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Long COVID, also called Long-Haul COVID or Chronic COVID Syndrome (CCS), is a term used for those people who have recovered from COVID-19 but now find their bodies considerably altered. They may experience the same or a completely new set of symptoms from COVID-19 which can be persistent or show up anytime.
Long COVID is usually observed in patients after 2 - 3 weeks of their recovery. Here’s a full list of its symptoms as released by the Centers for Disease Control and Prevention (CDC). However, this list is expected to grow further as the virus, itself, is new and the study of its long-term effects, newer still.
Most of the long-haulers experience fatigue, headache, shortness of breath, loss of smell, muscle weakness, low fever, brain fog, chills, hot flashes, skin irritation, hair loss, etc., which interferes with their day-to-day functioning. Simple household chores like making some coffee equal to running a 100m race. The touch of a blusher sends shivers down the spine. Serious medical conditions requiring emergency care have also been reported. These patients include young adults and children, many of whom have been asymptomatic.
Lack of data
Since the month of May, patients started reporting their symptoms to doctors and even journalists. But nobody believed them. They were being gaslighted, misdiagnosed and sent away with antidepressants. They were being deprived of proper medical care and the subsequent sick leaves at work. This affected their social and financial support needs, too.
Social media was the only place where they could record their frustration. And though everything spoken here should be taken with a grain of salt, it didn’t stop researchers like Juan Banda from mining about 4.5mn tweets everyday to learn about these long-haulers on whom there was no clinical data available. Many such patients formed support groups on FaceBook, Instagram, Slack, etc., to share their health issues and also draw the attention of healthcare workers.
One such group (Body Politic Slack support group) is now a full-blown research centre called the Patient-Led Research Group whose team comprises scientists, researchers (some are long-haulers themselves) and survey designers who collect data in Google forms and accept inputs in nine languages.
On the other end, a few global medical journals, independent organizations and groups of physicians across the globe have also attempted to organize themselves and study this phenomenon.
On a national level, Frances’ health body- Haute Autorité de santé (HAS), has this week commenced its study on how to help long-term affected COVID-19 patients, whereas, Americas’ National Institutes of Health (NIH) this month held a two-day seminar on long-COVID and its symptoms. In the UK, National Institute for Health and Care Excellence (NICE), Scottish Intercollegiate Guidelines Network (SIGN) and Royal College of General Practitioners (RCGP) together studied and issued guidelines for long-COVID in December. However, they have been criticized by The Lancet on the basis of lack of comprehensive description of the term, adoption of inappropriate terminologies, non-disclosure of the conditions that trigger long-COVID and its overdependence on psychological stress.
The World Health Organization (WHO) officially recognized long-COVID as a condition in the month of August.
What does the research say so far?
· Office for National Statistics (ONS), an independent body reporting to the UK parliament, estimates that one in five people have symptoms that persist after five weeks, and one in ten have symptoms for 12 weeks or longer. The total number of such people in England are 1,86,000.
· Medical journal- BMJ, studied 201 patients and shared that up to 66% of the respondents suffered organ damage and up to 25% suffered multiple organ damage.
· Henan Higher Education Institutions, China, studied mildly ill patients and found that 70 percent of the subjects had abnormal lung scans after three months from their initial illness.
· Medical journal- JAMA, in its research letter published that 125 out of 143, about 75% of the patients hospitalized in Italy still experience COVID-19–related symptoms after recovering. In an older study between 2000-2001, it had published a finding that 81% of ventilated patients (a treatment common in COVID-19) develop delirium.
· A group of physicians at Assistance Publique, a hospital in Paris, observed that they had received on an average 30 long haulers every week between May and July when the lockdown had ended in France. The average patient age was 40 years and women outnumbered men by 4 to 1.
· The University Hospitals of Geneva (HUG) and the General Health Directorate of Geneva in their telephone interview with 700 COVID-19 patients, found that a third of them still showed some kind of a symptom, four-to-six weeks after being diagnosed.
· The Patient-Led Research Group which has a majority of its respondents from the US, in its survey of 640 long-COVID patients recorded more than 200 symptoms, including testicular pain, urinary problems, and menstrual changes.
· Annals of Internal Medicines published a study of 16 diverse groups from around the world and found that around half of the asymptomatic patients likely suffered lung damage.
· Wiley online library published a research paper by a team of experts who studied patients in Chicago and concluded that over 40% of them had developed some kind of neurological condition and 30% had impaired cognition.
Other symptoms experienced are-
In three separate studies (conducted by American doctors and two medical journals- The Lancet and the Annals of Vascular Surgery), serious cases of blood clotting among long-COVID patients was reported. This is because of an autoimmune antibody that is found in the patients’ blood. It attacks the body cells, creating clots in arteries, veins, and microscopic vessels which can damage the tissues and reduce the blood flow and subsequently, the oxygen supply, to various parts of the body like the lungs, brain and heart. This kind of blood clotting can call for an amputation or result in a stroke.
The Annals of Vascular Surgery cited a twofold increase during the pandemic in major amputations among its patients in the Netherlands.
Erectile dysfunction in men and menstrual problems in women
Chinas’ Health Commission of Hubei Province and The Lancet have separately concluded that COVID-19 is linked to low testosterone levels in men, resulting in erectile dysfunction and infertility. This finding is consistent with a 2015 Indian study that showed around 75 per cent of the men suffering from diabetes (i.e., low on immunity) experience erectile dysfunction.
Web-based news providers like Medical News Today (MNT) and MedPage Today have chronicled statements from several women who were former COVID-19 patients and reported that most of them suffered from irregular menstrual cycles and experienced blood clots in their discharge. Low immunity means low estrogen levels in the body. This hormone regulates periods in women. However, menstrual cycles are also easily affected by stress.
Cases in children
As of December, over 1.8 million children in the US tested positive for COVID-19. A study published in JAMA Neurology observed that out of 27 children with Multisystem Inflammatory Syndrome (MIS-C), about 14.8 per cent exhibited new neurological symptoms like headaches, muscle weakness, and reduced reflexes.
Treatment for Long COVID
Though its been just a few months since the authorities recognized this problem and issued their guidelines for long-COVID, the pharmaceutical companies have been agile. Some of them like CytoDyn Inc., Organicell and PureTech Health are currently conducting phase III trials among the patients.
This month the University of California’s (UC) Davis Health Center also opened a clinic to help long-haulers.