Dr. Bonnie Henry is a saint to many for the way she’s led the COVID-19 public health crisis in B.C. On a national level, she is well known as chair of the Council of Chief Medical Officers of Health, a pan-Canadian public health network.

But for long-haulers – the catch-phrase used to describe an estimated 3,000 Canadians (about 200 in B.C.) whose COVID symptoms have persisted for many months – Henry and other public health leaders are a source of some frustration. That’s because they don’t feel medical health leaders are doing enough to validate what many COVID survivors – lab-confirmed or presumptive – are enduring.

No one (except advocacy groups) appears to be tracking how many Canadians have lingering COVID illness. Survivors are naturally fearful they will have permanent disabilities.

Some of the symptoms of this enigmatic chronic illness include fevers that last for months, impaired short-term memory, brain fog, changes to blood pressure and heart rate, muscle pain, nausea, crushing fatigue, and hair loss. A letter to Henry and her colleagues across the country documents the many reasons they feel like pandemic castaways. Many are those who got sick in February and March but couldn’t access tests because of overly restrictive criteria.

In late August, Henry responded to a letter from long haul advocate Chandra Pasma after she and about 60 co-signers sent Henry and her medical colleagues across Canada an impassioned plea for help.

They want to see more research conducted into their ongoing conditions, more medical support, and recognition that even if they didn’t have a positive test (often because they couldn’t access tests through the winter and early spring) they should nevertheless qualify for a presumptive diagnosis of COVID so they can at least get appointments with medical specialists like infectious disease experts, lung and heart specialists or neurologists.

But Henry’s letter in response isn’t providing much relief to the long haulers who feel thery’re being brushed off. They don’t have confidence that Canada is conducting enough research on their conditions. Henry mentions three Ontario academic health institutions that are now collaborating on a major study focused on the long term effects of COVID-19 on the brain.

She acknowledges that “currently, the treatment of COVID-19 includes providing supportive care and treating secondary infections such as pneumonia, while for individuals with more prolonged illness, they should see their regular health providers.” (An excerpt of her letter is at the bottom of this article.)

Because of the insidious long-term effects of COVID-19, an increasing number of people have turned to social media for peer support. One of those is the Body Politic Covid Support Group. Another important resource is Survivor Corps, also a grassroots group providing education and other resources. Many of the members of such groups use only their first names because they are worried about workplace issues, disclosing personal health information in forums, and stigmas.

Jaye Lemmon, a Sunshine Coast resident who became ill in late March, said as a group, long haulers feel “denigrated, denied, and discounted.

“My hope is that the more people hear about long term recovery, the more they may take prevention more seriously and we get more help from the medical system. After all, we are the long term COVID pioneers. People will be helped through such information and research about us.”

Lemmon said she was a busy registered massage therapist before she got ill. Now she is unable to work because of symptoms like disabling fatigue and tinnitus.

“If the virus doesn’t kill you, it can keep you unwell for a long time.”

Estella K. said she’s relieved that long haulers are finally getting attention because “the general public still does not understand the seemingly random long term effects of COVID.”

Although she was not able to get tested in early March, the college instructor said her doctor has listed her as presumptive for COVID.  Yet she has not been able to get a referral to the St. Paul’s Hospital COVID recovery clinic. “Some days I am so ill I can’t leave my apartment and one night I thought I would die because I couldn’t breathe.”

Prior to the pandemic, the 48-year old was in excellent health, hiking regularly on challenging trails, running and cycling. Now she on sick leave and on some days, too ill to leave her apartment.

Another long haul patient, a Vancouver engineer, told me that his medical symptoms have baffled his family doctor with whom he has had telehealth calls with twice a week. He turned to other long haulers online.

“I surprisingly warmed up to the idea of shared compassion for the others going through this rollercoaster of a medical nightmare and found it helpful to have others to relate to, someone else to understand, to ask if you’re feeling better because this relentless condition lets up only to relapse and is a painful question that we all get from our family, friends, and colleagues, all too often.”

The individual, who finally has an appointment this week at the recently opened St. Paul’s Hospital clinic, said he presumes he got COVID on a holiday to California in early March. But many months since, he has been frustrated that public health officials seem to be mostly paying lip service to the huge numbers of COVID survivors with ongoing symptoms.

“It shouldn’t be this hard. There will be many more victims like us and it shouldn’t take such a determined and resourceful group of people many months to find help. Front line clinicians are dismissing our experiences and public health statements are contradicting our lived experiences.”

Another long-hauler – a 29-year old lawyer from North Vancouver – told me she was in excellent health prior to getting sick in late March, after a spin class. She presumed her illness was COVID even though she couldn’t get tested. She went to an emergency department on April 2 because of chest pain and breathing problems. She had a CT scan and a physician told her that she had a virus in her lungs but she was still ineligible for a COVID test. She finally got a test three weeks later; it was negative but likely because it was conducted too late.

In late June, she had a resurgence of symptoms – chest pain, shortness of breath, and a heart rhythm issue. She had another CT scan, an ultrasound, and another COVID test (again negative). She’s waiting for an appointment with a lung specialist but she’s been warned it will take nine months to get in.

“I also received a referral to the COVID rehab clinic at St. Paul’s, however, I then was told that they only accept patients who have tested positive for COVID. Vancouver General Hospital only accepts patients who were hospitalized.”

I asked St. Paul’s Hospital officials for data about patient visits, clinic access, and waiting times. This is the response I got today from communications spokeswoman Elaine Yong:

“A group of clinicians, researchers, and patients are actively engaged in enabling the development of post COVID care around the province.
The post-COVID clinic at St. Paul’s Hospital is supported by a committed group of clinicians, researchers, and patients who are actively engaged in developing the best ways to look after these patients and to understand and learn about this new disease together. They are working in collaboration with VCH and Fraser Health.
The clinic is in its very early stages so we do not have data available on numbers yet. Currently, people need a referral to the clinic through their family physician, but we are working on other ways for people to access. People who need care through the clinic are receiving it.

“Another important provincial resource available for family physicians and specialists anywhere in the province is the RACE (Rapid Access to Consultative Expertise) phone line. There is now expertise in post-COVID-19 care available Monday to Friday, 8 am to 5 pm. Experts from PHC, VCH, and Fraser Health are available to answer questions. We all learn more about COVID-19 almost every day…the clinic will adapt. So what is happening there today may look very different in a month, next week, next year.”

Another COVID-19 long-hauler I spoke with is a 46-year old health care provider at a Vancouver suburban hospital who asked not to be named because she doesn’t want to strike panic among past and future patients.

Although she had a sore throat in early February, she was not COVID tested until late March when a persistent cough began. She’s been off work since June when she developed severe headaches, dizziness, short term memory loss, an unsteady gait, hand tremor, light sensitivity, hearing and vision problems – ” a whole slew of things that resulted in a referral to a neurologist who basically attributes all the symptoms to anxiety.

“The so-called treatment has been appalling and insulting,” she said. She’s had no imaging tests because the neurologist wouldn’t order them. A visit with an infectious disease specialist was more productive.

“He is certain these symptoms stem from COVID and he thinks they could last a year or two.”

Apart from the symptoms that on many days prevent her from getting out of bed, she says the most difficult challenge is “not being believed, not being acknowledged.

“We seem to be without any sort of rehab centres for post-COVID and are totally lacking any sort of official BCCDC admission that “long COVID is even a thing, let alone tracking it.”

Another long hauler vented frustration about medical care seemingly unavailable for long haulers:

“I’m trying to receive the help I need but I seem to have hit dead end after dead end because I was ineligible for testing when I had COVID.” She is referring to the fact that B.C. was mostly restricting tests to health care and other essential service workers in the early stages of the pandemic.

Here’s an excerpt from the letter Dr. Henry sent to a large group of COVID-19 (or presumed COVID) survivors:

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