Sources of information on Long Covid

We asked people if they had looked for information on Long Covid and what they thought of any information they had been given or found. This page covers people’s experiences of:

  • Finding information about Long Covid
  • Making sense of information about Long Covid
  • Taking part in research and other ways of sharing information about Long Covid

Finding information about Long Covid

Many people had found it difficult to find information and guidance that could help their recovery from Long Covid. People said searching for information could be frustrating, particularly when there was so little information about Long Covid early in the pandemic (in 2020 and early 2021). Anthony said: “I basically followed my nose on the web” to find more information. Hazeem had not looked for information about his loss of smell. He said this was because: “I’m bad in researching and reading… if someone tells me I would listen. Reading is not my thing”.

Robert was unable to find any information that would give him some hope that he might be able to regain his sense of taste and smell.

As more information on Long Covid became available, people said they had looked at a range of different sources. These included:

  • NHS websites
  • Social media
  • Webinars
  • Scientific research articles
  • Books about Long Covid
  • Health professionals they knew personally

Ricky, Judy and Faatimah had read the NHS ‘Your Covid Recovery’ pages online. Fiona A, Sarah and Frances talked about watching webinars and following the ZOE Covid study (a large research study on people’s experiences of Covid-19). Emily mentioned watching TED Talks. Golda, Christian, Michael, Judy and Anthony had read scientific research papers to try to find information that might be helpful to their recovery. Faatimah said, “regularly I check the Long Covid hashtag on Twitter and there you can find everything – people’s opinions, anecdotes, professional opinions, journal articles [so] that’s the main way I keep informed.” Frances said that her “professional friends” were her main source of information, particularly a GP friend who has an interest in Long Covid.

Some said it was hard to find the right level of detail about their condition. Sophie said it had been “very, very difficult” to find clear information online because people with Long Covid had “so many different kinds of symptoms” and there were no clear answers about what to expect. Iain said he wanted “very simple instructions [and] fact-based” information but he hadn’t found this.

Judy found that much of the guidance although well written lacked the practical detail she was looking for.

Fiona B commented that levels of information about Long Covid seemed to go up and down over time: “there seemed to be a flood of information about Long Covid, and then it feels as though it’s died off a bit since [the Omicron variant] popped up”. Emily, interviewed in July 2022, spoke positively about a book called ‘The Long Covid Self-Help Guide’ which she had read.

Emily said a book about Long Covid was a “game-changer for her”. She found the case studies and recommendations very helpful.

Making sense of information about Long Covid

When people were experiencing deep fatigue and very low energy levels, they found it difficult to concentrate and to read and understand complicated information. Anthony said that there is such a huge amount of information that “just engaging with it is mentally exhausting”. Golda had also found it difficult to read research articles at first: “I started to go back onto my Google Scholar [and] even if it meant reading something a few times till I absorbed it and even then, not understanding what I was doing and slowly, slowly, slowly it started to sort of filter through and I started to understand”. Sometimes looking for information and trying to understand it could make people’s symptoms worse.

Sarah sometimes felt more unwell after looking at a screen to read information about Long Covid. She had to weigh up the benefits of spending time on screen against whether the information she was reading was relevant or helpful to her.

How information was presented was important. Christian was interested in what was produced by “trained professionals” because he wanted to focus on information that was “clinically based, rather than hearsay”. Ben talked about how he worried that some information online was “quite inflammatory”, “attention-grabbing” or inaccurate. He thought information in the papers had improved but he worried about ‘fake news’ online.

Ben describes how it can be difficult to decide if information online is accurate or a misleading ‘waste of time’.

Those who tried to follow new research about Long Covid said it had limited benefit to them at that time because it was still at such an early stage. Michael said: “I’ve done some research [but] I haven’t been completely engrossed with research [because] none of it is completely definitive or anything”. Diane said she had looked up information on Google, NHS webpages and some research articles. She added: “I didn’t get too embroiled in it, you know, it was like for some people it comes back, some people it doesn’t, and it takes longer for some [and] I think that’s the main take home message”.

Taking part in research and other ways of sharing information about Long Covid

Being involved in making and sharing of information about Long Covid was also important to some of the people we spoke to. Frances said she regularly logged her symptoms on the ZOE Covid study app. She felt it was important “because this might help somebody else if I keep reporting my symptoms”. Michael had travelled to Germany to take part in a Long Covid treatment research study. Zubair had become a volunteer ‘Covid Health Champion’ within his local council area. He said, “[the council] pass on information to us for us to pass it to the community, and anything I find about Long Covid, or anything to do with Covid… I’ll pass it on”. Claire was very involved in campaigning about Long Covid and sharing information. Callum had talked to the media about having Long Covid. One of his first interviews in 2020 had been accessed by “millions” of people around the world and helped to raise understanding.

Claire described herself as “very active in the Long Covid community”. She set up a Facebook group, was an active campaigner and was involved in setting up the first global conference on Long Covid.

Callum had done many media interviews to raise awareness about Long Covid. It helped him to feel that he was doing something “positive”, “productive and useful.”

Online and peer support

We asked people about their experiences of looking for and receiving peer support for their symptoms of Long Covid. Peer support is given and received...