going to say to go to the Slack group it would be for a specific thing. Like I wanted to find out is this app any good, or has anyone got experience of this symptom or something like that. So, I try and do it as a targeted search but even that, I could find myself like on bad days gravitating towards that and it doesn’t, often doesn’t give you anything conclusive. And that doesn’t actually help. So, I try not to do that. You know, sometimes I look at articles as well, you know, scientific articles and so on which is maybe [laughs] slightly better for my mental health. But I still am trying to kind of get away from that because I think it leads to this cycle of worrying. Because you’re always reading and thinking, “Oh right, that’s about that group of patients, could that be me as well?” And because my background’s not in medicine I really can’t interpret a lot of the detail of it. And I guess I’m trying to get my head out of that space a little bit.

And then also having the groups has been a major lifesaver because that, if I didn’t have that then I would have nobody to speak to.

And a few people have, like a friend of mine in fact who had Covid around the same time as me, she wasn’t in any of the groups and she’d been ill the same time as me, and I was telling her, “You need to be in these groups.” She was really down, and then when she joined the groups she was like, “Oh yeah, I should have been on these before [laughs] because suddenly it was like, oh I’m not so alone.” You know, so I don’t really look to my friends and family for the support other than maybe more practical support, if you like. But the actual like really emotional support really comes from the groups. And I don’t expect it of people I know. I mean, I don’t say they don’t give it, but I’m not going to them with it, laying it all on them.

Because they can’t really fulfil it. Especially, as I say, people haven’t seen me, so they still think of me as this other person, because I’m not the same person, that I was out with them last February, [laughs] you know, going for lunch and stuff. I wasn’t…I’m not that person at the moment, so yeah.

And then I started paying more attention to other articles in the media. And one of those led me to a medical Twitter – I don’t have a Twitter account, but a lot of medics do. And there was a lot of chat about Long Covid, on there. And I ended up signing up, and asking someone, in a, just feeling completely desperate at that point, asking if I could join the group. So, they’d set up, a small peer group, to help with, pacing and management of symptoms. And she was so lovely and so kind, and introduced me to the Facebook group, with doctors.

So, I found, [group] I found, the doctors’ group, and a larger UK wide group. And, for me, these groups were really helpful. One of the things that was, difficult for me was, feeling like I was going…wondering if symptoms were in my head, because they seemed so preposterous, not understanding things, and feeling quite alone, because I didn’t know anyone else who had Covid, at that point. So, meeting other people who had the same symptoms, in the same order, at the same time, was just, my mind was blown really. and it gave me so much reassurance, and I suppose, some validation as well, and also, support. And then, you know, as I got better, I paid more attention to…in the doctors’ group, lots of symptoms were shared, and the, you know, there was a lot of discussion around what’s going on, and what treatments might help. And that was pivotal in my recovery – getting onto a beta blocker for the tachycardia. It was life-changing, literally.

Getting on a good antihistamine, as well, for the, all of the Mast Cell symptoms, that made a massive difference. and there’d been a period when I'd had really bad hayfever, before I found any of the Facebook groups, and I took, antihistamines for a couple of weeks, and I felt better. And afterwards I thought, “Why did I feel better during that period, could it have been the antihistamines?”, not really understanding the mechanism for why that would be helpful. But then, so through one of these groups, I found out, and I got onto something regular, and it really, both of those medications have been life changing. Yeah, so most of my learning, I guess, about Long Covid, has been through these groups.

So, are you able to articulate the ways in which you’ve found the Facebook group most helpful?

Yeah, certainly. So, for me, it’s a variety. It’s kind of purely on a symptoms basis as we discussed with the symptoms, Long Covid is very varied, and a new thing presents itself every week and you think what a gift Long Covid just keeps giving and it’s very helpful to see, okay, you’re not alone in that, somebody else has had that, somebody else has experienced it and somebody else may be able to advise what worked for them and what didn’t. I think that’s been really helpful when I think I mentioned yesterday as well you have to become the expert in your own health and sometimes you don’t want to trouble the GP with it. You, you spoke to them last week, something else has just popped up, is it something that I maybe need to deal with urgently or if in this case, okay, yeah, try and rest and that might go away, and I think it’s been really helpful to consolidate the symptoms as well. Often brain fog can really impact on your memory, so it’s often a case of, oh yeah, I’ve had that, I just, I just thought it was by the by and actually it helps you kind of build them into a list that you can actually share with people that you’re not speaking to about it every day.

And then again just kind of it’s all over Scotland, it’s nice to see that your health board isn’t the only one that’s not doing it the way that you kind of hoped they could do it. I know looking at the success of some English Long Covid clinics, it looks really great so why haven’t Scotland done that? Why haven’t they done that where I live? But you look at actually only the major cities have done it, so there’s a lot of other people that aren’t having it, and there’s that almost comfort in knowing it’s not just me. It’s not just my area, it’s not just where I live, there is a lot of other people in that situation.

And is that…I mean, are… do you get specific kind of medical or other…there’s, you know, specific advice for people on the group?

Yeah, so generally it’s been kind of people have put in a symptom or this is how they’re feeling,” Anybody got kind of any experience of managing that symptom?” Generally, it’s “Here’s what I’ve done”, but a lot of people generally say, “but it’s still worth raising that to, to your GP as well”. So, people are very keen not to overstep that mark and to be giving medical dispensing advice, but also at the same time, “Oh, I tried this”. Certainly, for myself with the chest pain that I spoke about, that kind of belt around the chest, that was quite a challenging one for me and somebody else replied and mentioned gabapentin, for nerve pain and that’s how I ended up getting onto my list of medicines.

So, it’s quite a good resource for information, it’s, I’d never treat it as the same as calling 111, or going to a GP, but I think it’s that early stage of, okay, this is something that I can just manage or is this something, okay, no one else has had that, this is probably worth treating more urgently.

So, it’s been…

And it’s been helpful as well then in hearing about some things and then being able to take those to your GP and discussing with her, yeah?

Yeah, very much so, different, even different medication options or just kind of certain tests that people have had or findings that they’ve had, and if you’re in a similar kind of age, gender, lifestyle group, it’s quite helpful to see actually a few other people have had this. It’s not empirical evidence, I can’t give a research paper, but I can say actually a few people have mentioned this, would you consider it or can you consider it? And I think Doctor…my GP’s been very open to that and very kind of willing to listen to anything that I provide. It’s not a case of, oh, it’s on social media? No, I’m not going to listen.

And then when you, when you feel like you can, and I know this can be quite a step for some people, when you feel like you can, join the groups on, on social media. Look out for a group either local to you, to your kind of NHS area or to the country you’re in or even the, the area that you’re in separate to that. What I find is I know when you’re tired, you’ve not got the energy, social media can be very draining, but when you’re at a point when you feel that you can, it has been hugely beneficial to my recovery, just to have that safe space, a sounding board, just a record, helping to have a record to look back and think, oh, what, what date was I suffering that symptom? Oh, yeah, I had it for that period, it went away because I then posted four weeks later to say I’ve solved it, and this is what I did.

So make sure that you understand joining it can be quite taxing if you have very little energy, and it can be quite draining socially but when you are able to join a group to get some other ideas or just other people that are in the same position as you.

And just within that, from what you were saying earlier, it’s not just any social media but finding the right form of social media, maybe a more protected form of social media?

Yeah, generally, so if you consider what you’re going to be discussing, this shouldn’t be on a public group. This should be on a private group, so you should be looking for a group that you need to request to join.

And they’re going to have rules, they’re going to have kind of rules about how they engage, what’s allowed to be discussed. Make sure you’re looking at those before you either join or before you contribute to anything on those pages. Just make sure that you’ve done your, your checks.

And like you say, if you’re ever looking at them and you’re not sure, you can reach out to the admin on the pages and they can discuss and answer questions before you’ve even, joined the pages as well.

Because somebody who was less experienced with social media could potentially wander into a situation where they’re much more public about some very private…

Correct, yeah.

…feelings and…

Yeah, it’s it could be that their responses to questions or it could be stuff they post, we are a private group, nothing is shared beyond the group, and even if you look on Facebook, you would only find the name of the group you wouldn’t find any content discussed, unless you were a member.

So…

That is because I have…

So when you were recommending that people reached out to use social media when they felt able to, it’s, you’re particularly recommending those private protected groups?

Yeah, definitely private groups on, on Facebook, rather than public groups. There is both an element of their private information being open to all, these private groups are very much this is for people with Long Covid and this is not shared. Part of the rules is that it’s not shared with others that aren’t as well.

But again it’s something that maybe if somebody is not particularly able to think for themselves at that point or not able to even bring themselves to doing it, I would say nearly all these groups are very aware and very responsible in that way that somebody can join on behalf of somebody if they need that support if they’re supporting somebody even in a caring position or even just as a kind of a supporter of somebody, we often have parents joining on behalf of their children or, or carers joining on behalf of their, their responsible people that they’re responsible for.

So yeah, it’s very common to see, my partner has it, he’s not able to join, he’s not well enough to join, but I want to join to see these conversations, to understand what conversations I should be having with them, with their GP, and to just help me in terms of building up my knowledge base.