Clinicians are often at a loss as to how best help their patients when faced with long or non-recovery after other viral illnesses and in the absence of effective treatment or cure for these debilitating conditions, patient self-management is therefore of the utmost importance. This can be incredibly frustrating for both.
The TIYGA App can help identify when activity patterns are unhelpful from the data collected on downloaded charts and in turn enable healthcare providers and service users to work together for the best possible outcomes of their chronic illness experience.
ECHAlliance members TIYGA and the charity HOPE 4 ME & Fibro Northern Ireland are together helping patients towards having a better quality of life by offering them the opportunity to track subjective symptoms in a tailored, user-friendly app.
The charity’s founder, Joan McParland, is only too aware of how vital it is for others like her to find ways of managing and understanding their symptoms. She developed sudden viral onset myalgic encephalomyelitis (ME) back in 1999. A lack of information about her illness led to Joan rapidly developing a more severe and irreversible form of the condition.
“Even after my diagnosis, I wasn’t made aware of the defining feature of the disease, post-exertional malaise (PEM), or how to properly self-manage,” says Joan. “I tried to push through the crippling fatigue and host of other debilitating symptoms, with devastating consequences.”
Over the years, Joan learned the importance of pacing her activities and developed ways of living within her severely reduced “energy envelope.”
Her experiences – marked by a general lack of support or knowledge from the medical profession – are common experiences for those with ME/CFS and fibromyalgia. Amidst the pandemic, people who have developed Long Covid – many of whom meet the diagnostic criteria for ME – are also facing a similar fate. In interactions with doctors and nurses, people with these conditions are required to recount their experiences of subjective symptoms. This can be especially difficult amidst severe physical and mental fatigue, brain fog and memory difficulties.
There was a huge gap in the market for something that could enable these patients to better manage and understand their condition.
Members of the charity started trialling the beta version of the app in December 2020. “We designed the app to be quick and easy to use. By connecting with a patient-led charity, we’ve been able to co-develop an innovative, relevant, and intuitive app for patients that’s delivered in terms they already use and understand,” says TIYGA founder Katrina Delargy.
The bespoke fibromyalgia and ME profiles for the TIYGA app help members of the charity and other patients monitor their activities. They can log fatigue levels, memory and attention issues, digestive system problems, muscle and joint pain or stiffness, and secondary mood issues, anxiety, or depression. Users can track their patterns of sleep, rest, work or study, socialising or leisure, and their daily personal routine.
One charity member said:
“The TIYGA app helped me to make sense of an often contradictory and bewildering illness to take more control of my health.” Another explains how easy the app is to use: “Slider bars record severity of symptoms, which is great for people with fibromyalgia.”
Those using the ME and fibromyalgia profiles on the app are finding the visualisation of their symptoms incredibly useful: “With brain fog, and short-term memory problems, it can be very difficult to remember how my health has been over a period of time. Seeing my personalised charts enables me to make better choices, it helps me identify my triggers and relievers, and it keeps me more accountable with regards to pacing my activities.”
“It was amazing when I realised we could work with TIYGA to develop profiles for an app specifically for people with ME,” says Linda Campbell, Advanced Nurse Practitioner, Chair and Healthcare Professional Education Advisor for the charity. She says that TIYGA offers people “greater ownership of their condition, and it gives them hope, helping them get through their everyday lives.”
“Unlike the TIYGA app, my attempts at keeping activity records were basic and unsuitable for sharing with a health professional,” says Joan. “I’m delighted that other patients experiencing post exertional malaise, the defining feature of ME, can use our profile on the TIYGA App to visualise how overactivity directly effects their quality of life and most importantly, how proper self-management can potentially avoid further decline.”
TIYGA hopes to work with new partners to define new profiles and uses for the app, who can act as trusted intermediaries for the end users. Profiles can be adapted to track different parameters – such as pain, dizziness, and sleep quality – depending on what is most relevant to the condition.
The company is now looking for new sponsors to work with in developing new profiles for the app, especially for illnesses that require the tracking of personal experiences and subjective symptoms – such as pain and fatigue – over weeks or months. Profiles currently available to sponsor include long-haul after virus (long-COVID), symptom flare post exertion, upper body pain, and post-stroke recovery.
Contact TIYGA™ today to find out more.
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TIYGA 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 in the longer term.
