Michael
Michael is 22 years old and lives with his parents. His mother also has Long Covid.
Michael began to have Long Covid symptoms after May 2020. He has since had to return home from university and suspend his studies. It was not until he saw a cardiologist that specialised in PoTS did Michael get medication that helped him to “stabilise a little and regain some quality of life.” Michael was interviewed in May 2022.
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Michael realised he might be unwell when he began to struggle to exercise like he usually would. He would go on cycle rides and return in a cold sweat and had the feeling of having overexerted himself. Michael recalls that he has ‘never been the same since’ after the last cycle ride he took on the 25th of May 2020.
Michael developed Post Tachycardia Syndrome (PoTS) and described a ‘horrible sickly feeling’ in his legs whenever he exerted himself and post exertional malaise. His symptoms mean he is unable to sit or stand up too long otherwise it will cause his symptoms to worsen for the rest of the day, causing tachycardia, difficulty sleeping and palpitations. Due to these symptoms he has been unable to continue his degree and has had to return home. Michael will have to suspend his studies for a 3rd year. Michael’s symptoms have meant he has had to remain at home which he finds boring as he isn’t used to doing nothing and would prefer to be at university progressing in his degree.
Michael’s mum also has Long Covid and he feels his dad is under more pressure with both of them being unwell, which has meant he has had to pick up the slack. Michael is no longer able to help as much with normal everyday things.
Michael sought medical attention for his symptoms and spoke to a Long Covid specialist who agreed he most likely has Long Covid. He also received referrals for neurology and rheumatology but he found his neurology appointment unhelpful since he was told the source of his headaches was stress, despite informing the doctor he did not feel stressed.
Michael also saw a cardiologist for his PoTS but was once again told his symptoms were stress related. It was not until he saw a cardiologist who specialised in PoTS that he was able to get medication that helped with his symptoms. He said that this allowed him to “stabilise a little and regain some quality of life.” He recalled that it was nice to be believed and speak to someone who did not pretend to know all the answers to his condition. Michael also took part in research for Long Covid in Germany and felt it was nice to meet other people with Long Covid as they believed him automatically.
Michael feels fortunate that he got Long Covid at this stage in his life instead of when he was doing his GCSEs or A levels, and feels sorry for children with Long Covid. He hopes to be able to return to university and complete his degree and wants young people with Long Covid to not worry about their education because “education doesn't expire at sixteen. So […] focus on your health” and return to your education later.
Michael pushed himself to “keep going” at first. He thought that taking his mum’s advice to stop pushing himself might have stopped him from getting “more severely unwell.”
Michael pushed himself to “keep going” at first. He thought that taking his mum’s advice to stop pushing himself might have stopped him from getting “more severely unwell.”
So, I think it helps and also yeah, it is difficult not to get frustrated with yourself like you just, I think initially for the first, for the decline into Long Covid, which is very much associated with pushing myself and thinking, it’s ridiculous. I just, you know, this is like just keep going. And I think doing that, and my mum was the first person who told me to like don’t do that. That’s not a good thing to do. You know, that’s like that’s often what happens when people develop ME. So, she was the first person to kind of tell me to stop, which was really important. I think that without her telling me to stop, her kind of clinical knowledge and from her research then I think I would’ve just kept, kept going and made myself feel really, really severely unwell. So, I’m – or more severely unwell than I am – and so I’m very grateful for that.
Michael learnt about medications from others with Long Covid. He said that trying things and hoping they work is “all there really is with Long Covid.”
Michael learnt about medications from others with Long Covid. He said that trying things and hoping they work is “all there really is with Long Covid.”
I think that things like, things that perhaps aren’t, many doctors aren’t really totally aware of. So, for an example mast cell activation syndrome and it’s one of these kind of newish things that’s kind of not great, not very understood and the diagnostics aren’t really there and they’re very difficult to do. So, I think that people kind of spreading awareness of things that people can try because that’s all there really is with Long Covid. You can try some things that you hope might alleviate certain symptoms and just hope that they work.
Things like LDN which is low dose naltrexone and that’s helped a number of people. That’s also got a history of kind of helping patients with myalgic encephalomyelitis yeah, so I think this sharing things that people can try and then they can ask their own doctor, oh here’s this study, can I try, that indicates antihistamines are helpful, can I try it? And I think it’s kind of people help each other they help advocate for each other, basically without actually being there.
And has anything ever been suggested to you and then you’ve gone to your doctor to say, could you try that?
Yeah, I’ve tried a number of things and I think that because it’s probably private, it’s kind of easier to try things. Certain things are very expensive, and you wouldn't be, I wouldn't be able to you know, get privately. But it is just like a quick trial of for an example a calcium channel blocker which helped me for a time then that’s helpful to just kind of have the opportunity to try it, particularly with POTS. Many GPs I think don’t feel comfortable prescribing things like midodrine and things like that. It needs a specialist input. So, yeah.
Michael, a young man in his 20s, said doctors need to believe there is a biomedical cause for how people with Long Covid are feeling. They also need to have the confidence to be honest and say, ‘I don’t know what’s wrong.’
Michael, a young man in his 20s, said doctors need to believe there is a biomedical cause for how people with Long Covid are feeling. They also need to have the confidence to be honest and say, ‘I don’t know what’s wrong.’
I think that primarily it’s believing that what the patients are saying is how they’re feeling. But it’s also believing that there’s a cause a biomedical cause to it that you just don’t know about. I think that’s really important. It’s not enough to say I believe you’re feeling that way. You have to say, “I believe you’re feeling that way and I believe there’s a cause. I just don’t have the answers."
And very, very few doctors have said “I don’t know” to me. And even though I know that they don’t know, they still don’t seem to be able to say that. And that seems very strange, but it seems like such a simple thing to do and it’s not a failure. It would actually be a, it would be helpful for someone to, I know that. It would be helpful for doctors to have the confidence to say, “I don't know what’s wrong.” But here’s a number of things from the limited evidence you can try and it’s, you know, safe by their own clinical judgement. But I think the main thing is, I believe you and there’s something wrong, I just don’t know what it is.
I think that’s the main message I can give. But also, that you know, improving symptoms and all these things. Trying things, that’s what gives me hope, personally. I think if I was kind of stuck at home and I wasn’t trying things and I was just waiting for time to make me better, which I was for the first year and a half, I thought, oh I’ll be better in a couple of months because that’s what I’ve been told. But the belief that you will get better will not make you better. I think that’s really important. It gives you hope and hope is really important in every illness. But I think that being realistic and honest to patients and not trying to trick them into kind of making themselves better by some strange, psychological mechanism that hasn’t, that’s completely unproven. That’s very unhelpful. And I think unfair to patients.