Hello and welcome to the first bi-weekly Long Covid Canada newsletter!

We hope that each week we are able to bring you the latest news, research, surveys and opinion pieces that you may have missed earlier that week, in one handy and concise format.

Long Covid in Canada: Research, Recognition and Rehabilitation

Research

Mast cell activation symptoms are prevalent in Long-COVID

“We hypothesized that baseline/pre-existing mast cell activation syndrome (MCAS, whether clinically recognized prior to COVID-19 infection or not) might explain hyper-inflammatory responses in acute COVID-19 infection and LC”

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Neuropsychiatric symptoms, regardless of severity of Covid, may be possibly due to an exaggerated host inflammatory responses

“Furthermore, up to a third of infected individuals experience a protracted post-viral syndrome following COVID-19 which is potentially of CNS origin given the dominance of neuropsychiatric symptoms such as fatigue and subjective cognitive difficulties.”

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Many experience severe gastrointestinal symptoms months after a negative nasal swab.  Direct viral persistence in the gut has been found in several cases.

“The case described in this report strongly suggests that prolonged gastrointestinal symptoms following SARS-CoV-2 diagnosis, with evidence of chronic inflammation 3 months post-diagnosis, are the direct consequence of SARS-CoV-2.”

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Persistent microclots have been found in the blood of those suffering from Long Covid

“We show that plasma samples from Long COVID/PASC still contain large anomalous (amyloid) deposits (microclots). We also show that these microclots in both acute COVID-19 and Long COVID/PASC plasma samples are resistant to fibrinolysis (compared to plasma from controls and T2DM), even after trypsinisation”

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Recognition

Canada and Long Covid

The government of Canada still has yet to provide any definitive guidelines for the diagnosis and treatment of Long Covid. Hundreds of thousands of Canadians of all ages across the country are suffering from the devastating and debilitating sequela. The lack of diagnostic guidelines and common knowledge of Long Covid prevents those impacted to have equitable access to health care and disability benefits (both private and federal programs). Long Covid clinics are sparse throughout the country and non-existent in some provinces. Clinics are inaccessible to those who were unable to obtain testing early on in the pandemic and for those who had an asymptomatic primary Covid infection or their Long Covid symptoms began far beyond the efficacy of PCR testing.

There are no financial supports or programs available to those who have Long Covid. Studies show that one in three of those infected with Covid, regardless of severity, age or underlying conditions, will go on to have symptoms past 12 weeks.

Here we present what other countries and health authorities are doing for their citizens living with Long Covid.

CDC Post-Covid Guidelines
CDC Post-Covid GuidelinesTitle
“A positive SARS-CoV-2 viral test (i.e., reverse transcription polymerase chain reaction [RT-PCR] test or antigen test) or serologic (antibody) test can help assess for current or previous infection; however, these laboratory tests are not required to establish a diagnosis of post-COVID conditions. SARS-CoV-2 RT-PCR and antigen testing are not 100% sensitive. Further, testing capacity was limited early in the pandemic so that some infected and recovered persons had no opportunity to obtain laboratory confirmation of SARS-CoV-2 infection.”
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NICE Covid-19 Rapid Guidelines
NICE Covid-19 Rapid Guidelines
“Do not exclude people from referral to an integrated multidisciplinary assessment service or for further investigations or specialist input based on the absence of a positive SARS‑CoV‑2 test (PCR, antigen or antibody) as long as the case definition criteria are met.”
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WHO Clinical Case Definitions (Delhi Consensus)
WHO Clinical Case Definitions (Delhi Consensus)
“Most patients who suffer from coronavirus disease 2019 (COVID-19) fully recover, but some remain with long-term effects on several body systems, including pulmonary, cardiovascular and nervous systems, as well as psychological effects. These effects appear to occur irrespective of the initial severity of infection, but occur more frequently in women, middle age, and in those with more symptoms initially/ The absence of both a single terminology and a clinical case definition have been repeatedly signalled as drawbacks to advance on research and management of these patients.”
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US Department of Health and Human Services
US Department of Health and Human Services
“Yes, long COVID can be a disability under the ADA, Section 504, and Section 1557 if it substantially limits one or more major life activities.9   These laws and their related rules define a person with a disability as an individual with a physical or mental impairment that substantially limits one or more of the major life activities of such individual (“actual disability”); a person with a record of such an impairment (“record of”); or a person who is regarded as having such an impairment (“regarded as”).10  A person with long COVID has a disability if the person’s condition or any of its symptoms is a “physical or mental” impairment that “substantially limits” one or more major life activities.”
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Long Covid Canada

On June 30th 2020, a cohort of Canadians and permanent residents penned a letter to all PHO and government officials warning of Long Covid symptoms impacting and disabling lives and livelihoods of Canadians across the country. A year and a half later, we still have no answers, no supports and limited access to post-covid clinics. To read more about our efforts to raise attention to Long Covid in Canada, please visit our Recognition page.

Rehabilitation

Germany

Multiple studies and research initiatives brought to light that Covid 19 is a serious vascular disease causing widespread vascular and epithelial damage. As well, microclots and blood abnormalities have been found in those suffering from Long Covid. Dr Beate Jaeger, a physician in Germany has been successfully treating some Long Covid patients with HELP apheresis.

Though there is no cure as of yet for Long Covid, please view our Rehabilitation page for more information on supports available to Canadians.

If you would like to connect with those living with Long Covid please join Long Covid Canada’s support group on Facebook. Be sure to follow us on twitter as well!