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Making Visible The Invisible: Supporting Long COVID Patients And The People Caring For Them

We are living through a mass-disabling event: Over 200 million people worldwide have long COVID. In Canada, one in nine people have experienced long COVID symptoms, and this is likely an underestimate.

Occurring weeks to months after a COVID-19 infection, this multi-system chronic illness has led to what some have called "the shadow pandemic." Although millions are navigating this new illness, four years into the pandemic both patients and their caregivers continue to face challenges accessing the information and care they need.

Most Canadians have had COVID, and at least one in five have been infected more than once. These trends are troubling because evidence suggests that the risk of acquiring long COVID increases with reinfection.

Long COVID

Long COVID is a complex illness that can present with a range of neurological and cardiovascular symptoms, such as post-exertional malaise, heart palpitations, cognitive impairment, fatigue and around 200 other symptoms. Some people with long COVID, often referred to as "longhaulers," experience other under-researched syndromes, such as myalgic encephalomyelitis (ME) — also known as chronic fatigue syndrome.

Patient-researcher Kayli Jamieson's Apple Watch notification reflects the lived reality of the longhauler symptom experience. (Kayli Jamieson), Author provided (no reuse)

With a suite of life-altering impacts, it is unsurprising that longhaulers may also experience impacts to their mental health, financial stability and relationships with others. These experiences are further exacerbated by the fact that there remains no cure for long COVID.

Over the past year, our team at Simon Fraser University has been speaking with long COVID patients, unpaid caregivers — such as family and friends who take on caregiving roles — clinicians and long COVID researchers to better understand patient experiences. In a new report, we documented a number of challenges patients and their caregivers face as well as recommendations to reduce these barriers.

Holistic approaches to care

Because symptoms and experiences vary, there is no single approach to care that will support all longhaulers. In British Columbia, post-COVID recovery clinics have been instrumental in creating specialized regional spaces for long COVID care.

These clinics have blended physician care, allied health care — such as physiotherapy and occupational therapy — and patient support groups. The closure of in-person clinics in transition to an online care system, in combination with long wait times, has meant that some patients have difficulty accessing these clinics.

People with long COVID can experience a range of neurological and cardiovascular symptoms, such as post-exertional malaise, heart palpitations, cognitive impairment, fatigue and around 200 other symptoms. (Shutterstock)

Longhaulers have emphasized the value of specialized clinics and the need for holistic approaches that encompass allied health care to address the multifaceted impacts of long COVID on patients' lives. Caregivers in particular expressed a need for mental health supports due to additional strains on their ability to work, their relationships and other responsibilities.

Holistic approaches are being embraced by some groups such as the Clinical Post COVID Society in the United Kingdom which brings together a "diverse multidisciplinary clinical leadership team to reflect the varied expertise needed to care for patients with long COVID." This example may serve as a helpful model for mobilizing these approaches in Canada.

Information

Access to information about long COVID remains a significant challenge. While longhaulers obtain information from health-care providers (which can vary and be contradictory), many are unable to meet with a doctor.

In B.C., approximately one in five people don't have a family doctor. As a result, many are left to search for information themselves, wading through websites and articles while trying to discern what to trust. This can be especially challenging for people experiencing brain fog and fatigue, or those limited in time and resources due to caregiving, work or other demands on their time.

Patients, caregivers, clinicians and researchers suggest that the federal government create a national long COVID information platform providing details about symptoms, symptom management, a database of health-care practitioners providing long COVID care, and updates on recent research.

This could be modelled off the Post-COVID MyGuide, produced by the Post-COVID Interdisciplinary Clinical Care Network in B.C.. And while such resources are critical to supporting longhaulers, they are only useful if people access them. Therefore, more investment is needed to raise awareness of these platforms, evaluate their usefulness and explore ways to scale them for national use.

Prevention

Another key outcome for improving care is refocusing preventive efforts to reduce reinfection risk for longhaulers, and future long COVID cases. Prevention measures might include campaigns promoting wearing respirators, regular vaccinations, increasing paid sick days or improving air filtration and ventilation indoors.

Preventing long COVID also involves taking these precautions in the absence of visible illness, as some early estimates suggested that 59 per cent of transmission occurs without symptoms.

Our team put these prevention measures into practice in April when we hosted a hybrid long COVID event with Pulitzer-prize winning journalist Ed Yong and a panel of patients, caregivers, clinicians and researchers. The event included safety measures such as mandatory masking in KN95/N95 respirators, rapid testing of participants and MERV-13 air filters.

Both during and since this event we have received numerous messages from longhaulers speaking to how the event and the safety measures in place were meaningful to them and made them feel seen. In order to do this, collectively (researchers, clinicians, policymakers and the public) can take many steps to create safe spaces as a baseline to reduce transmission risks.

As we continue to grapple with the enduring legacies of the COVID-19 pandemic, we must recognize that many communities have been disproportionately affected by SARS-CoV-2. To address these differential impacts, patients and caregivers advocate for continued investments in patient-centred research and care to create initiatives that resonate and are relevant for those most affected.

To further amplify these stories and raise awareness, our team is developing a long COVID "Day in the Life" photo exhibit in partnership with the Museum of Vancouver, where long COVID patients can share their stories and photos. Activities like this are one more step to making visible the experiences of people with an invisible illness.

Jonathan Ross' Behind Scenes Struggle With Wife To Protect Daughter With Hidden Disability

Jonathan Ross and Jane Goldman's daughter Betty Kitten is confined to a wheelchair aged just 32 - and to make matters worse, she's been relentlessly trolled by those who cruelly claim she is faking her condition. Betty is living with chronic fatigue syndrome - a condition also suffered by ex-EastEnders actress Martine McCutcheon, which causes severe exhaustion and flu-like symptoms even when no tangible illness is present.

She also has fibromyalgia, a condition which she shares with American songstress Lady Gaga. It causes intense and debilitating pain, and Gaga was forced to cancel a spate of tour dates after a flare-up made it too difficult for her to perform. Finally, she has also been diagnosed with postural tachycardia syndrome, which causes abnormalities such as a suddenly rapid heartbeat.

However, as her disabilities are invisible, and the glowing girl often braves a bright smile, some are unaware of how much physical trauma she's going through on the inside. Last year, she was seen being tenderly wheeled to a restaurant by dad Jonathan, which she said was her first outing of its kind in three years.

Everyday activities can render her bedridden, so she's described having the use of a wheelchair to fall back on as confidence-boosting and "liberating". Betty, whose curls have been dyed every colour from blonde to lilac to baby blue to pistachio green, often shares her distinctive looks and fashion sense via Instagram, while she also offers support to fellow chronic illness "warriors".

She also used the platform to reveal that her health nightmare - which escalated in 2020 - had probably been triggered by a viral infection such as Covid. She explained that CFS causes "extreme fatigue, sleep problems, and cognitive problems in those who suffer from it (as well as some other possible symptoms such as headaches, heart issues, and muscle pain)."

Betty's bouts of intense illness following a Covid infection mirror the experiences of Good Morning Britain star Kate Garraway's husband Derek Draper.

Fortunately, she hasn't endured anything as extreme as Derek, who spent 13 months in hospital with multiple organ failure after contracting the virus, and sadly died of complications almost four years later.

She was relieved when she received a diagnosis in 2021 as she felt as if the pain she'd been suffering was finally being "acknowledged" and taken seriously.

However, Betty has hit back furiously at claims that she's being "dramatic" and faking illness to get likes and attention.

She also revealed that she planned to block some of those who believed that she was "all better" because she'd posted photos of herself with makeup on.

"Being able to look hot and put on makeup doesn't make my illnesses go away (unfortunately)," she wrote on Instagram in view of almost 7,000 followers.

"I know these comments are meant in good faith but they are upsetting for me and can be upsetting for other chronically ill people to see."

Her makeup looks have included illustrating her lips with a candelabra design in celebration of Hanukkah - a significant festival for those following the Jewish faith.

Today, her mum Jane Goldman - a journalist, screenwriter and producer who's been married to Jonathan Ross since the age of 18 - celebrates her 54th birthday.

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