Life after Covid may sometimes not be the same as before. While it is an incredible achievement for survivors who manage to fight the life-threatening virus, it cannot be ruled out that it may not leave long-lasting effects on your body. Fatigue, hair-fall, forgetfulness, temporary memory loss, mild fever, brain fog are some of the persisting symptoms that survivors have complained about post-Covid. It is imperative to report to a doctor if you have any of these issues. You may after all have Long Covid. Asian Voice spoke to Long Covid survivor Sanjiv Patel, and experts to know more about Long Covid management.
“The last time I saw my father was when the ambulance took him to the hospital, and although it is sad, I feel at peace,” said Warwick University lecturer Sanjiv Patel (54). He and his entire family (wife, parents and two children) contracted the Coronavirus before the UK went into its first lockdown in March 2020.
After a few days of home isolation, Sanjiv and his father were hospitalised. Unfortunately, Sanjiv lost his dad to Covid. The limit was 10 people at a funeral at the time. Swamijis at the Neasden Temple in London, were able to remotely guide him through the funeral over a zoom call, allowing many people to join remotely.
Sanjiv’s quest with Covid didn’t end there. He now suffers from Long Covid.
In a heartfelt discussion with Asian Voice, Patel opened up about his journey through Covid-19. While he agreed that most people are living under the stigma of Long Covid symptoms and hiding it, it is a welcome change to see a male member of the community like Sanjiv come forward and share his story with our readers.
Sanjiv has been a part of two Convalescent Plasma trials which were eventually discounted. The research project is called Phosp-Covid. The process includes rigorous testing of blood, psychometrics, DEXA scan amongst the tests. “I am also asked to wear a Heart Rate monitor for 14 days which I post in,” Mr Patel told the newsweekly.
He has also been a part of Respiratory Research - Full Lung Function Test including Spirometry, and transfer factor to assess not just lung capacity but also the efficiency with which oxygen transfers to the body from the lungs. Sanjiv Patel also helped NHS Blood and Transplant to get the message out about the need to get vaccinated and to dispel the myths.
Commenting on how the UK government handled Covid, Mr Patel said, “The scale and speed of it clearly took most governments by surprise and the UK was no different. Unfolding was a deadly virus that nobody really understood. No clear idea of what safety measures should be taken and how to keep the economy alive at the same time.
“Despite being really ill, I remember being brought to tears when I heard Rishi Sunak announce the Government was going to bring in financial support for businesses through the 'furlough' scheme as I realised this was not a short-term problem.
“I think that they have done the best they could and learned along the way so I don't think it's healthy to look for blame at times like this.”
Self-reported Long Covid symptoms were adversely affecting the day-to-day activities of 674,000 people in private households in the UK, with 196,000 of these individuals reporting that their ability to undertake their day-to-day activities had been limited a lot.
Long Covid in children
An estimated 674,000 people reported that their symptoms have negatively impacted their ability to undertake their day-to-day activities. People who tested positive for Covid-19 are around eight times more likely to suffer prolonged symptoms than observed in the general population.” Long Covid is, however, not just confined to adults. ONS figures suggest that 8 out of 100 infected are 12-16yo who are still symptomatic after three months from infection. This also includes 7 out of 100 infected 2-11yo.
NHS is setting up specialist Long Covid services
The NHS is setting up specialist Long Covid services for children and young people as part of a £100 million expansion of care for those suffering from the condition. The 15 new paediatric hubs will draw together experts on common symptoms such as respiratory problems and fatigue who can directly treat youngsters, advise family doctors or others caring for them or refer them to other specialist services and clinics.
Some £30 million will also go to GPs to improve diagnosis and care for those with Long Covid while the new investment will also boost online services. The boost to dedicated services for young people is part of a package of investment in a range of measures to help young people and adults with Long Covid, including a major focus on specialist treatment and rehab services. Some estimates suggest that 340,000 people may need support for the condition including 68,000 who will need rehab or other specialist treatment.
Expressing his gratitude towards NHS, Sanjiv said, “While I was in the hospital, I was blown away by the care and compassion of the nurses and front-line staff, it is something I will never forget. They were putting their lives at risk to help us, and they always did it with a smile on their faces. There was no known treatment apart from Oxygen, but their genuine care was invaluable.
Long Covid survivors are not on the government's priority or plan for travellers coming to the UK. Reacting to this, Sanjiv told the newsweekly, “Any government's first priority has to be ensuring the safety of its people and so quarantine is a necessary measure in the current scenario. We all need to learn to be more understanding, mindful and compassionate for those who may be suffering from Long Covid. The simplest of things can be exhausting.”
So far, Sanjiv has not resorted to therapy for managing any kind of stress, but he has found solace in coping with Long Covid by participating in research, making awareness videos on his YouTube Channel ‘Sanjiv Speaks’ and by helping more people around him just by initiating dialogue about Long Covid to do away with the stigma associated with accepting that one could have this condition.
Over two million people in England have Long Covid?
It is imperative to note, that over two million people in England are thought to have had one or more Covid-19 symptoms lasting at least 12 weeks according to one of the largest studies of the virus funded by the government. The findings suggest the prevalence of persistent symptoms, or Long Covid, increases with age, with a 3.5% increase in likelihood in each decade of life. It shows Long Covid is higher among women, people who are overweight or obese, who smoke, live in deprived areas or had been admitted to hospital.
According to a report published in The Guardian, “Because women react so strongly to the presence of a virus, viral reservoirs are more likely to trigger waves of chronic inflammation throughout the body, leading to the symptoms of pain, fatigue and brain fog experienced by many with long Covid.”
The same report also suggested that worryingly, signs of age-old biases have crept in over the past year with Long Covid. There are anecdotal reports of female patients complaining that their persistent symptoms have been dismissed or attributed to anxiety.
No international agreement about the diagnostic criteria for Long Covid
Professor Mahendra Patel, PhD FHEA FIPA (India) FRPharmS, Co-Investigator and Ethnic Minority Communities and Pharmacy Research Lead PRINCIPLE Trial University of Oxford has accepted that there is no treatment for Covid. “At Oxford, we've already found that inhaler reduces the recovery time for people to get better earlier, by a median of three days,” Prof Patel told the newsweekly. You can check your eligibility criteria and seek treatment for free and be monitored for over 28 days under the Oxford programme. Contact 0800 138 0880 or www.principletrial.org.
Prof Patel mentioned that one needs to be careful about the absence of international agreement about the diagnostic criteria for Long Covid. It is not just a fever or loss of sense of taste, but one must also notice psychological changes and record or and monitor each symptom post-Covid.
Long Covid continues
Meanwhile, a study has revealed that nearly 5% of Covid-19 patients who lost their smell have still not got it back one year after having the virus. Tensions have now resurfaced with the advent of the pandemic and “long” covid or post-covid symptoms. As many as 376 ,000 people in the UK report symptoms more than 12 months after the first onset of covid-19, often experiencing extreme fatigue along with a wide range of other symptoms.
Clinicians report a complex picture. Patients with Long Covid are a diverse group, and it’s hard to know what treatment path to put them on. Finding the right balance between gentle activity to avoid deconditioning and not triggering post-exercise malaise is important in each patient. But the advice given, the research conducted, and how it is communicated have become highly sensitive issues.
Long Covid is an emerging phenomenon that is not yet fully understood.
Asian Voice got in touch with Asthma UK- British Lung Foundation to ask some specific questions to a team of experts related to Long Covid. Below are some excerpts from the Q&A.
Q - What is the immediate impact of Long Covid on our respiratory system?
Long Covid is used to describe signs and symptoms that last for longer than 4 weeks after getting Covid-19. Long Covid can affect your whole body and you may experience lots of different symptoms, either at once or at different times.
Symptoms can include:
- breathlessness
- extreme tiredness (fatigue)
- problems with memory and concentration (known as ‘brain fog’)
- a cough that’s been ongoing since you’ve had Covid-19.
Other common Long Covid symptoms can include:
- difficulty sleeping (insomnia)
- dizziness
- pins and needles
- joint pain
- chest pain or tightness; heart palpitations (these may need urgently investigating, so it’s important to seek medical help as soon as possible)
- depression and anxiety
- tinnitus, earaches
- feeling sick, diarrhoea, stomach aches, loss of appetite
- a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
- rashes
If anyone is experiencing Long Covid symptoms, the first thing they should do is speak to their GP. They will first try to find out if there are any other possible causes of these symptoms. Many from the BAME community will have experienced Long Covid.
Q - Even while we're vaccinated, what kind of precautions do Long Covid survivors in specific need to take in order to fully recover? What are the possible symptoms that they must look out for?
How long your recovery takes depends on many factors – it could take weeks or months. Long Covid isn’t the same for everyone, so you may need different care and support from other people who have had it. You can find more advice on how to deal with breathlessness if you have Long Covid on the BLF website, which includes videos with techniques you can practice. Tiredness (fatigue) is common after having Covid-19. Some people might feel a little bit tired, while others might feel very tired, to the point of exhaustion. You might find that your tiredness comes and goes. There are plenty of things you can do to help your fatigue, including getting yourself into a routine and slowly getting more active.
Q - What is your assessment of the NHS when it comes to being equipped to handle Long Covid cases?
Thirty million pounds has been earmarked by the NHS to go to GP surgeries to improve diagnosis. Around £70 million is being invested in an expansion of the network of specialist Long Covid clinics. But while the plan is to be welcomed, it will only make a difference if it is turned into meaningful action now. Patients have waited long enough for treatment. We’re concerned that the condition will need more funding as the numbers affected by it grow.
And crucially, research activity into the disease must be ramped up to improve treatments and ultimately lead to the development of a cure.
