Cochrane Canada guidelines for post-COVID19 condition / Long Covid

rvallee

rvallee

Senior Member (Voting Rights)
There doesn't appear to be a thread for the federally-funded program contracted to Cochrane Canada and the McMaster University GRADE Centre to develop guidelines for Long Covid, which they call Post-COVID19 condition.

The total funding appears to be $9M CAD. So far a few surveys have been sent out to people who have registered to participate.

https://canpcc.recmap.org/
 
Today, the initiative has released 11 "Good practice statements", that to my opinion amount to "health care professionals and public health officers should do their job". So far they have not done their job, so I doubt this will matter much. In my responses to the surveys over those statements, I mostly commented that this is generic fluff that will make zero difference to patients. Sure looks like it.

https://canpcc.recmap.org/recommendations?lng=en

The statements:
  1. Public health officials and health care professionals should educate the public and patients on current ways to prevent infection or re-infection with COVID-19
  2. Public health officials should monitor and communicate the risk of COVID-19 transmission in their communities to inform the public, allowing them to take measures to prevent infection and reinfection and reduce the risk of development of post COVID-19 condition
  3. Health care professionals should evaluate people for the possibility of post COVID-19 condition (PCC) if they have symptoms that have negative impact on daily activities or quality of life and persist beyond 12 weeks after the diagnosis of COVID-19
  4. Health care professionals should ensure a confirmed, suspected, or probable COVID-19 infection occurred before post COVID-19 condition (PCC) symptoms appeared in order to suspect the condition
  5. Health care professionals should actively listen to and validate the lived experiences of people with post COVID-19 condition
  6. Health care professionals should actively cultivate an accessible, appropriate and culturally responsive environment that fosters compassion and respect for identities, values and preferences of people with post COVID-19 condition
  7. Health care professionals should inquire about limitations in daily activity and quality of life, on an ongoing basis, for people with diagnosed or suspected post COVID-19 condition (PCC) who experience symptoms
  8. Healthcare professionals’ initial evaluation of children and adolescents presenting with persistent symptoms after COVID-19 infection should include a comprehensive clinical assessment
  9. Health care professionals should ensure that there is a plan of care decided with persons who present with symptoms associated with post COVID-19 condition (PCC), including options for follow-up or additional support for persisting or relapsing symptoms
  10. Health educators should provide training to health care professionals and trainees to build knowledge, skills, and competence to recognize and validate people’s symptoms associated with post COVID-19 condition (PCC)
  11. All Canadian health care systems should ensure that there are health care professionals accessible to people who have concerns about symptoms potentially associated with post COVID-19 condition
 
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A request for comments has been put out for the latest recommendations, with one week to answer. I still don't know what the point of this project is, it seems like a complete waste of effort that will publish a series of reports that no one in charge will read or care about.

The survey: https://www.research.net/r/CANPCCRecommendationCommentsPublic, and in PDF format: https://canpcc.ca/app/uploads/2024/03/CAN-PCC-Recommendations-Public-Comment-Survey_2024-03-27.pdf.

They are asking for comments on 3 recommendations:
  1. CAN-PCC suggests masking for asymptomatic individuals in community settings vs. no masking be used for the prevention of COVID-19 infection to prevent post COVID-19 condition (conditional recommendation based on low certainty evidence).
  2. In individuals with post COVID-19 condition, CAN-PCC recommends assessing for co-morbid depression (strong recommendation based on moderate certainty evidence about the effects).
  3. CAN-PCC suggests that care navigators be implemented for people with post COVID-19 condition in settings where feasible and with low cost (e.g., where care navigator programmes are already in place). When not feasible, other strategies can still be implemented, such as providing potential points of contacts with information they can provide to ensure that people with post COVID-19 condition can overcome barriers. (conditional recommendation, very low certainty evidence in effects)
Cochrane Canada and McMaster University are paid $8M CAD for this.
 
Another set of recommendations were put to public input. The survey can be answered here, before April 22: https://www.research.net/r/CANPCCRecommendationCommentPublic.

The survey can be found in PDF form here: https://canpcc.ca/app/uploads/2024/04/can-pcc-batch-2-public-comment-english.pdf.

The recommendations are:
  1. The CAN-PCC Collaborative suggests for masking for caregivers, workers and visitors in long-term care homes be used for the prevention of COVID-19 infection to prevent post COVID-19 condition (conditional recommendation, very low certainty in the evidence).
  2. The CAN-PCC Collaborative suggests masking for asymptomatic staff, patients and support persons in out-of-hospital clinical settings for the prevention of COVID-19 infection to prevent post COVID-19 condition (conditional recommendation, very low certainty in the evidence).
  3. The CAN-PCC Collaborative suggests not using low-dose naltrexone for people with post COVID-19 condition (conditional recommendation; very low certainty in the evidence).
Not exactly eye on the ball. Prevention sure is important but very unlikely to make a huge difference for this issue alone, while this mostly ignores those who are ill.
 
Today, the CAN-PCC Collaborative published its first two recommendations, both conditional (i.e. optional):
  1. The CAN-PCC Collaborative suggests masking for asymptomatic adults in community settings be used for the prevention of COVID-19 infection to prevent post COVID-19 condition (conditional recommendation based on low certainty evidence). Remarks: This recommendation reflects mask use for personal protection. The panel compared evidence on type of mask, the panel notes that during high transmission risk there is a small additional benefit of masking with a respirator (N95/KN95) compared to a medical/surgical mask in community settings. This should be taken into account when selecting type of mask for this recommendation. The panel did not assess cloth masks. Rated: low certainty of evidence.
  2. The CAN-PCC Collaborative suggests that care navigators be used for people with post COVID-19 condition (conditional recommendation, very low certainty in the evidence). Remarks: A care navigator can be a health care professional or someone who has experience with or training about the health care and social system, who coordinates contact with care providers (not provide care) to assist people to overcome barriers to care in order to receive timely and appropriate health care or support related to social, financial, and overall well-being. Rated: very low certainty of evidence.
For recommendation #2, no such thing exists in our health care systems, so this is basically about having a family member or friend help navigate a system hostile to the concept and unwilling to do much about it.

The Canadian health care system is built entirely around having a GP manage everything. 25% of the population has a GP. Having a GP does not mean ever being managed, they don't have time for any of this, don't even have any training or resources to help here.

I have no idea what anyone involved thinks this is going to accomplish. But, hey, $9M CAD, who can say no to that?

https://can-pcc.recmap.org/recommendations
 
In England PCC stands for Police and Crime Commissioner which is a bullshit role conjured up to get the public to trust the government that they’re doing something about police accountability and “taking the public’s concerns on crime seriously” and also crucially to get the public to feel like the police are accountable to them because they’re stakeholders as voters (if they do), when of course the police never were and never will be. We had some elections for them last week.

This report reminds me of the above trying to make a non offer look like an offer.


Everything I hear about the Canadian healthcare and public health system leaves me appalled. Only 25 % of people even technically have a GP…. God I guess we’ll be there before long considering how fast our system has been dismantled here.



Moving back to the terminology…

IMO health officials get to re name long Covid, when they renounce their powerful wealthy masters and their gratuitous service of self interest in making sure it’s apparent that they work in service of “the economy” rather than the people, and instead demonstrate a commitment and aptitude for improving public health and safety. When everyone of us in every country get to breath in well ventilated building with filtered air, free and constantly updated COVID-19 testing and vaccines, employer, state and healthcare settings will respirators provided of FFP2+/N95+ etc for everyone and mandatory for everyone for who it is safe to wear them, full sick pay for the full time to recover from infections (a little incentive for employers to up their health and safety at work re infectious disease) and provisions of virtual and telephone access to society for everyone who requires it. Billions and billions in funding fought for and won by them, on behalf of their fellow humans. When they decide to put their professional skills to use solving the problems of finding, fully testing and then delivering t everyone effective treatments. When gains in public and individual health outcomes are achieved because they (rather than we) shouted from the hills relentlessly about how mass infections were going to fuck up the population, short, medium and long term, and that governments better commit to taking action rather than pissing about then writing in detail about their own apathy and halfhearted approach and how yes it’s totally failed to deliver satisfactory healthcare or improved outcomes for sick people but they conclude that it’s still best to just keep doing it (nothing much or less than that) over and over and over and over.

None of us are Post Covid. Covid hasn’t gone anywhere. There’s currently no means at all to continue to exist in the context of a society and not get Covid again and again and again for the rest your curtailed by Covid damage lifetime.

Post Covid Condition is Inaccurate terminology, which is something that they like to say it is important to them avoid as medical professionals, but we all know thats an untruth, sometimes via themselves always directed at us, this one would appear to be the perfect example. It’s certainly very much a less accurate description than the (needlessly) long COVID that they’ve all condemned us to with their acquiescence to the expectation that they will serve society (well not society but shush) via the protection of the material interests of those with profits to be made.


Take Control Of The Narrative And Ideological Framework Not The Problem You Are Ostensibly Responsible For. Good God Man Any Fool Knows This.

Getting Back To Normal by Pretending None Of This Is Happening And If People Still Suspect That It Is In Fact Happening A Bit Of Hand Wringing And Paper Shuffling Along With Some Derogatory And Or Minimising Language About Sick People Strategically Published Is A Fail Safe Strategy For Prevention Of Harm To Our Own Careers and Our Pay Masters Profit Margins By Getting People To Shut The Fuck Up Expect Nothing Good From Us For The Likes Of You Disease Ridden Masses Remember To Admire Our Expertise Our Reasoned Arguments Regardless The Material Effects Upon Your And Your Loved Ones Lives No Matter How Grave These May Be To Do Otherwise Would Be Unwise We Might Even Be Forced To Refer To Your Protests And Appeals For Better Or Indeed Any Treatment As Polarising And You Wouldn’t Want That Now Would You?

Lead Author: It Doesn’t Matter They’re All At It. The Mendacity Is Omnipresent et el.

Anyway sympathy to all living under the Canadian regime for you don’t get the recognition you deserve for having such a rotten system.
 
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Two more recommendation proposed. I still don't see the point of this process, other than, hey, $9M for a low-effort report that no one will care about anyway.

https://canpcc.ca/app/uploads/2024/05/can-pcc-batch-3-public-comment-english.pdf
  1. In non-hospitalized adults with post COVID-19 condition who have a new acute COVID-19 infection, the CAN-PCC Collaborative suggests using metformin rather than not using metformin (conditional recommendation; very low certainty in the evidence).
  2. Supportive care at home should be provided to people with post COVID-19 condition who are unable or need an inordinate amount of time to perform their activities of daily living (ungraded good practice statement).
IIRC, all of their recommendations so far have been low of very low certainty of evidence.
 
Sean said:
Low or very low certainty/quality of evidence.

One could almost be excused for thinking there is a pattern here.
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Yeah I guess they’re just like thinking…Look, we’ve been doing this forever, all the countries are at it. It’s working just great, if it ain’t broke don’t fix it.

I don’t think sick and dying people factor into their calculations.
 
rvallee said:
This process has so far been mostly useless and extremely disappointing, but the Cochrane-McMasterU collaboration funded by the Canadian government ($9M!) is now recommending CBT and GET for Long Covid, so it would be worth people commenting on it.

https://www.research.net/r/CAN-PCCRecommendationCommentPublic
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I thought perhaps only Canadian residents could comment but when I went to the link I saw that they are taking comments from people outside Canada.

The first question is "In which province, territory, or region do you currently reside?" The last option for that question is "International (please specify your country)"
 
From the looks of it, this round of proposals may get 10-20x as many responses as the others, maybe even more. They have one every month or so, with about a handful of items, and I haven't once seen anyone talk about them on social media. This one has been shared a lot.

From the recommendations they then publish, it doesn't seem like comments matter, though. They apply the standard principle of "when you don't have good evidence, just use bad evidence and slap a 'weak' label on it that everyone will ignore anyway". EBM gonna EBM. They were paid to produce garbage evidence, and they will produce garbage evidence.
 
Everything Wrong with Canada's Proposed Long COVID Recommendations
Simon Spichak
The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.

“The first thing that strikes me about the recommendations is that they are opposed to current clinical guidelines in Long Covid and ME/CFS,” said Todd Davenport, professor of the physical therapy program at the University of the Pacific. He added the recommendations are too strong given the low level of evidence underpinning them.
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On Bluesky, Todd Davenport comments (requires BSY login) —

Needless to say, Cochrane is really ruining their brand with this nonsense.
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I'm not sure if this is the right thread - please move, or start a new thread, if needed!

Everything Wrong with Canada's Proposed Long COVID Recommendations
by Simon Spichak
November 25, 2024

https://simonspichak.beehiiv.com/p/...-canada-s-proposed-long-covid-recommendations
The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.

Researchers involved in the organizations Cochrane Canada and the McMaster GRADE Centre at McMaster University are developing guidelines to prevent and treat Long COVID in Canada. Their effort is supported by the Public Health Agency of Canada and their recommendations would likely have major sway in the way Long COVID is treated if adopted.

Every month, they release new recommendations and provide an opportunity for public comment. On November 20th, the group released a new set of Canadian Post-COVID Condition (CAN-PCC) recommendations which propose harmful and ineffective treatments: Exercise to prevent Long COVID and cognitive behavioral therapy (CBT) to treat post-exertional malaise (PEM).

The recommendations are made on the basis of what CAN-PCC describes as “very low certainty” evidence and disregard the lived experience of patients living with Long COVID and similar conditions like myalgic encephalomyelitis (ME/CFS).

Several patient advocates and groups have mobilized in response. Adriana Patino, who leads Long COVID Canada said that group members were shocked and angered by the recommendations who are losing trust in the guidelines as the authors “are not following the most recent research nor listening to the patients' voices.”

Many don’t want to comment on the recommendations any longer because they feel they aren’t being listened to in the first place.
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There's also a thread on Bluesky, which is where I first saw this:

https://bsky.app/profile/spichaksimon.bsky.social/post/3lbskfoswgs2s
 
rvallee said:
This process has so far been mostly useless and extremely disappointing, but the Cochrane-McMasterU collaboration funded by the Canadian government ($9M!) is now recommending CBT and GET for Long Covid, so it would be worth people commenting on it.

https://www.research.net/r/CAN-PCCRecommendationCommentPublic
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I thought that McMaster was so closely linked with Cochrane that it pretty much was Cochrane Canada but I obviously got that wrong if they have a ‘partnership’ that counts as having two organisations


I am right in thinking that somewhere I’ve seen a lot of overlap between these two? Is it in McMaster either funding or hosting Cochrane or going to be or just staff in past reviews or something? Anyone remember?
 
NelliePledge said:
Dear people with Long Covid and Long Covid organisations this draft guideline is exactly why you need to add your support the S4ME petition for the removal of the harmful 2019 review of exercise for CFS

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

could someone on Bluesky please let Simon Spichak know about the letter and petition and ask him to share it.
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I just did. It's definitely very relevant, as it shows that Cochrane simply cannot be trusted, only pursue their own agenda.
 
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