News from Canada

Posting mainly because it seems to be an official thing, funded by the CIHR. Looks OK, only question is whether it will sit on shelves.


Care Models for Long COVID
https://sporevidencealliance.ca/wp-...e-Models-for-Long-COVID_Update_2021.12.04.pdf

Context. It is estimated that up to 500K Canadian had or are living with Long COVID resulting in debilitating sequelae and disabilities that impact their quality of life and capacity to return to work or school. A new care model is needed for persons living with this complex and multi-systemic disease.

Objectives. To update the best-available evidence about care models for people living with Long COVID.

Design. Update of a living systematic review.

Method. We systematically searched nine electronic databases on October 5th and 7th 2021. Two independent reviewers screened titles, abstracts and full text. We included studies reporting on 1) people living with Long COVID and 2) proposing a specific care model. We extracted characteristic of studies, reporting of the care model implementation with the number of patients, clinical settings of care model, healthcare professions included in the care model, care model principles and care model components.

Results. In this update, we screened 1201 additional citations, read 65 full text and included 8 eligible articles reporting on international care models for Long COVID. The four main interfaces of our proposed patient pathway remain: coordination units to centrally receive referrals from both hospitalized and community-based patients, training of primary care teams to screen and support medical needs, integrated local multidisciplinary rehabilitation services and access to medical specialty clinics for advanced testing and diagnoses. We observe consistency for care model principles such as multidisciplinary teams and integrated care, and components such as standardized symptoms assessment and virtual care. The impact and costs of these care models are not yet reported.

Conclusion. Combining international evidence, contextualized Canadian initiatives and patient perspectives, a national public health initiative may be advisable to ensure sustainable support of provincial teams in their quest to support patients with Long COVID. This represents a unique opportunity to improve quality of care for all patients with complex chronic diseases in Canada.​

Health care is provincial in Canada. So I'm not sure how this can be made actionable. It's really a mess here for this. In the end health care services are local and don't see beyond their borders, only obvious and immediate problems.
 
Merged thread

Thousands of Canadians may have acquired long-term impairment from COVID. They need support


Some of these long COVID sufferers will join the ranks of working-age Canadians who are already coping with post-viral conditions like myalgic encephalomyelitis (ME), struggling to have their disability recognized and often unable to remain financially independent through work income alone. Even before the pandemic, persons with disabilities were at significantly higher risk of poverty, and made up the vast majority of caseloads in provincial welfare systems.

https://www.thestar.com/opinion/con...-impairment-from-covid-they-need-support.html
 
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Thank you @Mij

Good article.

Same old story with our governments though.

All along Canadian federal government data releases on the news, have counted those diagnosed with COVID, and those recovered. There has been very little official mention of LC, and certainly not in the daily counts.

Unless substantial changes are made to governments' sympathies and policies, the same nightmare that has befallen millions with ME will also be visited upon the potential millions with LC.

What percentage of the population must be adversely affected before governments act? My guess is 10 to 20 percent affected would not bring about government changes.
 
COVID long-haulers dealing with issues accessing financial assistance

The World Health Organization (WHO) estimates 10 per cent of people who came down with COVID-19 become long haulers. In Canada, there have been three million COVID-19 cases confirmed to date. That means roughly 300,000 people have suffered from long COVID, but it could be much higher.

https://toronto.citynews.ca/2022/03/08/covid-long-haulers-canada-financial-assistance/
 
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Thank you @Mij

Good article.

Same old story with our governments though.

All along Canadian federal government data releases on the news, have counted those diagnosed with COVID, and those recovered. There has been very little official mention of LC, and certainly not in the daily counts.

Unless substantial changes are made to governments' sympathies and policies, the same nightmare that has befallen millions with ME will also be visited upon the potential millions with LC.

What percentage of the population must be adversely affected before governments act? My guess is 10 to 20 percent affected would not bring about government changes.


There are for Canada some issues around Federal or Provincial responsibilities in health. I have little knowledge there but I expect that as things change the results will be uneven and reflect regional differences in understanding and care.

Also, there has been some mention of Long-Covid in Canadian news. How impactful that will be is hard to gauge though.

https://www.cbc.ca/news/health/long-covid-coordination-1.6306761

https://www.ctvnews.ca/health/coron...k-of-long-covid-with-patients-blood-1.5759416

https://globalnews.ca/news/7998787/long-covid-canada-long-term-disability-sickness-benefits/

There are more like this. I think the level of exposure here is probably similar to elsewhere. It is a matter of how they are perceiving LC, what they are doing about it and how will the gov'ts (both Prov/Fed) respond in terms of getting the health system to work for LC/ME.

I do see some hope here. But time will tell.
 
The Canadian government is conducting a national survey of Long Covid. Not sure what they mean by 2nd phase, haven't heard of a first one.

It's managed by Statistics Canada, the agency had already included questions about ME (not sure of language) and this is where the only available national data we have.

Not sure of what that test is capable of, but here is what they say
DBS testing is an innovative technology commonly used by scientists at PHAC to screen for transmissible diseases in Canada. It has a variety of uses such as testing for sexually transmitted, blood-borne infections (STBBIs) and testing for antibodies from previous infections such as COVID-19

Across all ten provinces, 100,000 randomly selected Canadians aged 18 years and older will have received invitations from Statistics Canada to participate in the survey. Over the course of the first week of April, the first 33,000 selected Canadians will receive a kit in the mail. Among the items inside is a link to the online survey with questions related to their general health, any chronic symptoms and conditions, their COVID-19 history and related symptoms, vaccination status, interactions with the healthcare system and medication use.

https://www.canada.ca/en/public-hea...-health-impacts-of-the-covid-19-pandemic.html
 
All along Canadian federal government data releases on the news, have counted those diagnosed with COVID, and those recovered. There has been very little official mention of LC, and certainly not in the daily counts.
You need to realize that reporting COVID cases is about pubic health, and is an obligation for both the Canadian and the provinces- in order to prevent spread and to save lives.

Public health is concerned about all communicable diseases; you may have noticed that there were warnings about Zika virus a few years back. These agencies (PHAC (Public Health Agency of Canada) and CDC) surveil what is going on around the world and would advise health units and citizens about threats to their health.

Now, PHAC and medical health officers would also be concerned about certain non-communicable diseases, namely the opioid crisis, but those are few. I would suspect they were involved in recommending everyone wear a safety belt when driving, and for children to be restrained in car seats back then when it was not mandatory.

In this case, PHAC and CDC are concerned about the infectious disease, with emphasis on "infectious". Chronic disease is simply not their department.
 
@Milo
Thanks for your comments.

However, I do understand the roles for these agencies. Of course these agencies are mandated to report on public health threats.

What I was pointing out was that Long COVID received very little mention by PHAC and other government agencies.

In my opinion, not noting LC appeared to be either an oversight, or perhaps a choice.

A couple nights ago two pwLC and a medical specialist were interviewed on the CBC TV program, the National. Good to see this issue finally getting more coverage.

ETA: the PHAC website notes "Prevent and control chronic diseases..."

https://www.canada.ca/en/public-health/corporate/mandate/about-agency/mandate.html
 
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Not exactly news from Canada but thought it was still appropriate to post here.

Danny Altmann, prof of immunology, posted this on Twitter
"Calling out to healthcare workers and others who were in the #Toronto SARS outbreak. Keen to be in touch and hear about long-term health outcomes. Please DM me and pass the message to any you know."

 
The SARS outbreak was almost 20 years ago, but at least they're interested in learning more.

Perhaps even go back 70 years and find out that M.E wasn't a mid-century campfire story after all?
 
From the article:

The letter also points to how studies have drawn links between long COVID and ME/CFS since the beginning of the pandemic. Given the potential overlap, the AQEM * argues, it only makes sense to include ME/CFS patients in the project.

*AQEM : Association québécoise de l'encéphalomyélite myalgique


Nevertheless, there still seems to be hope that ME will eventually be included in these clinics as well :

Reached for comment on Friday, a spokesperson for Quebec’s Health Ministry said they needed more time to answer questions about whether ME/CFS patients will have access to the clinics.

The network will include clinics across the province and will be co-ordinated by the Centre hospitalier de l’Université de Montréal (CHUM).

In an interview Friday, Danielle Fleury, president and associate director of the CHUM, said she understands the ME/CFS community’s frustrations and disappointment, “because they have been asking for this for a long time.”

Fleury said when the CHUM first discussed the project with the ministry, ME/CFS was among the chronic illnesses it hoped would be included. But the Health Ministry decided to start by funding the project for Lyme disease and long COVID, she explained.

However, she said it has already made another request with the ministry to include ME/CFS patients in the project as soon as possible.

“We’re waiting for the answer, but we believe it will be positive,” Fleury said. “The will is there and the work is being done to make sure it happens.”

However, what medical support or "treatment" will be offered ? No idea and it will certainly be to watch...
 
However, what medical support or "treatment" will be offered ? No idea and it will certainly be to watch...

The trend in Canada is group learning sessions about coping and symptom management- very little in terms of treatment other than LDN, POTS meds, anti-depressants for sleep. But having a specialized clinic capable of research and clinical trials would go a long way for us.
 
Letter to Christian Dubé, Minister of Health and Social Services
Minister,

We have taken note of the announcement that was made regarding the clinics that will be deployed for the management of symptoms of long COVID and Lyme disease.

We must admit that we are surprised, even shocked, to find that myalgic encephalomyelitis (ME) – also called chronic fatigue syndrome – is not included as agreed. Since the beginning of the pandemic, the similarity between the latter and the long form of COVID has been raised many times by the entire scientific community.

full letter
https://thecanadian.news/letter-to-christian-dube-minister-of-health-and-social-services-2/
 
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Extract from the letter written by AQEM (pwme association) :

It was the hard-won knowledge of people with ME over all those long years of stigma and rejection from the medical community that allowed you to leave with a head start in understanding the portion of long-COVID patients who present with ME-like symptoms.

We have been used as guinea pigs for a very long time (think here of the extremely damaging graduated exercise therapy that was prescribed to them) without having any real support. Unfortunately, once again, patients who are part of the myalgic encephalomyelitis community will be pushed aside, in a project that was originally intended to be for them.

The " head start ", to which AQEM refers in its letter to the Minister of Health, is I believe to have alerted and informed early about the possible PEM of long-COVID patients. I think that they were in contact with Simon Décary, professor of physiotherapy at the University of Sherbrooke. At the moment, in Sherbrooke (Province of Quebec), there is the only clinic for long-COVID patients. The waiting list is very long and the clinic is overwhelmed.
 
Pressing for pwme(s) to be a clientele also included in future clinics for Lyme disease and long COVID, the AQEM (Quebec Association for Myalgic Encephalomyelitis) has decided to send a letter of reminder to the Minister of Health of the Province :

"A week later: where are we with this announcement from the Ministry of Health and Social Services? "

" We knocked on all available doors, on behalf of AQEM and all its members, in search of clarifications and answers. Some were reassuring about the inclusion of ME in these clinics, but we remain extremely cautious until an official announcement from the MSSS. The thousands of Quebecers with myalgic encephalomyelitis, their loved ones and their allies have the right to demand answers and to be heard. We believe that the department has had ample time to consider the issue to respond to us and open the discussion publicly. We will therefore send a follow-up letter with a request for an official meeting next week."

https://aqem.org/une-semaine-depuis...-de-lyme-laqem-reclame-toujours-des-reponses/
 
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