Treatments for Long Covid

At the time of writing (October 2022) there are no approved treatments for Long Covid itself, although some of the common symptoms (for example pain, fatigue, and breathlessness) may be improved.

We asked young people with Long Covid and parents caring for young people with Long Covid about any treatments they had tried to help with symptoms. Sometimes these were treatments that they’d found out about by themselves and other times treatments were prescribed or recommended by doctors. In terms of medicine, these ranged from over-the counter painkillers such as paracetamol and non-steroidal anti-inflammatories (e.g., ibuprofen) to prescription medicines. Young people had also tried treatments like hydrotherapy, oxygen therapy, acupuncture, talking therapies, antihistamines, and a range of vitamins and supplements. Some had also made changes to their diet.

Views were mixed. Some reported that treatments like prescription steroids, melatonin (a natural hormone that helps control your sleep cycle), hydrotherapy, and talking therapies had helped, whereas others reported little improvement or were concerned about negative side effects.

Lucy A finds it very helpful to talk things through with her psychiatrist. She thinks acupuncture has also helped.

Lucy: It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She’s kind of found my way of dealing with things. So, I’m quite creative. And so, if I feel kind of down or anything, I always like play with clay and make something or paint or you know, colour or draw. I do something like that because I’m artistic and I do, I like doing stuff like that. And she’s definitely helped with so…she’d be… She constantly says, as annoying as it is because she says it every session. She always tells me to kind of look at the situation in a different way. And because she says it every kind of session, it’s annoying and stuff. But it’s slowly working and it’s definitely, I’m seeing myself look at more of a positive side of things. Yeah, it’s kind of working it into my brain or something, but she’s very helpful. Yeah.

Mum: Started doing acupuncture, haven’t you.

Lucy: Oh yeah, I started doing acupuncture. It’s weird because they just, they stick needles in places like at the top of your head, which you don’t think they could do that. No, I wasn’t expecting that.

Interviewer: Have you found that? Do you think that’s helped at all yet?

Lucy: Yeah, I think that’s helped, yeah.

Interviewer: And is that something that you’ve found out about for yourselves or did your GP suggest that?

Lucy: We found it out, yeah.

Mum: Yeah, we just got to the point where we’re just going to try and anything [laughs].

Good plan [laughs].

Mum: We’ve had two sessions in the last two weeks. I think she’s coped with more than she was doing before. But it’s hard to say.

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As a GP, Richard was able to access a powerful anti-inflammatory called colchicine, usually prescribed for gout, which he thinks may have helped with his son’s stabbing chest pains.

Richard says that after six months of “hell on earth,” his son is now fairly asymptomatic.

Anyway so eventually the consultant didn’t know what to do, so he said my son needed this morphine pain control, overnight stays, nothing was controlling this stabbing chest pain he was getting, and I was trying to say “Look, there’s some research coming out, we should try colchicine and a few other things,” because I’ve had good success with that, you know, and eventually it’s only recently, in the last couple of months, he’s had something like that and it actually did help and calm him down, but it’s not a licensed medication, so, you know, I don’t think normal parents with families would be able to access something like that, and it did help calm him down and he’s been fairly asymptomatic for the last month or two. But, you know, over the first six months of the year for both of us were just hell on earth, absolutely horrific. Yes, it was yeah, it’s colchicine. Basically, it’s a gout medication you use for treating acute gout. It’s like a—it’s a powerful anti-inflammatory and there’s some evidence, the last few years of coming out to treat, sort of, pericarditis, heart inflammation, and it’s being more widely used now.

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Parents like Lindsey and Beth talked about their concerns around drug side effects, while Richard said he felt that psychological therapy made his son worse.

Lindsey talks about the nightmares her son suffered after being prescribed topiramate, a prescription drug.

She prescribed him a drug topiramate quite recently and it’s another thing that has come from Covid, so Michelle has, has allergic reactions now that she didn’t have before to things and we’re also not sure if Vinnie is having allergic reactions. We tried to push that with the paediatrician to get a test but he was prescribed topiramate which was actually a drug that Michelle had been prescribed as well which was to do with your brain and things like that but Vinnie had such an adverse reaction to it with one dose, he literally slept through the night and was calling, like literally living his day through the night out loud, like vividly in his dream shouting, calling, talking and Vinnie doesn’t sleep anyway at the best of times so I was like I’m not giving that, I’m not giving that again and I just, I said no way, this is evidently not agreeing with him.

And when we looked at the…because the doctor didn’t go through side effects with us at all, when we looked through the side effects it did state that 0.03% of people have this reaction where they vividly live their dreams and can sleepwalk and sleep talk and things like that and I was just like, no I’m not, I’m not prepared to put him through that.

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Many felt frustrated that there weren’t more treatments to help young people with Long Covid. Amira’s GP only suggested multivitamins and she felt they could have offered more in the way of treatment. Her mum managed to get her a referral for some counselling from CAMHS (Child and Adolescent Mental health Services). Catherine and also Jana talked about going to Germany to access a private experimental treatment for their children that is not available in the UK. This would be expensive and very hard to arrange the logistics of travelling, but in the absence of any proven effective treatments in the UK, they were willing to try to get help abroad.

Amira’s GP suggested multivitamins and she felt they could have offered more in the way of treatment. Her mum organised for her to get some counselling.

Have you spoken with any doctors or any other health professionals about it?

Yeah, the GP.

Can you tell me a little bit about that?

They said that like they're going to…like, it gets better by itself.

That it gets better by itself?

Yeah.

Did they tell you what was wrong?

No.

Did they mention the words ‘Long Covid’ at all?

Yeah.

Who was that who said that to you?

The GP.

Okay, did they offer anything that you could do to manage it or anything like that?

They said I could have multivitamins.

Some vitamins?

Yeah.

What sort of vitamins did they recommend?

Like, multivitamins.

Okay, what did you think about that?

I thought it was a good idea, and like I've been having vitamins, but like it’s not really making a difference.

Yeah, and are you eating normally as well, I'm just thinking like with the vitamins?

Yeah, I am.

Yeah. Did they offer…did you get referred anywhere else?

No.

Did you…did they sort of say you know, ‘Come back and we’ll refer you somewhere,’ or anything like that?

No.

Did they give you a reason—well firstly I guess, did you ask for a referral or did you know that there was somewhere you could be referred?

No, I didn't.

Okay, and so did they give any reason like why they weren't going to refer on anywhere?

No.

Just that it got better by itself?

Yeah.

Okay, how do you think how do you think your mum felt about that?

She was upset.

And how often are you seeing the GP about it?

I just saw the GP once about it.

Okay, yeah. Was there anything helpful, unhelpful about the way that the GP talked to you about it?

I think the vitamins helped a bit, but like I think they could have done more.

Yeah. What would an ideal GP visit have been like?

Like, if they would have gave a blood test or something.

Yeah, why a blood test?

Because maybe like something else was wrong.

And why do you think a blood test would show that?

Because like it would show like everything that’s like in my blood and like if anything was wrong they could have like fixed it.

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Long Covid clinics

This section explores children and young people’s experiences with accessing specialist Long Covid clinics. These included both virtual and in-person clinics. They often involved a...