For nearly a minute, TikTok viewers can hear the person crying over the sound of a running shower, complaining that they “can’t even describe the pain.” The video is covered with a large speech bubble, obscuring the patient’s face. Guiding the videogave gastroenterologist Dr. Carlton Thomas a candid and haunting caption: “The pain of MonkeyPox is real.”
Thomas has been routinely posting about monkey pox since late June, meaning he started sharing information about the disease with his almost 270,000 TikTok followers weeks before the World Health Organization (WHO) declared it a global health emergency. “I think hearing real-time suffering and seeing people with real stories about what’s really going on helps dispel the false story that this is a painless disease and shows how serious it is,” he tells londonbusinessblog.com. “This illness is not to be taken lightly, and these videos bring that point home.”
Thomas is just one of many medical professionals who use TikTok to warn users about the risks of monkeypox, share vaccine information, encourage testing and combat harmful misinformation. It’s a social media phenomenon that’s not much like what we saw during the early days of the COVID-19 pandemicwhen doctors and other health professionals proved to be an indispensable best public health resource.
Now, two and a half years later, doctors, whose advice on all things COVID-19 has won them huge following on TikTok, are once again using their internet literacy to deal with the monkeypox outbreak.
Certainly, monkeypox is not nearly as easily transmissible as the coronavirus and is rarely fatal (although patients often report debilitating pain due to the signature rash). As of Monday, the US has confirmed at least 8,934 cases of monkeypox in nearly every state, according to the Centers for Disease Control and Prevention (CDC). However, that number will likely be a huge undercount, as testing is still difficult to access for many.
The monkeypox virus spreads primarily through direct contact with infectious sores, scabs, and bodily fluids. The majority of people who have contracted monkeypox so far in the US have been men who have reported having sex with men (although it is not yet clear whether other activities, such as close physical contact with lesions or other bodily fluids, lead to transference).
It can also be transmitted through close contact with recently contaminated materials, such as bedding, clothing, and towels.
But that guidance doesn’t offer much useful advice other than limiting sexual partners. And a large number of TikTok users are not sure what risky contact is. Understandably, most people will hear about a virus that can cause extremely painful, clear-cut sores that can last for weeks and immediately wonder what they can do to prevent them from contracting it. Common things like trying on clothes in a fitting room, using a gym towel, going to the nail salon, or sitting on a public toilet seat have all become sources of anxiety. “People are very concerned about getting it in normal situations,” said Dr. Katrine Wallace, an epidemiologist with nearly 268,000 TikTok followers. “It is very unlikely that you will get monkey pox in an informal setting like a shop or a coffee shop, public transport, something like that. It really does require very close contact, such as having sex or actually touching the person’s infected rash.
Since people spend money more and more time on TikTok, it makes sense for users to turn to the platform to find answers. As of Tuesday, #monkeypox had 1.2 billion views on the platform, while #monkeypoxprevention brought in 7.1 million.
A big part of the TikTok doctors’ mission is to dispel the dangerous, homophobic story that monkeypox is a disease that only gay or bisexual men contract. Since the virus has mainly distributed in the US by men who have sex with men (MSM), officials must guard the fine line between wanting to allocate resources to the highest-risk community while avoiding the false message that it only spreads between actively sexual gay men.
“When I started to see those cases brewing [in Europe]unfortunately the way it was presented, that they noticed it was mainly happening to gay men, I just knew there would be a bias, that everyone would attribute it to just gay men,” says Dr. Berry Pierre, an internist with 29,000 TikTok followers.
That could deter people from coming forward with potential cases and avoiding testing to avoid the stigma, Wallace adds.
“It’s just a shame that the coverage has kind of become the main point and not managing the public health emergency,” she added. “There is nothing biological about MSM or being gay that puts you at greater risk for monkey pox. Coincidentally, it spreads in these very highly interconnected social networks.”
The need for easy-to-understand videos comes at a time when some say the government is failing in its response to contain a virus — a particularly disturbing claim given that the US is home to the largest monkeypox outbreak in the world.
It parallels what we saw in the early days of the COVID-19 pandemic, when many found long wait times for tests and admissions. So far, the federal government has shipped more than 600,000 doses of the monkeypox vaccine, called Jynneos, across the U.S., according to the Ministry of Health and Human Services. There are millions more on the way, but it will take months for those doses to make it through manufacturing and distribution.
“We haven’t done the best job getting the message across, especially from a public health perspective,” Pierre says of the monkeypox outbreak.
The WHO declared the outbreak a global health emergency in late July, which some considered delayed. President Biden last week too appointed a national monkeypox response coordinator to lead the administration’s strategy and increase the availability of tests, vaccines and treatments. Days later, the administration official explained the monkeypox outbreak is a public health emergency.
That has led some health experts to worry that the US is running out of time to… contain the outbreak— a fear that speaks of the importance of social media right now.
“One of the reasons I got on social media — and I kind of blame my profession — is because we weren’t on social media to provide health education,” Pierre says. “We allowed others who don’t really know what they are talking about, we let them be the voice of what is right. So that’s why you had this depth of misinformation out there and even misinformation.
Spreading false information has become commonplace. Some users use TikTok to promote false conspiracies, such as the delusion that the outbreak was ushered in to disrupt the 2022 midterm elections. TikTok’s Community Guidelines prohibit harmful misinformation, which it defines as content that is inaccurate or incorrect and which “undermining public trust in societal institutions and processes, such as governments, elections and scientific bodies.”
Still a simple search at the end of July and then led again on Monday londonbusinessblog.com to see various videos and comments making false election claims. Others have argued that there are false links between COVID-19 vaccines and monkey pox. TikTok deleted the videos that londonbusinessblog.com specifically referenced in his request for comment on this story, but others are still available.
“We remove content that violates our policies. TikTok does not allow content that violates our Community Guidelines on Medical Misinformationand we work with fact-checking partners to help assess accuracy,” a TikTok spokesperson said in response.
There is also concern about the rise of the medical influencer who creates content (often false and terrifying) in an effort to build a following. BuzzFeed News reported last week that some health experts are using the outbreak and the public’s growing fear to build their Twitter following.
Of course, there is a big difference between people who share their opinions to instill fear in followers and those who use their platform to share facts and preventive measures.
“The number of us that are a little bit connected in talking about” [monkeypox] trying to really educate about what’s going on, trying not to scare people and also remind people that we’re still in a pandemic,” Wallace says.
As of the day we spoke, the US had reported a total of about 3,500 cases of monkeypox since the outbreak in May. The day before, the country had registered more than 220,000 new COVID-19 cases, according to data from the New York Times.
For Wallace, the challenge is getting users to visualize the magnitude of COVID-19 compared to monkey pox. “When you hear about a new emerging disease, you just get scared and think you’re going to get it,” she says. “I’m not saying I shouldn’t soften it and not worry about it, but there’s just a lot more risk of getting COVID in all these situations where people run past me than monkey pox.”