Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner
Key points you should know:
- The McMaster GRADE Centre and Cochrane Canada developed more than 100 recommendations for Long COVID. However, experts say some of these guidelines could harm people with Long COVID.
- Some recommend controversial and scientifically unsupported therapies for the disease: exercise and cognitive behavioral therapy. These treatments mirror harmful and debunked recommendations for myalgic encephalomyelitis. They also contradict major guidelines.
- The majority of pediatric guideline developers came from the same children’s hospital that parents say has psychologized their children’s symptoms. And one committee member has an inconsistently disclosed conflict of interest.
- Professor emeritus Paul Garner attempted to influence the advisory committee, according to emails obtained through a public information access request.
- The organizations provided only one week for public comments on the recommendations. Many people with Long COVID stopped responding because they felt their voices were not being heard.
Before she got sick, Adriana Patiño was a competitive swimmer. She caught SARS-CoV-2 in 2020 and developed Long COVID, but she decided to keep swimming.
“As an athlete, I am always used to needing to push through everything,” Patiño said. “I definitely think that contributed to my Long COVID getting worse.“
Now, as leader of a patient advocacy organization called Long COVID Canada Collaborative, she is among many patients and researchers pushing back on the newly released Canadian Guidelines for Post-COVID Condition (CAN-PCC). One guideline recommends exercise for people with an acute infection to prevent Long COVID — which isn’t supported by any evidence, and many people with the disease, including Patiño, say it actually increases the risk.
“That’s when it tells you they’re literally not listening to the patients or the research,” she told The Sick Times.
To develop the CAN-PCC guidelines, McMaster University’s GRADE Centre collaborated with Cochrane Canada, an arm of the Cochrane Collaboration. Many people within the Long COVID and myalgic encephalomyelitis (ME) communities are familiar with the Cochrane Collaboration: in 2019, it published a review recommending exercise and cognitive behavioral therapy (CBT), a type of psychotherapy that helps people change negative thought patterns and behaviors, for ME despite legitimate concerns with the quality of the evidence behind the recommendation. Earlier this year, Cochrane abandoned its effort to write a new review.
The CAN-PCC guidelines provide more than 100 recommendations on Long COVID, organized across six categories: prevention; testing, identification, and diagnosis; clinical and non-clinical interventions; neurological and psychiatric topics; pediatric and adolescent topics; and health systems and social support. Teams of researchers, each of which included at least one patient representative, reviewed scientific papers to make the guidelines.
But some of the guidelines could harm patients, according to researchers, patients, and healthcare practitioners who spoke with The Sick Times. They called some guidelines “unclear,” “confusing,” and “deeply concerning.”
These recommendations mirror potentially harmful treatments promoted by Cochrane’s ME review. They also go against guidelines about managing ME from the U.S. Centers for Disease Control and Prevention (CDC) and U.K. National Institute for Health and Care Excellence (NICE).
With slight reframing, the recommended treatments “remain the same as what [have] been historically given for ME,” Claire Higham, who runs the group Long COVID Advocacy in the U.K., wrote to The Sick Times. “Without external, objective monitoring to prevent PEM (which doesn’t accessibly exist), [the guidelines are] unethical and place patients in danger.”
The problem with exercise and CBT guidelines
CAN-PCC includes three guidelines recommending exercise and CBT for people with Long COVID, all which experts and advocates consider dangerous. All three are labeled as “conditional,” meaning they are based on “very low certainty” evidence.
The first suggests exercise as an acute COVID-19 treatment for adults who don’t currently have Long COVID “to prevent post COVID-19 condition.”
While some individuals likely have a higher risk of developing Long COVID, there is still no surefire way for doctors to know whether their patient will develop it at the acute infection stage. The recommendation is based on 12 studies that examined exercise shortly after infection — none of which actually measured symptoms of Long COVID, let alone assessed whether exercise prevents the disease.
The recommendation seems “arbitrary” given the lack of relevant evidence, said Hannah Wei, the co-founder of the Patient-Led Research Collaborative.*
Higham agreed, writing: “We have seen time and time again people developing Long COVID from exercising with infection.”
The second recommendation suggests exercise as a “clinical intervention” for people with Long COVID who don’t have PEM.
More than half of people with Long COVID develop PEM, according to a 2024 review paper in General Hospital Psychiatry. But most healthcare providers have no idea what PEM is or how to assess it. The researchers conducting the studies that were included as evidence for this guideline didn’t properly assess PEM either.
While the guideline is labeled as “very low certainty,” “I’d even downgrade it more,” Todd Davenport, a professor of physical therapy at the University of the Pacific who was not involved in the development of these guidelines, told The Sick Times.
The third guideline recommends researchers study whether exercise can help those with Long COVID who have PEM, again based on very low-certainty evidence.
This runs counter to many people’s lived experiences as well as Long COVID and ME guidelines from numerous organizations, including NICE, the CDC, the World Health Organization, and Long COVID Physio. Furthermore, recent studies have demonstrated PEM is not caused by “muscle deconditioning.
“We have systems-level abnormalities and cellular abnormalities related to metabolic deficits [in PEM],” said Davenport. “It feels like we’re going back and encouraging people to ask and answer the same research questions over and over again.”
The Sick Times identified inconsistencies with a conflict of interest around one researcher, Dr. Kieran Quinn, who both co-chaired the team that helped review and make recommendations for drug and non-drug interventions for Long COVID and served on the guideline development group, which made the “final decisions on the recommendations.” Quinn is also an advisor to Cornerstone Physiotherapy, a physical therapy chain with eight locations in Toronto, as a member of their “Long COVID-19 rehabilitation program advisory committee.”
While this role is disclosed as a low-level conflict of interest for his role on the drug and non-drug interventions team, Quinn is listed as having no conflicts of interest in his role on the guideline development group.
A CAN-PCC spokesperson told The Sick TImes that the “decision regarding the relevance and seriousness and how to manage an interest was made by AWMF [a third-party determining conflicts of interest].” The third party judged that the “low conflict of interest” applied only for his role on the drug and non-drug intervention guideline team.
In an email, Quinn said that he is not a paid consultant to Cornerstone Physiotherapy and serves in an advisory role. “I simply want to help those living with Long COVID and believe in [the physical therapy chain’s] approach to supervised rehabilitation, for which there is recent evidence to support it,” Quinn wrote, referencing a 2024 systematic review that was criticized for extrapolating evidence from one study of hospitalized patients to suggest mental health interventions and therapy work for all patients with Long COVID.
Along with the exercise guidelines, the CAN-PCC guidelines provide a conditional recommendation based on low-certainty evidence to use CBT for people with Long COVID with PEM alongside pacing, with the goal of “providing mental health support.”
Higham is skeptical. Although the wording suggests CBT is meant to be supportive as one way to better cope with the disease, she is concerned it would be used as a primary treatment for Long COVID instead.
Davenport acknowledges the importance of mental health support for people living with chronic illness but isn’t optimistic about this recommendation. CBT has a “checkered history” in which health providers use it to “encourage people to deny their signs and symptoms,” he said.
The CAN-PCC guidelines also may not provide enough information to healthcare providers to support them in screening for PEM in clinical settings, according to Davenport and Amy Mooney, an occupational therapist who works with people who have ME and other chronic illnesses. While one guideline recommends using the DePaul Symptom Questionnaire–Post-Exertional Malaise to identify PEM, clinicians should in fact use it alongside other screening tools to ensure patients get the right diagnoses, they said.
“I think that there are other tools that can be used and others that can be developed that look at function and how people respond to exertion,” said Mooney.
A spokesperson for the CAN-PCC told The Sick Times that the recommendations reflect “optimal practices in guideline development” and “the input of people who will be affected” by or use the recommendations.
CBT has a “checkered history” in which health providers use it to “encourage people to deny their signs and symptoms.”
Todd Davenport, University of the Pacific
Parents push back on pediatric guidelines
Parents of children with Long COVID who spoke with The Sick Times had concerns over CAN-PCC’s pediatric guidelines, which they said could lead to more poor care, like that their children had received from doctors who treated their symptoms as psychological.
Several researchers who designed the pediatric guidelines are affiliated with the Hospital for Sick Children in Toronto, or SickKids. It’s one of the largest pediatric hospitals in Canada and has a notorious reputation among parents of kids with Long COVID. According to parents who spoke with The Sick Times, doctors often referred children to psychiatric care for what they described as physical symptoms of Long COVID. Many parents were concerned to speak on the record because they feared retaliation.
Nandini Raj, a parent of a child with Long COVID, has been outspoken about her criticisms of the CAN-PCC pediatric recommendations. Late last year, she sent a letter on behalf of a group of 20 parents and clinicians to the CAN-PCC leadership team with their concerns.
Of the 13 members on the Pediatric & Adolescent Guideline Group, seven are affiliated with the Hospital for Sick Children, and “have a reputation in the community for gaslighting children and adolescents living with LC/PCC,” Raj and her fellow letter-writers wrote. “This recommendation reinforces existing barriers that our children experience in doctor’s offices across Canada. Specifically, that our children’s symptoms are ‘all in their head.’”
The letter raised concerns about a proposed recommendation that would suggest screening for mental health conditions in children with Long COVID. While this recommendation didn’t make the final cut, CAN-PCC released a new set of proposed pediatric guidelines for feedback on June 9 — and those guidelines do recommend exercise for Long COVID, noting that “special consideration” should be taken for kids with PEM.
A CAN-PCC spokesperson told The Sick Times over email that they issued a public call for participation for researchers, healthcare professionals, patients, and caregivers. “SickKids is among the most reputable pediatric hospitals around the globe and logically there were several participants from SickKids,” they wrote.
“This recommendation reinforces existing barriers that our children experience in doctor’s offices across Canada. Specifically, that our children’s symptoms are ‘all in their head.’”
Letter from concerned parents and clinicians about CAN-PCC pediatric guidelines
How Paul Garner attempted to influence the guideline development
Paul Garner, a professor emeritus at the Liverpool School of Tropical Medicine, sent multiple emails to the CAN-PCC guideline developers attempting to influence the guidelines and shut down public discussion.
Garner, who said in 2021 he recovered from Long COVID, has written multiple articles and perspectives in prominent British scientific journals, including The BMJ and The Lancet. He wrote that the changes in ME guidelines by NICE, which no longer recommend exercise or CBT, were driven by “activist corruption.” In a recent article, he suggested people with severe ME needed “hope.”
He also recommended installing clinicians with experience helping people with “fatigue states” and “psychosomatic conditions” as well as “recovered” patients onto guideline panels, according to emails The Sick Times obtained through a public records request.
In Garner’s emails, he asserts (contrary to numerous scientific papers and most reliable experts in the field) that the “belief[s] that the [Long COVID or ME] illness is entirely biomedical and that exertion does you harm” actually contribute to symptoms and make patients worse.
Garner told The Sick Times over email that he recommended retraining programs for consideration because he “was concerned that they would not be considered impartially.”
Many of the emails, and even Garner’s email signature, complained about people with Long COVID being “activists.” While it doesn’t appear that the comments made in the emails explicitly affected guideline development, it is unclear whether Garner’s connection to CAN-PCC may have led to more favorable evidence assessments for CBT and exercise.
The CAN-PCC team included Garner on an invitation to a virtual kickoff meeting for the guidelines in March 2023. Garner had previously collaborated with Holger Schunemann, a McMaster professor and co-lead of CAN-PCC; the two researchers are coauthors on multiple publications. In response, Garner encouraged the organizers to moderate the public chat of the kickoff meeting and censor questions from the public.
“You probably realise this, but just to say that you should we [sic] aware contents on the call and even recordings of parts of it will appear in activist blogs, twitter etc, with commentaries. There have also been issues with questions in the chat-you may wish to moderate these rather than allow every question to get posted to everyone,” he wrote on March 25, 2023.
Garner did not receive an email response to his suggestion.
“It’s puzzling how mind-body proponents can complain about ME/CFS activism, and yet that term precisely describes what they’re doing over email to leaders and in the chat during meetings,” said Davenport.
On April 2, 2023, Garner sent another email revealing that his friend joined a prominent patient group. “The Canada Facebook group for [Long COVID] is run by someone with ME/CFS and according to a friend who joined to suss out for you folk, she says it is ‘dire,’” he wrote.
The CAN-PCC guidelines team again did not respond to the email or the information that Garner’s friends had joined a patient group — which was run by Patiño.
“We are deeply troubled that Dr. Garner may have infiltrated our private patient support group, only to judge and criticize what patients say in their most vulnerable moments,” Patiño and the other five administrators of the group that was infiltrated wrote to The Sick Times. “We do not promote a narrative; we simply give patients space to freely express how they are feeling.”
“We urge Dr. Garner and his colleagues to respect patients’ privacy and refrain from weaponizing our most vulnerable expressions of emotion against us,” they wrote.
Garner, who has been removed from other Long COVID patient support groups before, responded to The Sick Times over email that the groups are “totally biased” against the psychosocial approach and “exclude information that could help people recover.” He shared that he had been kicked out of another Canadian Long COVID group for sharing a video explaining PEM from a psychological approach.
“On several occasions with several groups, we have been kicked out when trying to post messages about research on psychosocial approaches to recovery,” Garner wrote. “Most of the groups are a nightmare in terms of keeping patients fixed on their symptoms, fixed on a biomedical cause, fixed on pacing, fixed on excluding anything about psychosomatic approaches.”
Sabrina Poirier, a patient-researcher and advocate, told The Sick Times that Garner’s comments about patient groups are “incredibly privileged, audacious, and out of touch with the science and lived experience of Long COVID or ME.”
“Many of these online groups have saved lives, like mine, because they are often the only supports we can access,” she added.
Garner told The Sick Times that the CAN-PCC guidelines were “problematic,” noting that the guidelines exclude biopsychosocial approaches that “could help people recover.” His full statement to The Sick Times is available here.
After multiple additional emails in the same thread that received no response, the other co-lead of the CAN-PCC, Robby Nieuwlaat, sent an internal email to the administrator indicating that Schunemann would handle communications with Garner. However, no such emails were disclosed.
The public records request was inclusive of records from January 1, 2023, to January 1, 2025. Both Garner and a CAN-PCC spokesperson told The Sick Times that he did not have any further conversations with Schunemann. The CAN-PCC spokesperson also wrote that Garner was not part of the guideline development and did not influence the decision or recommendations.
Garner’s comments about patient groups are “incredibly privileged, audacious, and out of touch with the science and lived experience of Long COVID or ME.”
Sabrina Poirier, patient-researcher and advocate
From guidelines to practice
The CAN-PCC guidelines could influence rehabilitation programs and patient care in Canada — potentially leading to worse baselines for some Canadians with Long COVID.
“I would say probably over 95% of healthcare professionals have no idea how to diagnose and manage Long COVID or complex chronic disease,” said Funmi Okunola, a family doctor in Vancouver who founded Long COVID the Answers to help train Canadian physicians and inform them about Long COVID.
Okunola doesn’t think the guidelines are useful, calling them “confusing” and “contradictory.” They may not be easy to navigate for general physicians who often have just 10 minutes with their patients, she added.
Mooney and Davenport raised concerns that some doctors might misapply the research guideline in their clinical practice, offering exercise to treat patients with PEM. “There is a risk for that misinterpretation that this might be appropriate for a clinical setting,” Mooney said.
In Davenport’s experience, the language in guidelines should reflect the level of evidence for the recommendations. When the very low- and very high-certainty guidelines are worded the same, “it may be misleading” and difficult for healthcare professionals to figure out which ones to follow.
Other guidelines use language like “clinicians may” and “clinicians may not” for clarity.
“We have seen programs where patients are recommended to go to rehab centers for graded exercise, cognitive behavioral therapy–type programs,” said Mooney. “We have many, many, many, many years of stories from patients saying, ‘I was permanently damaged.’”
“We have many, many, many, many years of stories from patients saying, ‘I was permanently damaged’ [from exercise and CBT].”
Amy Mooney, occupational therapist specializing in chronic illness
While CAN-PCC provided a draft of each set of guidelines to the public for feedback prior to finalizing it, the public was given only seven days to respond — not enough time, according to researchers, patient advocates, and healthcare practitioners who spoke with The Sick Times.
“It’s been really frustrating,” said Patiño. While people were initially engaged, after a couple of months, these advocates felt their feedback was “not being listened to.” As a result, she said there was a drop-off in the number of patients providing comments.
“The large number of responses we received, which we appreciated and carefully evaluated with the entire guideline development group, speaks against the claim that the time was too short,” a spokesperson for the CAN-PCC told The Sick Times over email.
Patiño had organized people with Long COVID to fill out surveys in November responding to proposed guidelines and, in collaboration with the Canadian COVID Society, wrote a response letter to the CAN-PCC. But to have greater impact, she said there needs to be more participation — not just from patients, but also from caregivers and clinicians.
“This is the time to get together as patients and people with lived experience to stop or to recall those guidelines that will cause harm,” said Patiño.
Interested readers in Canada may join the Long COVID Canada Collaborative support group, co-led by Adriana Patiño, on Facebook. For Canadian parents and caregivers interested in advocacy for children with Long COVID, email Nandini Raj at nandini@childrenslongcovidnetwork.com.
Simon Spichak is a Toronto-based science and health writer with a MSc in neuroscience. His work has been published in Being Patient, The Guardian’s Scientific Observer, The New York Times, The Daily Beast, Proto.Life, and other outlets. He is the founder of a low-cost online therapy clinic for students called Resolvve and runs a newsletter about underreported health and disability issues in Canada.
Simon will continue to report on the pervasiveness of exercise and CBT in Long COVID and ME spaces as a contributing writer at The Sick Times. To send him secure tips, reach out on Signal at simonspichak.64.
*Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
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11 responses
[…] but they recommend cognitive behavioral therapy (CBT) as a treatment for the disease, a move that experts and patient advocates have […]
[…] levels, but has been shown to worsen symptoms. CBT involves changing distressing thoughts. Its use in treating ME and Long COVID reflects the premise that physical symptoms are either a direct manifestation of maladaptive […]
[…] pointed out that the greater text contains claims minimizing the harms of graded exercise therapy, cognitive behavioral therapy, and functional neurological disorder on people with IACCs, as well as minimizing the ongoing […]
[…] The DSQ survey developed by Jason is one of the most popular methods for assessing PEM. But it is intended to be used as a screening tool for PEM rather than a diagnostic, and without confirmation from a healthcare practitioner, it leads to a lot of false positives. […]
[…] enroll 400 participants, who will also complete surveys about their symptoms. Mindfulness has been heavily criticized as a treatment for Long COVID by leading researchers and people with the disease. While it can help reduce stress, […]
[…] Kara developed ME as a young child (though would not be diagnosed for many years) and by the age of 16 could no longer walk. Against considerable odds, she managed to attend university in a wheelchair, but after graduating, she experienced rapid deterioration. Her decline was accelerated by inappropriate medical treatment, including graded exercise therapy. […]
[…] Kara developed ME as a young child (though would not be diagnosed for many years) and by the age of 16 could no longer walk. Against considerable odds, she managed to attend university in a wheelchair, but after graduating, she experienced rapid deterioration. Her decline was accelerated by inappropriate medical treatment, including graded exercise therapy. […]
[…] The Sick Times: Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning” […]
[…] behavioral therapy (CBT), a type of talk therapy, is controversial as a treatment for ME and Long COVID. Treatment guidelines in the U.K. have recommended CBT in the past, bolstered […]
[…] Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning” Sick Times […]
[…] Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning” Sick Times […]