The long-term effects of viral infections are a significant concern any time a viral outbreak occurs. Shingles as a long term effect of chickenpox, multiple sclerosis after an Epstein-Barr virus infection, and chikungunya arthritis are just a few examples of how a viral infection might lead to life-long patient suffering. From the advent of the COVID-19 pandemic, the medical world has waited with bated breath for signs of how this latest viral outbreak would affect its victims in the long-term and evidence of these long-term consequences are beginning to show.
Post-COVID-19 syndrome, or ‘long covid’, are symptoms or health issues that persist for more than 4 weeks after a COVID-19 infection. Common issues experienced by sufferers of long covid include, amongst others, fatigue, ‘brain fog’ and joint pain. Some sufferers experience more severe issues such as organ damage, blood clots and mental health issues.
With long covid now a central topic within the COVID-19 conversation, CREATION.co analysed more than 70,000 HCP english language social media posts globally by over 10,000 HCPs within a 3-month period from 19 February till 19 May 2022 to find out the latest trends in HCP conversation within the long covid sphere.
HCP online conversation about long covid was sustained throughout the 3 month period that was analysed. Notably, compared to the same time period in the previous year, conversation increased by a significant amount, showing the increase in focus on long covid compared to earlier on in the pandemic timeline. Whilst conversation was ongoing throughout the 3 month period, a couple of issues sparked a spike in conversation including calls for long covid research and concerns about the economy, which will be discussed below alongside other prominent issues discussed by HCPs.
HCPs call for more research into treatments using the hashtag #researchlongcovid
HCPs expressed frustration in the lack of research into treatments for long covid using #researchlongcovid in their tweets about this issue. They highlighted the nature of the disease, the suffering experienced by those affected by long covid and the abundance of pathology available.
Long Covid is not slow recovery. It is a complex neuroimmune multi-system condition. We are full of pathology and not getting better without treatment. #ResearchLongCovid
— Marie-Claire Grounds (@DrGrounds) March 9, 2022
Patient experience was the theme of the calls for research, with HCPs highlighting their own experience of the condition. One nurse, from North Wales, lamented the economic and relational toll it has taken on her life, from losing income to losing time with loved ones while another nurse, from Northern Ireland, notably referred to long covid as the ‘tidal wave of the pandemic’ and described that many are ‘drowning’ from their symptoms.
#LongCovid is the tidal wave of the pandemic…many of us are drowning, living with extremely debilitating symptoms 24/7! How much longer are we to wait in UK for diagnostic tests & tx? #researchlongcovid #treatlongcovid @RobinSwannMoH @sajidjavid @niahealth
— Rebecca Logan♿🌻💙😷#FBLC (@rebslogan) March 9, 2022
HCPs discuss comorbidities, particularly chronic fatigue syndrome
A central concern with long covid is the severity of comorbidities associated with the condition. HCPs discussed many emerging trends of comorbidities within long covid patients, with chronic fatigue syndrome arising as the most discussed comorbidity.
HCPs articulated that chronic fatigue syndrome was already a big problem in healthcare before long covid, and stressed that following the rise of its prevalence because of long covid, something must be done to combat it, including the need for HCPs to bridge the gap between research developments and clinical practice.
Also want to shout out to the #MECFS community or anyone who's has suffered post-viral illness. You have endured so much suffering. I'm sorry it has taken #longcovid to open the eyes of (some of) the scientific and medical community. Thank you for your support and help.
— Binita Kane (@BinitaKane) May 7, 2022
With more and more excellent research identifying the pathophysiological mechanisms of #MECFS and #LongCovid, the gap between scientific understanding and clinical practice has never been greater. HCPs must learn to respond more quickly to developments in medical knowledge.
— Dan Wyke 🦠➡️🧠🔥 (@Dan_Wyke) March 15, 2022
HCPs were also greatly frustrated with trivialisation of chronic fatigue syndrome, calling attention to the issue that all sufferers of chronic fatigue syndrome should be taken seriously, and not just those who are extremely active.
You shouldn't need to have been a marathon runner or elite athlete to prove that you're sick. People who live sedentary lives are no less deserving of belief and proper medical attention. #MECFS #LongCovid
— Dan Wyke 🦠➡️🧠🔥 (@Dan_Wyke) May 1, 2022
That being said, one HCP did point out that long covid has been helpful to sufferers of chronic fatigue syndrome because of the rate of research advancement brought about by long covid.
HCPs resonated with the sentiment of Alice Perlowski, a cardiologist and long covid patient, who expressed her frustration at the condescension experienced by long covid patients who are suffering an ‘ongoing disease process that continues to assault organs’. 123 other HCPs shared her post.
After two years of #LongCovid, I’ve developed Stage 3 Kidney disease- on top of my neurological issues.
This is ongoing disease process that continues to assault organs. Yet,patients are told: “Go exercise! And have a positive attitude.”
We demand and deserve: #TreatLongCovid
— Dr. Alice 💕 (@calirunnerdoc) March 26, 2022
HCPs highlight the dangers of not being vaccinated and governments allowing mass infections
Several risk factors for developing long covid were identified by HCPs, one of which was being unvaccinated. HCP social media influencer Dr Eric Ding shared a post which stated that those unvaccinated who were infected with COVID-19 were twice as likely to develop Long covid than those who were vaccinated.
Mass infection delusion.
Don’t risk it. 20-30% of unvaccinated infected get #longCOVID, and up to 10% of vaccinated breakthrough infected get #LongCOVID. Avoid infection please 🙏.
By @xkcd #CovidIsNotOver pic.twitter.com/YcSXUJVBsi
— Eric Feigl-Ding (@DrEricDing) April 22, 2022
Alongside this warning for the unvaccinated, Dr Eric Ding raised the issue of ‘mass infection delusion’, an opinion shared by several other HCPs including infectious disease doctor Dr Abraar Karan who called out allowing mass infections due to the probability that repeat infections could increase the risk of long covid.
Reality now is repeat reinfections soon after our last big wave
Do repeat infections increase risk for Long Covid, clotting, cardiovascular disease, cognitive issues, lung scarring etc?
Until we know the answers to these questions, allowing mass infections is ridiculous
— Abraar Karan (@AbraarKaran) May 16, 2022
HCPs highlight the need to keep wearing masks
While in many Western countries, wearing masks feels like a thing of the past, HCPs are vocally disagreeing with that notion and calling out governments for allowing citizens to stop ‘masking’, which is needed to aid in the prevention of contracting long covid. One tweet by surgeon Dr Dorry Segev which questioned the CDC’s mask guidance, calling it ‘premature’ and stating that it ‘ignores long covid’ was widely agreed upon by fellow HCPs:
If you're thinking the new CDC mask guidance is premature, ignores prevention, ignores long Covid, ignores the tens of millions with compromised immune systems or not eligible for vaccines, and ignores the risk of new variants… Well, sadly, you're right.
— Dorry Segev (@Dorry_Segev) February 26, 2022
Internal medicine specialist Dr Denise Dewald suggested that the right time to stop wearing masks would be when there are effective antivirals for long covid.
https://twitter.com/denise_dewald/status/1506297449194954766
HCPs discuss economic consequences and feeling let down by the government
A number of other noteworthy opinions and statements were expressed by HCPs within the online long covid conversation.
HCPs highlighted the growing economic fallbacks of long covid, with Dr Eric Ding getting a large number of retweets as he shared information from the Bank of England about the decrease in the workforce due to long covid.
Whoa—@bankofengland just warned that deep concern of surging #LongCovid is taking workers out of the workforce. The spike ⬆️ in workers age 16-64 who do not work because of long term illness during the #COVID pandemic is alarming, and fast increasing. Mass infection depravity.🧵 pic.twitter.com/IN1LrAvNQA
— Eric Feigl-Ding (@DrEricDing) May 17, 2022
HCPs also resonated with another of Dr Ding’s posts wherein he made the connection between being denied insurance coverage for long covid and the possibility of being denied employment because of long covid.
I don’t know who needs to hear this — but if your life insurance *DENIES YOU COVERAGE* because of #LongCovid, it’s only a matter of time before companies *deny you employment / don’t hire you* because of your long term #COVID19 illness. Don’t say you weren’t warned.
HT @Myrmec pic.twitter.com/CGR58k12zB
— Eric Feigl-Ding (@DrEricDing) May 17, 2022
Finally, HCPs in the UK felt let down by the government in their response to long covid. One geriatrician in Scotland bemoaned her frustration at being ‘at the mercy of politicians’ while her health continued to suffer, and an anaesthetist in England posted about the British government’s failure in protecting the health of its healthcare staff despite healthcare workers’ sacrifice when the pandemic was at its worst.
God it feels frustrating to be at the mercy of politicians. My health has been taken from me, and their actions really impact on how I get to live my life. Please please fund research, it’s the only answer. #LongCovid #MECFS #LCDebateScotParl
— Marie-Claire Grounds (@DrGrounds) May 19, 2022
When the NHS needed us, when things were most dangerous and uncertain, we showed up. The government failed in its duty to protect NHS staff. Deaths (predominantly BAME staff), PTSD, burnout, exhaustion, long covid – the impact is still being felt now, and no sign of any learning. https://t.co/Fz9hrWFb48
— Tom Dolphin🏳️🌈 🏳️⚧️ (@thomasdolphin) May 19, 2022
Long covid is serious and prevention and cure must be taken seriously
It is clear that HCPs are very vocal in speaking out for a better response towards long covid. The dangers of the condition and the potential of life-long suffering for patients have not been taken lightly by HCPs, with calls for better research for treatment and for governments to shape rules to facilitate prevention. HCPs recognise the dire consequences not just on the health of patients but also on wider issues such as the state of employment. As HCPs continue to vocalise this long term consequence of the recent pandemic, CREATION will continue to monitor their online conversations to find out what the trends are in this area.
If you are interested in finding out more about the needs of HCP communities within a specific therapy area, you can register for CREATION’s monthly eJournal, or get in touch with us directly to see how we can support your work.
Methodology notes:
- Between February 19 till May 19, 2022, CREATION Pinpoint® identified 71,558 healthcare professional (HCP) authored tweets from 10,068 individual HCPs mentioning long covid worldwide.
- Data for this research was analysed from the online Twitter conversations of HCPs mentioning english language keywords related to long covid.
