In June, the UK Office of National Statistics reported that 2 million people in the UK are experiencing self-reported Long Covid. Most of those people are aged 35-49. Two-thirds of these people say that their symptoms adversely affect their day-to-day activities, with one in five reporting that their abilities have been “limited a lot.” With an average GP consultation taking 9.2minutes, describing 30+ symptoms can be a challenge. TIYGA Health has been researching symptom progression in a group of Long Covid patient patients in Northern Ireland for over a year and is now presenting the results in conferences and case studies.
For people who develop Long Covid, their old life can feel a million miles away. For some, that is more than 2 years ago. Long Covid does not discriminate. Young, healthy people with no underlying health conditions are susceptible to this complex and misunderstood illness. Footballing superstar Lionel Messi has been suffering from long covid, it can affect anyone.
At TIYGA Health, we know people from all walks of life who – before Long Covid – considered themselves healthy, hardworking, and highly motivated. Now, these people cannot go to work, participate in their usual hobbies, or spend time with their families.
A Community Care Worker with Long Covid told us about changes in their digestive system and sleep patterns: “I can’t eat first thing in the morning as it puts my stomach off all day [but] I crave all sorts of food. I’ve never really liked spicy food but now I do. It’s a huge difference going from three meals a day to sometimes just one main meal and lots of rubbish snacks. The amount of time I sleep or nap during the day has changed, and my sleep quality has worsened, with more disturbed sleep, more time awake, restlessness and dreams. I change plans as sometimes I can’t concentrate on a conversation.”
We still know so little about Long Covid. It could be that the original infection alters our immune system in some way. Research is ongoing. But without knowing for sure, doctors cannot offer reliable treatment. And there are no diagnostic tests.
Long Covid is having a significant impact on the UK workforce and, as the UK response transitions from pandemic to endemic, then learning to live with Covid means living with Long Covid too. Consequently, an All-Party Parliamentary Group (APPG) recommends that the UK Government commits £100m per annum to funding research into diagnostic and treatment pathways for Long Covid patients.
Symptoms of Long Covid are wide-ranging and fluctuating. Patients commonly report more than 20 different symptoms, including chronic fatigue, breathlessness, muscle aches and pains, ‘brain fog,’ anxiety and stress.
In summer 2021, a nurse who had contracted Covid-19 in Spring 2020 said: “Every day I feel drunk, unable to sit up for long periods, unable to stand without support for longer than 10 minutes, unable to tolerate noisy or long interactions or read more than two pages of a book. Long COVID is a multisystem illness and must be treated as such; I no longer recognise the woman I was.” By Spring 2022, she had traveled to South Africa for treatment, and she now says, “If I had been given the triple anticoagulant therapy and antivirals within the first 6 months my prognosis would have been better.” Sadly, at that time nobody knew how to treat covid let alone long covid.
Post-exertional malaise (PEM) is common with Long Covid. It often gets worse after physical or mental exertion, but people can manage it by pacing their activities. For people experiencing PEM because of Long Covid, there is great value in working out their individual activity limits so that they don’t push themselves too far. Rushing to return to normal activity, or even attempting too much rehabilitation too soon can set people back in their recovery.
For this reason, doctors often recommend keeping activity and symptom diaries to manage their ‘energy envelope.’ TIYGA’s app-based symptom tracker makes it easy for people to track how they feel day to day and share their data without worrying about pain, fatigue and recall error.
Our users put the app’s success and usefulness down to a variety of factors:
TIYGA’s app plays the role of a technological confidante – one that doesn’t make assumptions or pass judgement. A problem shared is a problem halved. Plus, it gives family members and doctors a better picture of what was tried and what has or hasn’t helped.
Our case study participants have given permission for TIYGA to analyse their anonymised data to access rich insights into Long Covid. We’ll be sharing some of their stories soon. Over time, we hope this will help inform the development of safe and effective treatments.
TIYGA has recently won a special Patient Champion prize based on the potential of using such data to empower the patient-doctor relationship.
Learning from real world patient experience of symptoms became an essential part of decision-making during the pandemic. Around 5m people in the UK reporting covid symptoms daily via apps and the benefits go way beyond covid itself. If you would like to offer digital symptom tracking to your patients, talk to TIYGA now.
TIYGA™ Health empowers people to discover patterns that matter and to understand the factors that influence their health and wellbeing so that they can make better choices for the longer term. Time is your greatest asset is a concept that applies across all of healthcare from wellbeing and prevention through diagnosis and treatment through to end of life. Timely and personally meaningful intervention play a vital role in achieving the best outcomes for the right person, in the right place at the right time to get the right care. Smart patient diaries support good self-management and empower the patient-professional relationship.