Victoria resident Coreen Mason never thought COVID-19 would hit as hard as it did when she first caught the virus in September, let alone that she would be suffering devastating impacts months later.

含羞草研究社淐OVID-19 was always something that I took seriously but especially after having a few boosters 含羞草研究社�. I was convinced by the time I含羞草研究社檇 taken a few days off work, that I would be OK,含羞草研究社� the 41-year-old said.

But a week after 含羞草研究社渉orrendous lethargy,含羞草研究社� some fever and a tiny bit of a dry cough, she woke up and 含羞草研究社渋ntense vomiting started.含羞草研究社� After going through two IV fluid bags in 10 hours at the emergency, she was sent home.

Now, four months later, Mason is still severely impacted: suffering from constant exhaustion, brain fog and shortness of breath, among other symptoms. She is unable to do things that used to help her mental health, such as biking to work, joining her running group or going for long walks.

Add Mason to a list of Victoria residents suffering from long COVID or Post-COVID Conditions, broadly defined by the Centres for Disease Control and Prevention as signs, symptoms and conditions that develop or continue for at least four weeks after a COVID-19 infection.

Different organizations have different timelines. The World Health Organization defines it as three months after the original bout of illness or positive test result.

Long COVID is diverse and can include a host of strange symptoms including fatigue that interferes with daily life, blurred vision, persistent racing heart, flu-like symptoms, loss of smell and taste, brain fog and nerve pain. It can also include new-onset conditions such as diabetes, chronic fatigue syndrome (CFS) and more. These are just a few of the hundreds of symptoms recorded by patients. Based on a 含羞草研究社渃onservative含羞草研究社� estimate, a found at least 65 million people around the world have long COVID.

While the cause is still not understood, pieces are slowly being put together.

It含羞草研究社檚 not deconditioning: suffering from extreme fatigue

For Mason, the biggest struggle is with fatigue. A five-kilometre walk now feels more like a 10-km run.

She is frequently short of breath. If she increases her activity, she then endures severe fatigue and neurological symptoms like brain fog for several days. This is a phenomenon called Post Exertional Malaise (PEM), which the CDC describes as an onslaught of symptoms that can follow even minor activities. Symptoms typically worsen 12 to 48 hours after activity and last for days or even weeks.

This phenomenon is not actually new and is a hallmark of chronic fatigue syndrome (ME/CFS), a central nervous system disorder that commonly occurs in people following a viral infection.

Some studies estimate the number of people with long COVID that have chronic fatigue syndrome is .

含羞草研究社淚 start feeling like I含羞草研究社檓 getting better and then I含羞草研究社檒l end up doing a little bit too much and I含羞草研究社檒l feel exhausted again,含羞草研究社� Mason said.

New research is linking the fatigue to 含羞草研究社渃lear changes含羞草研究社� in the muscles of those with long COVID, according to a in Nature Communications.

The study compared 25 patients who had long COVID to 21 healthy people who had fully recovered. The long COVID group had symptoms for at least six months and were all diagnosed with PEM.

Both groups worked out for 10 to 15 minutes on a stationary bike until they reached their maximum aerobic capacity. Thigh muscle biopsies were taken a week before they exercised, and a day after.

The findings were striking: Patients with long COVID displayed clear indications that the mitochondria, or energy factories of the muscle, functioned less well and produced less energy. The study noted 含羞草研究社渟evere muscle tissue damage含羞草研究社� with immense amounts of cell death.

It also found T-cells had infiltrated the muscles of long COVID patients. T-cells are a type of white blood cell that helps the immune system fight germs and protects the body from disease; they are very rarely found in healthy muscles. The tissue analysis possibly indicates 含羞草研究社渁n autoimmune response within the muscle cells,含羞草研究社� Akiko Iwasaki, a professor of immunobiology at Yale University, told NPR.

Rob W眉st, a study co-author, clarified on X (Twitter) that the findings were not a result of being out of shape after a period of resting from the virus.

含羞草研究社淭he cause of the fatigue is really biological,含羞草研究社� W眉st said in an Amsterdam University Medical Centers (UMC) news release. 含羞草研究社淭he brain needs energy to think. Muscles need energy to move. This discovery means we can now start to research an appropriate treatment for those with long COVID.含羞草研究社�

The study has brought up strong emotions for many suffering, including relief.

含羞草研究社淚 cried when I read the article,含羞草研究社� said Adriana Patino, director of Long COVID Canada.

Patino, who lives in Vancouver, was a competitive swimmer before she got COVID. She said she lost several relationships with friends and family members after months of fatigue, her heart rate randomly spiking and neurological issues.

含羞草研究社淭hey didn含羞草研究社檛 believe me. They stopped talking to me, thinking I was victimizing myself, being weak, needing attention.含羞草研究社�

It含羞草研究社檚 been a struggle for Patino, 39, to even do light workouts.

含羞草研究社淎s an athlete, I was always used to pushing through, keeping active. That landed me in the ER and I almost died.含羞草研究社�

Living life as a 含羞草研究社榗onstrained self含羞草研究社�

Before she got COVID, Victoria resident Jinelle Woodley, 56, was a full-time PhD student on leave as a nurse practitioner. She also ran a household, had three volunteer jobs and was physically active with marathon training five days a week, CrossFit three-to-four days a week and yoga three days a week. She was in Boston to run the Boston Marathon when she got COVID and her health completely deteriorated.

Woodley fell into the group of approximately one-third of people with long COVID who have no identified pre-existing conditions (an estimate published in Nature Reviews Microbiology).

含羞草研究社淟ong COVID rendered me largely bed-bound for the first four months,含羞草研究社� she said.

Woodley said it was far beyond being unable to do any cognitive or physical work,. The 含羞草研究社渕ildest of daily functions含羞草研究社� that she had never before considered exertions now become intolerable.

含羞草研究社淭hings such as hearing a sound, looking at a screen, talking, moving from one room to the next, raising my arms, answering a question. On good days, I could muster some of these tasks, but over the next 48 hours my symptoms would worsen and remain flared for weeks.含羞草研究社�

Woodley said she has 含羞草研究社渋mproved over time含羞草研究社� with patience.

含羞草研究社淚 am now functionally independent, but am far from being able to work full-time or exercise.含羞草研究社�

To avoid crashing, or Post Exertional Malaise, B.C.含羞草研究社檚 Post-COVID-19 Interdisciplinary Clinical Care Network recommends pacing, a method of finding one含羞草研究社檚 energy limit and working within it.

含羞草研究社淥verexertion can lead to an unhelpful pattern where you 含羞草研究社榞o until you can含羞草研究社檛 go any more含羞草研究社� and then 含羞草研究社榗rash含羞草研究社� with worsened symptoms,含羞草研究社� the clinic says in one of its worksheets.

Woodley describes this as living life as a 含羞草研究社渃onstrained self.含羞草研究社�

Unfortunately the energy limit for many is extremely low and may be difficult to abide by given the demands of everyday life. Even after years, some patients, including some on disability, aren含羞草研究社檛 finding themselves back to normal.

It can affect anyone

According to the WHO, long COVID can affect anyone exposed to COVID-19, regardless of age or severity of original symptoms. Research is painting a clearer picture of who is most at risk.

A large analysis study published in JAMA Internal Medicine, which looked at 41 studies, found patients over 40, those with previous health issues, and those who had a severe COVID-19 infection had a greater risk. It also affirmed that vaccination lowers the risk.

Celebrities who have struggled with long COVID include Billie Eilish, Colin Farrel, Salma Hayek, Gwenyth Paltrow, Bethenny Frankel and Dave Navarro. NHL含羞草研究社檚 Brandon Sutter retired from the NHL in 2023 after two years of long COVID derailed his career.

Some studies estimate it含羞草研究社檚 likely about 10 to 30 per cent of people infected with COVID-19 will go on to develop long-term symptoms, though it is still unclear why. There are 含羞草研究社渓ikely multiple, potentially overlapping, causes,含羞草研究社� said a .

In B.C., the Post-COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN) has worked with 4,342 patients since its inception in May 2020.  

Invisible illness

Many people living with long COVID report feeling isolated and without the support they need, due to it being an invisible illness not many people understand.

Riel Hahn, a former actress and artist who splits her time between Victoria and Vancouver, got COVID 15 months ago. She含羞草研究社檚 now on disability.

Hahn said she is extremely lucky to have a 含羞草研究社渞eally beautiful core group of friends,含羞草研究社� who have stuck with her.

含羞草研究社淚含羞草研究社檓 so grateful because I know there are lots of people whose doctors will still not acknowledge that something real is going on with them, and even if they do acknowledge, they don含羞草研究社檛 have the knowledge about it,含羞草研究社� she said, speaking through tears.

Where she does struggle is managing living alone, and feeling misunderstood. A friend who saw her at an event said she seemed well and must be getting better.

含羞草研究社淚t made me feel like he doubted me. Like yeah, I stayed in bed for four days so I could go out for an hour.

含羞草研究社淚 don含羞草研究社檛 know why I look so good, my skin is glowing and I have good style right now,含羞草研究社� she said with a laugh. 含羞草研究社淏ut I think I含羞草研究社檓 making an effort to do that because my insides feel like garbage. It doesn含羞草研究社檛 make me feel good to have messy hair and be in sweats all the time.含羞草研究社�

Still, many of her symptoms go unseen to others. Hahn could be out for a walk with someone, and she含羞草研究社檒l have to ask them to slow the pace.

含羞草研究社淏ut what I含羞草研究社檓 not saying to them is all my joints are on fire while we含羞草研究社檙e walking and my right leg just stops working sometimes 含羞草研究社� and the insides of my muscles get this vibration, especially in my legs where they just start to internally shake, and I can just tell I含羞草研究社檓 so weak.含羞草研究社�

Sometimes it feels like she can含羞草研究社檛 hold up the weight of her own head, with soreness above her ears and temples.

含羞草研究社淚t含羞草研究社檚 like my eyeballs start to shake and I can含羞草研究社檛 process visual information or sounds properly. I have to immediately get my head supported and if I don含羞草研究社檛 it含羞草研究社檒l turn into a migraine very quickly and I含羞草研究社檒l start to get very nauseous and very dizzy.

含羞草研究社淧eople can含羞草研究社檛 see that those things are happening.含羞草研究社�

Managing symptoms and uncertainty

For many who are diagnosed with long COVID, it含羞草研究社檚 a long game coloured by an endless navigation of doctor visits, disability forms, and redefining what their daily life and relationships can look like.

B.C.含羞草研究社檚 post-COVID care network said that the duration of symptoms varies, but approximately 35 to 40 per cent of patients show improvement after six to nine months.

B.C.含羞草研究社檚 post-COVID-19 Interdisciplinary Clinical Care Network said that 582 out of 3,526 respondents to a survey noted they were not able to work at all following their COVID-19 illness.

Those with the condition in B.C. continue to access resources like group education sessions, educational videos or written resource sheets through the care network. Patients can also be referred to an interdisciplinary team of allied health professionals, including physicians, physiotherapists, occupational therapists, nurses and social workers. Those in the clinic are treated with a focus on self-management of symptoms.

In many ways, B.C.含羞草研究社檚 PC-ICCN is a leader in long COVID care in Canada. The clinic said it is the first network of its kind in Canada to standardize post COVID-19 care across health authorities, add real-time research into clinical care, and provide online tools, including the MyGuide Long COVID tool.

The network has permanent funding from the B.C. Ministry of Health and promises to 含羞草研究社渃ontinue to evolve含羞草研究社� services in response to demand, patient needs and feedback.

It is also conducting a number of studies to understand the impact of long COVID on the employment and functioning of adults aged 18 to 64, including the long-term prognosis, the economic impacts, and the return-to-work experience.

Just like Woodley and Patino, Hahn said that over time she has learned to find where her energy-limit edges are and is managing her disability to the best of her ability. Symptom management for her includes seeing a counsellor regularly, watching her diet, taking a neuroplasticity course and lots of meditation.

含羞草研究社淪o much of it for me has to do with adapting and emotional resilience and acceptance,含羞草研究社� she said. 含羞草研究社淎nd really, really soaking up the smallest glimmers of joy. Every small pleasure, every sunny moment, every bird, every minute I get to put my feet in the ocean.含羞草研究社�

But for Hahn and many others managing this illness, they are uncertain what might come or if a treatment will ever become a reality.

含羞草研究社淚 just had the most big, colourful, beautiful, exciting, wonderful life and it含羞草研究社檚 a lot of grief for that and not understanding what future I can look at,含羞草研究社� Hahn said.