Still Here, July 24: Links and transcript

Summary

In this episode of Still Here: Contributing writer Simon Spichak discusses what experts say are Canada’s “contradictory” and “concerning” latest guidelines for Long COVID, the CAN-PCC.

Plus, in research, we talk about a new study group to test the monoclonal antibody Pemgarda for Long COVID and post-vaccine syndrome, as well as a new study from Taiwan that found 14% of children developed Long COVID after being infected with SARS-CoV-2.

And we share updates on our summer fundraiser, too.

Find our Long COVID news and commentary podcast on Spotify, Apple Podcasts, Pocket Casts, Amazon Music, iHeartRadio, or listen below and jump to the start of the podcast transcript. We’re currently experimenting with our format, so this is an episode sans COVID trends focused on just one top story.

Jump to a specific part of the transcript:

• Intro
• New Canadian guidelines on Long COVID “concerning”, “contradictory”
• Research
• Outro

Still Here overlaps with The Sick Times’ newsletter, which publishes weekly.

Mentioned in this episode (in order of appearance):

• The Sick Times: Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”
• Canadian Guidelines for Post-COVID-19 Condition (CAN-PCC)
• The Sick Times: Research updates, July 8
• The Sick Times: Frustrations, Denials, Long Drives: Immunocompromised People Can’t Access a Lifesaving COVID-19 Drug
• The Sick Times: Invivyd Chairman Marc Elia: The bureaucracy is killing people with Long COVID
• The Sick Times: Summer fundraiser: Help keep our essential work going into 2026

Additional audio in this episode: 

• Rude Mechanical Orchestra: Which Side Are You On? (orig. Florence Reece) 

Transcript

Intro (0:00) 

[Instrumental snippet of theme song, the Rude Mechanical Orchestra’s rendition of “Which Side Are You On?” begins playing.]

James Salanga: Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.

[Instrumental ends]

Miles Griffis: Hi, I’m Miles Griffis.

Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times. 

James: I’m James Salanga, and I’m Still Here’s producer.

Miles: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the Long COVID crisis.

Betsy: But here at The Sick Times, we’re not. We’ll continue to bring you the latest Long COVID news and commentary each week.

Miles: Without pandemic denial, minimizing, or gaslighting.

James: And we’ll do that on our website, social media platforms, our newsletter and this podcast. We’re still experimenting with our podcast format, so this one is just one story plus a short research update and some updates on our fundraiser.

In this episode, reporter Simon Spichak shares more on his recent investigation into the newly released Canadian guidelines for Long COVID.

Miles: Alongside that, we’ll also share some other Long COVID research updates.

In today’s episode, we have some news about a new study group to test the monoclonal antibody Pemgarda for Long COVID and post-vaccine syndrome, as well as a new study from Taiwan that found 14% of children developed Long COVID after being infected with SARS-CoV-2.

James: And just a quick reminder that our summer fundraiser is still ongoing.

Of course, thank you so much to everyone who has donated so far.

You can also support us by sharing our work if you don’t have capacity to donate, and the link to our fundraiser will be in our transcript.

And after a quick musical break, we’ll get to our interview with Simon about why some experts are very concerned about Canada’s new Long COVID guidelines.

[instrumental segment of theme song plays]

The Sick Times: Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning” (1:55)

James: In Canada, the McMaster Grade Center has been rolling out recommendations for Long COVID in collaboration with Cochrane Canada, an arm of the Cochrane collaboration.

That’s the same group behind a controversial 2019 review that recommended exercise and cognitive behavioral therapy for people with myelgic encephalomyelitis, using poor-quality evidence.

Some of the over 100 new Canadian guidelines for post-COVID condition, or CAN-PCC, echo those same recommendations, and each batch of the guidelines has only had public comment open for a single week.

People living with Long COVID spoke with The Sick Times and said these new guidelines not only excluded their voices, but are unethical and could likely put people in danger.

Contributing writer Simon Spichak is here to say more about the story.

You know, Simon, I’d love to hear you share a little bit more about the structure of the CAN-PCC.

What are the specific guidelines so far that have brought up exercise and CBT?

And what did you hear from people about those guidelines?

Simon Spichak: So I’m in tune with a lot of what’s going on in terms of long COVID and ME/CFS in Canada.

I’ve been covering that for a few different outlets.

And one of the things that I saw popping up was some information about the CAN-PCC.

Basically, there’s this giant project to get some recommendations for treating what they call post COVID-19 condition or what a lot of us call Long COVID.

So this was funded from February 2023 to March 2025.

Basically, what happens is they have a bunch of guideline teams where there is about 13 or so representatives.

Most of them are researchers or including one patient or one person with lived experience.

So you have about 13 people on each team.

And then there’s a guideline development group that oversees each team.

Each of the guideline teams makes specific guidelines and recommendations related to specific things around Long COVID and around COVID.

And some of the things that turned out to be problematic were recommendations that came out around exercise and cognitive behavioral therapy.

So one of the first was recommending exercise for preventing Long COVID.

The basis of making that recommendation, even though the recommendation is made with what they call low certainty.

And even though it’s conditional, which means they’re not super sure about it, … they still make the recommendation. It’s based on 12 studies. None of those 12 studies actually check to see whether the people that exercise develop Long COVID or not.

The other kind of pair is one recommendation that says exercise for people with Long COVID who don’t have post-exertional malaise. Another one recommends in a research setting to do exercise for people with Long COVID who have post-exertional malaise.

And another recommendation for cognitive behavioral therapy in addition to pacing.

On the surface, some of these might seem reasonable, but when you dig in and when you talk with a lot of patients and a lot of advocates who are following these guidelines closely, they mirror a lot of what’s been done within the ME space.

One of the issues with some of the exercise recommendations, for example, is that the studies didn’t properly assess post-exertional malaise, which is one of the more common symptoms in Long COVID.

So it’s very difficult to make a recommendation, even when it’s with very low certainty, if you don’t know whether the people who are in the studies had post-exertional malaise to start with, with the research recommendation to actually look at exercise in Long COVID for people with post-exertional malaise.

There’s lots of reports of patients who have been harmed by exercising when they have post-exertional malaise.

And in terms of the cognitive behavioral therapy, there is a real concern that that recommendation might be taken and misinterpreted as meaning that you can use the cognitive behavioral therapy approach, which is a form of psychotherapy. Which is great for some mental health conditions, but people are concerned that it might be used to ask people to reframe their illness and think more positively to treat their Long COVID.

The CAN-PCC told me that all of these recommendations are based in this whole system that they use, called the grade system, which basically uses all of these guideline teams to assess the evidence.

One of the experts I spoke to is Dr. Todd Davenport, and he talked a little bit about some of the exercise recommendations, and this is what he had to say.

[Clip from Todd Davenport interview: Sort of feels like we’re going back to relitigate ME/CFS all over again, setting aside the information that we have on systems-level abnormalities, cellular abnormalities related to metabolic deficits.

Feels like we’re going back and encouraging people to ask and answer the same research questions over and over again.]

Simon: To be fair, a spokesperson for the CAN-PCC told me that the seven days was sufficient, as evidenced by the number of responses they got in their surveys.

James: Even though you got that response from the CAN-PCC, you’ve brought up what I wanted to ask about in my next question, which is that these guidelines are really running counter to established evidence and lived experiences from people who have post-exertional malaise.

And so how did these recommendations come to be included anyway?

Simon: That’s a great question.

I honestly don’t know.

They go by this very bureaucratic system to develop their guidelines. What we can say is a lot of the patient advocates that we’ve spoken with, a lot of researchers, and a lot of guidelines, including guidelines for ME/CFS, like the nice guidelines don’t recommend some of these approaches.

And there’s always the risk that someone might see, “Oh, you can try exercise for post-exertional malaise and research settings. If it’s good enough for research, then it’s good enough for my patients.”

And Long COVID is a place where we do have a lot of patients going for experimental therapies or asking their doctors, you know, what else could we potentially try?

So that’s one of the other concerns there with leaving exercise with post-exertional malaise as a research recommendation.

James: You spoke with Adriana Patino, who runs a large Long COVID support group, and she’s also a patient-advocate.

Here’s what she had to say about lived experience following exercise recommendations.

[Clip from Adriana Patino interview: I used to be a competitive swimmer before.

We’ve tried our way to exercise our way out of the illness and it only made it worse. So for me personally, when I saw that recommendation, it was like horrible.

Like, what are they even doing?

That’s when it tells you the most that they’re literally not listening to the patients or the research.]

Another area of concern for people with Long COVID in the CAN-PCC has been its pediatric guidelines.

Could you say a little bit more about that and some of the concerns people have?

Simon: So when I was writing an earlier story about pediatric clinical trials, I ended up talking to quite a few Canadians who told me that they were getting care by going to clinical trials in the US.

And I heard quite a few stories about people who say that doctors at one of the most prominent children’s hospitals in Canada called Sick Kids, that they were being sent to a somatic clinic and they felt that their children’s symptoms were being psychologized.

So a group of parents was really concerned about [the fact that] seven of the 13 guideline team members for the pediatric guidelines were affiliated with Sick Kids.

The other concern there was early on, there were some recommendations that really emphasized the mental health aspect of things and parents successfully sent a letter, had a dialogue and that recommendation never went through.

The new recommended guideline isn’t for mental health this time, but it’s for recommending exercise for kids with Long COVID, noting that you should take note of post-exertional malaise.

Basically, it’s offering the same recommendation for adults that’s been really, really criticized by a lot of the advocates.

It does seem to be following a pattern where exercise and mental health, even though the evidence is very low certainty and even though the recommendations are conditional, meaning that they’re not super strong, they’re still being recommended at the end of the day.

So that was recently sent out in the most recent survey of pediatric guidelines.

The CAN-PCC spokespeople told me that Sick Kids is one of the best children’s hospitals in Canada and when they issued a public call for participation from researchers, healthcare professionals, patients and caregivers, lots of people from Sick Kids decided to join, and they said that Sick Kids is among the most reputable pediatric hospitals around the globe.

So logically, there are many participants from Sick Kids and that ends up making up the majority of the panel.

James: Speaking of other folks who tried to influence how the guidelines were shaped, you also looked into the potential influence of Paul Garner, who’s a professor emeritus at the Liverpool School of Tropical Medicine and also a proponent of what he calls the mind-body approach to ME and Long COVID.

Could you say a little bit more about that and what you found?

Simon: Yeah, he specifically refers to it as the biopsychosocial approach.

And basically, what I was hearing from a lot of patient advocates was a lot of confusion over where some of these guidelines are coming from and they were concerned that there was some influence coming from prominent researchers — not just Paul Garner, but others who had pushed the idea of graded exercise therapy and various cognitive therapy approaches for treating ME.

So I ended up filing an access to information request in Canada.

I only got back emails from Paul Garner, and Paul Garner had sent quite a few emails with different suggestions and recommendations for the committee.

So he suggested that they included experts on psychosomatic conditions, as well as recovered patients.

And recovered patients are basically people that say that they recovered from Long COVID and a lot of these recovered patients say that they use various mind-body approaches or unproven therapies that often cost a lot of money and have a lot of really shoddy research papers backing them.

And Paul Garner was suggesting that they look into a lot of these what he calls biopsychological social approaches.

He’s also a big believer that these conditions are the result of deconditioning rather than other biomedical processes.

So he thinks that things like exercise would work because the muscles are deconditioned, but of course there’s recent studies from Rob Wüst that show that this isn’t really the case and that there’s a difference between post-exertional malaise in these conditions and in deconditioning.

Paul Garner shared some screenshots of them being kicked out of another Long COVID Facebook group for posting a video of an expert explaining post exertional malaise as a psychological condition.

And he did not really acknowledge the views of people who were in these groups.

And he said that the groups are a nightmare in terms of keeping patients fixed on their symptoms, fixed on the biomedical cause, fixed on pacing and fixed on excluding anything about psychosomatic approaches.

So a lot of patients were very sort of disturbed that he had joined these groups.

Some had told me that these groups are basically a lifeline for them for support because people don’t just join these groups to recover.

These are also spaces where people can meet other people that are affected with the same illness.

And the very interesting thing from the emails is that there was absolutely no response from the CAN-PCC administrators to any of Paul Garner’s suggestions or him discussing that he had someone join a patient group to assess things out for them.

The CAN-PCC basically told me that Paul Garner had no influence on the CAN-PCC guidelines because Paul Garner was not involved on any of the guideline teams.

At some point, the emails stopped.

So I did ask both the CAN-PCC and Paul Garner if there were any additional emails through private channels or phone calls.

Both of them had told me that there was no additional communication between groups.

Paul Garner, he also — funny enough — criticized the CAN-PCC guidelines for being poorly worded and convoluted, which is something everyone I spoke with agreed upon.

James: You had mentioned earlier that one of the potential impacts of these guidelines and especially the kind of lack of clarity in the wording is that some folks with Long COVID might stumble upon them and say like, “Hey, maybe I should try exercise to alleviate what I’m experiencing”, and then further worsen their symptoms.

And in general, how might these guidelines affect the landscape of Long COVID care in Canada?

Simon: Well, right now what we’re seeing is a lot of publicly funded clinics closing, and there’s a lot of for-profit physiotherapy clinics that are opening up. And a lot of these physiotherapy clinics might be using some of these guidelines to develop different exercise regimens or to provide psychological care.

So I think in the absence of any publicly-funded sorts of clinics, which already didn’t have a great relationship, there is justification for using some of these approaches, which, again, are going to be costly within a private physiotherapy clinic or within a private physio setting and this is kind of what people are going to be left with.

The guidelines themselves, the website is difficult to navigate.

I’m sure people can look up the CAN-PCC guidelines themselves, take a look at the website, see how easy or how difficult they find it to navigate.

I spoke with Funmi Okunola, who runs Long COVID Answers, and she’s another Canadian clinician.

She also said the guidelines were really confusing and would be difficult to sort of use in practice.

A lot of the guidelines that are really, really long have lots of caveats in them, and it’s kind of hard to read them at a glance and really sort of understand what they’re saying.

Again, that’s my opinion as a journalist, and that was also the opinion of several folks I spoke with. And I mean, even Paul Garner felt that some of them were poorly worded and convoluted.

James: With that being the current state of the guidelines of the CAN-PCC, what’s next?

And is there anything else that you want to share that maybe didn’t make it into the final written piece?

Simon: I think the very sort of interesting thing is looking at how Long COVID care is sort of falling apart at the seams, where you have — not just in Canada, but in many other countries — you have Long COVID clinics shutting down, you have the push toward private practitioners which are going to charge more, which is going to make treatment a lot more difficult to access.

There’s also the story about how pediatric patients are being treated in Canada.

And I’ve heard from lots of parents already about how their kids have been treated but many are not willing to go on the record because that could jeopardize the care that they do receive.

Looking at how children are being treated in Canada, I think that’s a really sort of interesting story that’s still there to explore.

James: That makes sense.

Simon, thanks so much for coming and sharing a little bit more about the story that you wrote and about the CAN-PCC.

Simon: Yeah, thanks for having me on.

James: Folks can read Simon’s story at thesicktimes.org and we’ll leave a link to the CAN-PCC in our transcript as well if you are interested in looking at those guidelines yourself.

And next, we’ll go to a research update.

Research (19:38)

[Miles’ voice echoes the word “Research” accompanied with a sound excerpted from the theme song]

Miles: In research, there is an exciting new announcement from the biotech company Invivyd.

They announced the Spear Study Group, S-P-E-A-R, to test the COVID-19 monoclonal antibody, Pemgarda, for Long COVID and post-vaccine syndrome.

Invivyd makes Pemgarda and the group plans to further investigate the drug with further clinical research.

Members of the group include prominent Long COVID researchers, Michael Peluso, Amy Proal, and David Putrino.

We’ve covered Pemgarda a little bit in the past.

Last summer, we covered access issues to it that have been improving over the course of this year.

And we also featured chairman of Invivyd, Marc Elia, an op-ed from him earlier this year where he shared his experience with Long COVID and how even as the chairman of Invivyd, he’s unable to access Invivyd for possible treatment of Long COVID.

This is an exciting development.

We know there are other monoclonal antibody studies happening.

There was a recent one that was announced at the Polybio Symposium that Michael Peluso and collaborators led.

And it did not show an effective change, but Pemgarda is a different monoclonal antibody.

So there’s still a lot of hope that these drugs can help people with Long COVID and PVS.

Betsy: I mean, I think I would just add with the study that Michael Peluso shared preliminary results from at the Polybio Symposium a few weeks ago — you know, those were preliminary results, and we know that those researchers are still doing more analysis.

And the researchers in this new group, Peluso as well as Amy Proal and David Putrino, are all folks who are really interested in understanding the underlying biology of Long COVID.

We can assume based on their track record that they’re gonna be doing really in-depth testing and not just testing the drug and like asking people about their symptoms, but really trying to understand what’s going on and what’s helpful.

I think we’ll learn a lot from this research.

So it’s exciting to see.

Miles: They are [researchers] testing the monoclonal antibody Sipavibart, which was approved for the pre-exposure prophalaxis of COVID-19 in Japan and the EU. That has some data showing it may help in Long COVID as well.

And this is happening in Florida and it’s led by researcher Nancy Klimas.

So it’s exciting to see all these different areas of monoclonals being expanded and studied right now.

So hopefully we get some interesting and positive results in the future.

This is definitely a story we’re gonna look into as we go forward this fall.

Betsy: And then another research update is a new study from researchers in Taiwan that was published recently in the journal Pediatrics and Neonatology.

So these researchers followed about 800 participants, children under age 18, including about 570 who were infected with SARS-CoV-2 between June and November 2023.

And then another 200 or so who were not infected.

And of those kids who had COVID, about 14% developed Long COVID.

So the finding is in line with other research about Long COVID in children.

But it is, I think a bit unique to see this coming out of Taiwan.

A lot of the research on Long COVID in children has been from the US, the UK, particularly like the RECOVER, big National Institutes of Health program in the U.S. has been doing a lot of pediatric Long COVID research and publishing some papers recently.

But it’s good to see this evidence kind of coming in from other places as well.

And the authors of the paper also noted that kids with Long COVID had a lot of different symptoms, both physical and mental issues with school, issues with day to day lives.

So just kind of more evidence that Long COVID in children is a big problem on a global scale.

Miles: So there was another study in New Zealand that was published recently of 4,200 children.

And it found that over 20% of those who had covered suffered new health difficulties following the COVID infection for over three months.

So this was just interesting to see these two studies kind of come out in the similar time and show this trend.

The Sick Times: Summer fundraiser: Help keep our essential work going into 2026 (23:53)

Betsy: And then finally, we wanted to give a couple updates about our summer fundraiser.

As you might remember or know, if you’ve been reading our newsletters and listening to recent episodes of the podcast, The Sick Times is running a reader fundraiser over the month of July.

Our two main goals are to raise $30,000 this month and to have 100 new people sign up to be monthly donors.

That basically means you set a donation, can be $5, can be $10, $20, whatever is feasible for you and just have that occur every month.

Those kinds of donations are specifically super helpful for us because they give us more sustainability, they help us to know that we can count on you to support us over time.

And it’s just really helpful as we’re working on building up our budget and figuring out how we’re going to sustain our work into 2026.

New donations are actually going to be matched.

So that means donations will be doubled thanks to the Disability Visibility Project.

They also helped us out with matching donations for end of year fundraiser last year.

And we’re just very grateful that they, specifically Alice Wong, who runs the Disability Visibility Project, is continuing to support The Sick Times and is just like a great colleague in the disability writing and advocacy space.

I’m also excited to say that we’re about halfway to our goal of new monthly donors.

So really, thank you to everybody who has signed up for that so far.

Miles: Special to this fundraiser, we are giving out cool dad hats that are a khaki color with the purple Sick Times logo on the front.

And we’re giving those out for donors who donate over $50 or donors who give $20 a month and sign up for that subscription.

And we’ll be sending those out later this fall.

And we’ll also be giving out pins for anyone who starts a monthly donation featuring our mascot, the Caladrius, and our tagline, “No denial, minimizing or gaslighting.”

We’re excited to get these out and just wanted to offer something for your incredible support.

Betsy: Perfect to wear out to your masked gatherings, your doctor’s appointments, your passive-aggressive attendance at family gatherings, you know, whatever, whatever you’re doing.

Miles: [laughs]

Betsy: Your journalism conferences, where you’re the only person in the room wearing a mask.

I know I will be wearing mine in that capacity in the coming, the coming months, you know, yeah. [laughs]

James: Yeah, you could do the same with our hat, but the pin is a little more subtle, maybe.

Thank you so much to everyone who supported or just shared our work or shared this fundraiser.

‘Cause even that little bit of sharing is super impactful and helps us a lot. We will link to the full announcement for our fundraiser in the transcript.

Outro (26:44)

And on that note, that’s all we have for you this episode.

You can stay up to date with our newsletter and coverage at thesicktimes.org.

[Instrumental theme song excerpt plays underneath the rest of the podcast]

Miles: We’ll continue reporting the information you need to better practice care.

Betsy: Solidarity with everyone still here. 

James: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website.

Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis. 

Our theme song for this episode is the Rude Mechanical Orchestra’s rendition of Which Side Are You On?, originally by Florence Reece. I’m James Salanga and I produced this episode. Our engagement editor is Heather Hogan. Our summer intern is Delfi Marchese. Sophie Dimitriou designed our podcast cover art. And Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times’ co-founders.

Thanks for listening.