London: According to a new study, fatigue is a symptom that mostly impacts the everyday lives of long Covid patients, and it can damage the quality of life more than some other cancers. The study was led by researchers at UCL and the University of Exeter. The research, published in BMJ Open and funded by the National Institute for Health and Care Research (NIHR), examines the impact of long Covid on the lives of over 3,750 patients who were referred to a long Covid clinic and used a digital app as part of their NHS treatment for the condition.
Patients were asked to complete questionnaires on the app about how long Covid was affecting them – considering the impact of long Covid on their day-to-day activities, levels of fatigue, depression, anxiety, breathlessness, brain fog, and their quality of life.
The researchers discovered that many long-term Covid patients were extremely unwell and had fatigue scores that were worse or comparable to persons with cancer-related anaemia or severe kidney impairment. They also had lower health-related quality of life scores than those with advanced metastatic malignancies, such as stage IV lung cancer.
Overall, the team found that the impact of long Covid on the daily activities of patients was worse than that of stroke patients and was comparable to that of patients with Parkinson’s disease.
Dr Henry Goodfellow, who co-led the study alongside the late Professor Elizabeth Murray (both UCL Institute of Epidemiology & Health), said,
Up to around 17 per cent of people who get Covid go on to develop long Covid*. However, the impact of the condition on patients’ day-to-day lives isn’t fully understood. Our results have found that long Covid can have a devastating effect on the lives of patients – with fatigue having the biggest impact on everything from social activities to work, chores and maintaining close relationships. Not only does long Covid negatively impact the lives of patients on an individual level, the researchers also believe that it could have a significant economic and social impact on the country.
In order to be referred to a long Covid clinic, a patient must have had symptoms in keeping with long Covid for at least 12 weeks after an acute infection.
Over 90 per cent of long Covid patients using the app were of working age (18-65) and 51 per cent said they had been unable to work for at least one day in the previous month, with 20 per cent unable to work at all.
Meanwhile, 71 per cent of patients were female. As working-age women make up a majority of the health and social care workforce, the impact of long Covid on their ability to function may add additional pressures to already stretched services.
Dr Goodfellow said,
We hope that a greater understanding of the symptoms and impact of long Covid in these patients will help the NHS and policymakers to target limited resources by adapting existing services and designing new ones to better meet the needs of patients with long Covid.
According to the Office for National Statistics, around 1.4 million people in the UK had symptoms of long Covid as of July 2022. Alongside fatigue, patients typically experience breathlessness, anxiety, depression and brain fog.
However, this is the first study to report on the impact of the condition on day-to-day functioning and health-related quality of life in patients who have been referred for specialist rehabilitation in long Covid clinics across England.
Dr Goodfellow said,
Our findings show that fatigue should be an important focus for clinical care and the design of rehabilitation services. Post-Covid assessment services should consider focusing on assessing and treating fatigue to maximise the recovery and return to work for sufferers of long Covid.
Co-author Professor William Henley, of the University of Exeter Medical School, said,
Long Covid is an invisible condition, and many people are left trying to manage significant changes to how they can function. Shockingly, our research has revealed that long Covid can leave people with worse fatigue and quality of life than some cancers, yet the support and understanding is not at the same level. We urgently need more research to enable the development of evidence-based services to support people trying to manage this debilitating new condition.
While most people survive and recover from COVID, for some people symptoms can persist for months or years. When symptoms last longer than 12 weeks, the condition is known as long COVID.
Long COVID encompasses up to 200 different symptoms. To determine evidence-based treatments for these symptoms, we need to understand the causes. One factor that may be associated with long COVID is that the virus hasn’t fully cleared from the body after the initial infection.
Other viruses lurk in the body Herpesviruses (such as Epstein-Barr virus, the cause of glandular fever), as well as HIV (human immunodeficiency virus) can exist in a “latency state” for life. This means the virus conceals itself within cells and remains dormant.
HIV, in particular, can remain dormant in infected cells throughout the body. Even though it’s inactive, it can still promote immune activation and inflammation.
Other viruses such as Zika, measles and Ebola have been found in tissues of infected people months or years after initial infection. This viral persistence can cause chronic illness.
Several studies have shown COVID can also reactivate the Epstein-Barr virus, which has remained in the body in a latent state. Research shows this has been linked to fatigue and problems with thinking and reasoning in people with long COVID.
How do we know COVID stays in the body? Several studies have identified the genetic sequences of SARS-CoV-2 (RNA) as well as SARS-CoV-2 proteins in tissues and stool (poo) samples months following infection.
These studies include multiple autopsy reports that found viral RNA and protein in a variety of tissues from people who died up to seven months after infection. SARS-CoV-2 RNA was detected in at least half the samples of heart, lymph glands, eye, nerve, brain and lung tissue tested.
In people who survived, viral RNA was found four months after infection within intestinal tissues obtained through colonoscopy, when a thin tube is used to take tissue from the large intestine. These patients had asymptomatic COVID and were PCR-negative from swabs of the nose and throat at four months.
A 2022 study found SARS-CoV-2 in the stool of about half of the participants in the first week after infection. At four months, there was no virus present in the respiratory tract but 12.7 per cent of stool samples were RNA positive. A further 3.8 per cent of faecal samples remained positive for RNA at seven months.
Initial studies did not always suggest a strong relationship between the long-term detection of SARS-CoV-2 and long COVID symptoms.
But more recently, the presence of SARS-CoV-2 RNA (or protein translated from RNA) in the blood and gut tissue was found to increase the likelihood of developing long COVID symptoms.
How might the delay in clearing the virus impact people with long COVID? Delayed clearance of SARS-CoV-2 particles in different parts of the body could drive illness through several potential processes:
- Inflammation. The continued immune stimulation by viral proteins causes inflammation, makes our immune system tired, and alters how our immune cells work as time goes on.
- Activation of other dormant viruses: The continued immune response to persistent SARS-CoV-2 can cause reactivation of latent viruses.
Antibodies reactive to Epstein-Barr virus are elevated in people with long COVID suggesting Epstein-Barr virus reactivation, likely through activating the immune system.
Other latent viruses, such as human endogenous retroviruses (HERVs; ancient viruses that have become a part of our DNA, like a genetic fossil) have recently been shown to become reactivated after infection. HERV proteins were detected in blood cells and tissues of COVID patients.
These proteins could potentially drive inflammatory processes in long COVID.
- Antibodies made by combating SARS-CoV-2 could become “self” reactive. These autoantibodies (antibodies produced by our immune system that mistakenly target and attack our own body’s tissues or organs) might cross-react with host receptors or proteins and drive autoimmune disease.
Importantly, recent studies have shown new onset of autoimmune diseases (such as type 1 diabetes, inflammatory bowel disease and psoriasis) are significantly associated with SARS-CoV-2 infection and a link between autoimmunity and long COVID is plausible.
This suggests COVID not only has immediate health impacts but could also potentially trigger long-term changes in the immune system.
While the studies mentioned above provide initial evidence of persistence of SARS-CoV-2 long after initial infection, more studies are needed to show a convincing link between lingering virus and long COVID. This should include examination of viral RNA and protein in both blood and tissues in people with long COVID independent of disease severity. And it must involve well-developed cohort studies that track large groups of people internationally.
Several trials are underway to assess whether treating long COVID with antivirals such as Paxlovid may reduce viral antigens and improve symptoms, although this remains experimental.
(This story has not been edited by NDTV staff and is published from a syndicated feed.)
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