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"It's a roller coaster" — Long Covid sufferers find support in community

As Long Covid sufferers turn to each other for solace, scientists are trying to understand the roots of their condition.

Covid-19 virus 3d-mallinnettuna
Finnish researchers have started a study to try and better understand the mechanisms behind so-called 'Long Covid'. Image: Sasa Kadrijevic / All Over Press

People grappling with long-term symptoms after coming down with Covid-19 are flocking to a Facebook group to find understanding and support for their situation. They are also calling on the medical and scientific community to better recognise their condition and to develop treatment options.

Members of the peer support group all report similar symptoms, including shortness of breath, limb numbness, muscle cramps, a dry cough and general fatigue.

The founder of the group, 34-year-old IT professional and Vantaa resident Joni Savolainen, is himself a Covid long-hauler — someone who continues to suffer lingering symptoms weeks or even months after coronavirus infection. More than 200 days after first displaying symptoms, Savolainen says he continues to experience the ill effects of the disease.

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Joni Savolainen istuu puistonpenkillä.
Joni Savolainen says he continues to experience symptoms more than 200 days after first contracting Covid-19. Image: Ilkka Klemola / Yle

"It was on-off symptoms, it was like a roller coaster all the time. I had two to three days without bad symptoms and then they came back," Savolainen told Yle News.

He said that while he has since returned to work, he is not able to function at 100 percent capacity.

"If I work more than 50 percent or more than five hours, I get the symptoms back. Like the chest pain or [my] heart burning or different neurological stuff, like [you feel] small bugs walking around your body but there are no bugs," he explained.

You can listen to the All Points North podcast where we discuss Long Covid via the embedded player here or via Yle Areena, Spotify, Apple Podcasts or your usual podcast player using the RSS feed.

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Audio: Yle News

Savolainen added that although he tried eight times to get tested when he first began to experience symptoms, he was unable to do so. This was during the spring when Finland imposed a high threshold for administering tests. That strategy has since been changed and tests are more easily available for people who have even mild symptoms.

When he eventually got tested 15 days after his symptoms first began, the swab test returned a negative result. His diagnosis was finally confirmed more than 100 days after he first had indications that he was infected.

"I got a clinical diagnosis from an infectious diseases doctor from HUS Meilahti, Helsinki area, on day 104. The symptoms were pointing to Covid and I had changes in my lungs."

3,000 members in support group

Savolainen said YouTube videos he posted about his experiences immediately attracted attention from others going through the same ordeal. People reached out from as far away as Kemi and Rovaniemi.

"Then I understood that this is something that has not been told by officials — that these weird symptoms, numbness and tingling is happening to a lot of people. Then I understood that people need support from each other because they don’t get the support from the doctors."

Not long afterwards, he set up a Facebook support group that has since grown to more than 3,000 members.

"I would say that our support group has saved a lot of people’s mental health because they know that they are not alone in this situation and I would say that we have had some reports from doctors that they are alone with Long Covid. They don’t have any guidelines [for] how to treat patients with prolonged illnesses and they don’t know what to do."

Specialist: Condition not formally classified

Hanna Nohynek, a vaccinologist with the Finnish Institute for Health and Welfare THL, told Yle News that understanding and managing Long Covid is complicated by the fact that the disease has no official classification. This means that different physicians are using different benchmarks to identify the disease and may even be using different names to describe it, she explained.

"People report all kinds of symptoms from pain, to crawling sensation on the skin to memory loss and doctors don’t necessarily know how to classify them," she added.

Nohynek said that there could potentially be serious implications for public health providers if all of the people who report prolonged symptoms continue to do so for the rest of their lives.

She noted that while symptoms from other serious infectious diseases like influenza and dengue subside with time, influenza and Covid have been known to create lasting lung damage. However she stresses that not enough is known about Covid to be able to anticipate its long-term burden on healthcare systems.

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Hanna Nohynek, ylilääkäri, THL
THL vaccinologist Hanna Nohynek. Image: Markku Pitkänen / Yle

Although people suffering from Covid-19 symptoms long after infection feel isolated with their problems, the scientific community has taken note of the issue. Nohynek says there has been some discussion about the after-effects some Covid-19 patients continue to experience long after infection.

"What we know from the literature and from experiences from other countries is that approximately 10 percent of people who have had covid experience prolonged symptoms, regardless of how serious that Covid-19 disease was. And therefore there are research initiatives around the world to look into what kind of symptomatology there is and what the reasons might be and how to aid and help these people to get along with their daily lives," she told Yle News.

Finnish researchers studying long-term symptoms

Nohynek said that the problems are also being scrutinised locally in Finland. A group of research scientists from the Helsinki University Central Hospital has begun studying people who are still living with the after-effects of the disease.

"They are studying longitudinally the health of patients who have been either in an intensive care ward or on the hospital ward and then they have a control group of people as well as people who have been diagnosed as having SARS-coronavirus by PCR [swab test] but have not been hospitalised. So they’re following up these people to see how they thrive over time but it’s still too early to say what the outcome will be."

Yle News asked the THL expert whether or not a Covid vaccine could help alleviate the difficulty experienced by long-haulers like Savolainen and others in his Facebook support group.

She said that while vaccines usually prevent infections, some data from experiences with Human Papilloma Virus (HPV), which is thought to contribute to cervical cancer, suggest that a vaccine may prevent existing infections from accelerating and causing cancer later on. She cautioned that it is far too early to tell in the case of Covid-19, since there is no clear understanding of the disease mechanism and there is as yet, no vaccine.

However Nohynek sounded a note of cautious optimism about two vaccine candidates currently being reviewed by the European Medicines Agency (EMA). She said that hopes are high that the two contenders will submit the results of phase three trials in November, after which it could take about one month to be licensed for distribution. This means that -- if all goes well -- two licensed vaccines could be ready for use by the end of the year.

"And to my understanding both of these companies have already prepared a lot of the vaccine and they’re putting them in phials so on the day that they do get the permission for large scale use, they will be ready to ship them out. So from that sense I would say that from early next year we would be able to start the vaccinations."

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