letter blocks spell out the word Long COVID, with the O in COVID shaped like the coronavirus

DEADLINE: Wednesday, November 27, 2024 at 8:45 pm Pacific Time (11:45 pm Eastern Time). Open internationally.

DO THE SURVEY

Cochrane Canada and the McMaster GRADE Centre at McMaster University, scientifically and financially supported by the Public Health Agency of Canada (PHAC), are in the process of developing guidelines to prevent and treat Long COVID (“Post-COVID Condition”) in Canada.

They are releasing draft recommendations every month, with a brief period for public feedback. We have significant concerns with their draft recommendations for November 2024, and we encourage as many people as possible to submit comment.

Read below to find some of our points of concern, alongside references and further context. Feel free to draw from some or all of our comments (we’ve included the references in the body text for easier copy-pasting) – or review the info and come to your own conclusions!

You can also find other comments from organizations and subject matter experts here:

How to complete the survey:

  • Go to https://www.research.net/r/CAN-PCCRecommendationCommentPublic to do the survey.
  • Answers must be submitted before 8:45 pm Pacific / 11:45 pm Eastern on Wednesday, November 27, 2024.
  • Doing the complete survey may take 10-15 minutes, but you can skip questions, and it’s much faster with template answers!
  • You do not need to provide your name or email to fill out the survey. However, they will ask for some info like whether you are a healthcare worker, or whether you have Long COVID.
  • There is no way to save your survey progress to finish it later. If you anticipate needing more time to review the recommendations or compose your answers, you can preview the survey via this PDF, then submit your answers all at once when they’re done!

Our comments:

Content warning: potential mistreatment, psychologization, denial of care

Draft Research Recommendation #1: The CAN-PCC Collaborative suggests ketogenic diets in adults with acute COVID-19 infection to prevent post COVID-19 condition in research studies only (research recommendation). 

See PDF for full text, and link to their evidence table.

Increased prevalence of developing new conditions due to COVID-19 – some of which may emerge on a delay – may increase risks of clinicians having an incomplete picture of possible contraindications.

The primary reason we do not flag additional concerns around this topic, is because this recommendation is marked as applicable to research only. We find the quality of evidence low.

Draft Recommendation #2: The CAN-PCC Collaborative suggests exercise in adults with acute COVID-19 infection to prevent post COVID-19 condition (conditional recommendation, very low certainty in the evidence).

See PDF for full text, and link to their evidence table. Note that they have a remark stating, “For individuals where exercise worsens symptoms or there is suspicion for post-exertional malaise, exercise or rest recommendations should be made under the supervision and guidance of a health care professional.”

We have major concerns revolving around unacceptably high risks of harm – including a potential for this guidance to be misunderstood or misapplied. Specific issues include:

1. LACK OF SUPPORT FOR EFFECTIVENESS:

As mentioned, CAN-PCC finds “very low certainty” of evidence. We should note that a study has found habitual physical activity reduced odds of hospitalization, but not of Long COVID. (Glace, BW et al. The Journal of Sports Medicine and Physical Fitness, 01 Jul 2024, 64(7):685-693 https://doi.org/10.23736/s0022-4707.24.15516-8)

There is also consistent evidence that deconditioning is not the only explanation of reduced exercise capacity in Long COVID, especially among individuals who were not hospitalized (Durstenfeld MS, Sun K, Tahir P, et al. Use of Cardiopulmonary Exercise Testing to Evaluate Long COVID-19 Symptoms in Adults: A Systematic Review and Meta-analysis. JAMA Netw Open. 2022;5(10):e2236057. doi:10.1001/jamanetworkopen.2022.36057)

2. RISKS OF HARM:

As per the World Health Organization: “reports have found that early aerobic exercises may not be well tolerated and result in rapid desaturation in COVID-19 inpatients”; “oxygen desaturation on exertion may happen during the recovery phase…and is unrelated to the oxygen saturation at rest”; “Exertional desaturation warrants further investigation…before rehabilitation can be commenced safely. Commencing rehabilitation that increases oxygen demand, for example physical exercise training, in the presence of exertional desaturation or new cardiac impairment could precipitate an acute event.” (WHO. Clinical management of COVID-19: living guidance. 2023. https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2023.2)

Research also finds increased risk of bleeding, pulmonary embolism (BMJ: https://www.bmj.com/content/377/bmj-2021-069590), anomalous clotting (Cardiovascular Diabetology: https://cardiab.biomedcentral.com/articles/10.1186/s12933-021-01359-7), and cardiovascular events after COVID (Nature Medicine: https://www.nature.com/articles/s41591-022-01689-3).

There are findings as far back as 1976 that for post-viral illness, “it cannot be too strongly stressed that rest is imperative in the acute phase of the disease.” (Ramsay, M. Update (UK). 15th September 1976. ‘Benign Myalgic Encephalomyelitis or Epidemic Myasthenia’, p. 542) A more recent study found that with prolonged symptoms following COVID infection, 85.9% of participants (95% CI, 84.8% to 87.0%) experienced relapses that were primarily triggered by exercise, physical or mental activity, and stress. (Davis HE, Assaf GS, McCorkell L, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine. 2021;38:101019. doi:10.1016/j.eclinm.2021.101019) Serious symptoms can also emerge over time, making it harder to immediately identify conditions that may present a contraindication (see figure 5 of foregoing study).

And of course, an exercise recommendation is risky or contraindicated in the presence of Long COVID (see guidance from WHO, Long COVID Physio, ME Association UK https://meassociation.org.uk/2021/03/mea-statement-graded-exercise-therapy-is-not-a-safe-and-effective-treatment-for-me-cfs-or-long-covid/). One study of people with Long COVID noted that physical activity worsened the condition of 75% of patients, and less than 1% saw improvement (J Wright et al. The relationship between physical activity and Long COVID: a cross-sectional study. Int. J. Environ. Res. Public Health 2022, 19(9), 5093; https://doi.org/10.3390/ijerph19095093). Prior to attempting physical activity for rehabilitation in Long COVID, it is explicitly recommended to screen for post-exertional malaise (PEM); cardiac impairment; exertional oxygen desaturation; autonomic dysfunction and orthostatic intolerances. This includes ongoing monitoring. (World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. London, UK: World Physiotherapy; 2021. https://world.physio/sites/default/files/2021-07/Briefing-Paper-9-Long-Covid-FINAL-English-202107.pdf?logged_in=true)

We should also note that depending on the form of exercise, there could be a risk of illness spread while the patient is acutely sick and infectious.

3. PEM CONTRAINDICATION:

Cautions around doing exercise with post-exertional malaise (PEM) under “supervision…of a health care professional” are insufficient. Our specific concerns include:

3a. EVIDENCE OF HARM:

Exercise is often harmful and contraindicated for patients with Long COVID who have PEM or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS – a condition for which PEM is the hallmark symptom). Some references:

Appelman, B., Charlton, B.T., Goulding, R.P. et al. Muscle abnormalities worsen after post-exertional malaise in long COVID. Nat Commun 15, 17 (2024). https://doi.org/10.1038/s41467-023-44432-3

Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2

Heerdt, P. M., Shelley, B. & Singh, I. Impaired systemic oxygen extraction long after mild COVID-19: potential perioperative implications. Br. J. Anaesth. 128, e246–e249 (2022).)

NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE https://www.nice.org.uk/guidance/NG206 (2021).

 Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018;5(2):2055102918805187. Published 2018 Oct 8. doi:10.1177/2055102918805187

3b. WARNINGS AGAINST USE:

Multiple bodies including the World Health Organization warn against exercise as treatment in presence of PEM / PESE:

“Excluding PESE before commencing exercise therapy, and careful monitoring for PESE both during and after exercise, should be considered in adults with post COVID-19 condition” (WHO. Clinical management of COVID-19: living guidance. 2023. https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2023.2)

“Recommending someone who has PEM to gradually increase exercise or activity levels causes harm, physical and emotional, sometimes irreversible, and may accelerate the progression of the illness.” (ME Action & Patient-led Research Collaborative. Pacing and Management Guide for ME/CFS and Long COVID for Clinicians. https://www.meaction.net/wp-content/uploads/2023/02/Pacing-Guide-Clincians.FINAL2_.pdf)

“Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team” (NICE. Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management. NICE Guideline [NG206]. 29 October 2021. https://www.nice.org.uk/guidance/ng206)

Also see:

Treatment of ME/CFS | Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). CDC https://www.cdc.gov/me-cfs/treatment/index.html (2021)

Long COVID Physio. Exercise. Long COVID Physio https://longcovid.physio/exercise (2022)

3c. PREVALENCE OF RISK FACTORS:

The vast majority of Long COVID patients (~90%) develop PEM. See:

Davis HE, Assaf GS, McCorkell L, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine. 2021;38:101019. doi:10.1016/j.eclinm.2021.101019)

Décary S, Gaboury I, Poirier S, et al. Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. J Orthop Sports Phys Ther. 2021;51(5):197-200. doi:10.2519/jospt.2021.0106

3d. UNDER-RECOGNITION BY CLINICIANS:

We are concerned that clinician knowledge gaps around PEM or post-viral illness will result in exercise being recommended even in the presence of contraindications. As per the World Health Organization: “Red flags for safe rehabilitation may be unclear and depend on the clinical skills of the team and availability of diagnostic investigations.” (WHO. Clinical management of COVID-19: living guidance. 2023. https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2023.2)

We further note that only 1 in 8 Canadians with persistent symptoms who sought medical help, felt they received adequate care (Kuang S et al. Experiences of Canadians with long-term symptoms following COVID-19. Statistics Canada (2023) https://www150.statcan.gc.ca/n1/pub/75-006-x/2023001/article/00015-eng.htm)

Using literature for ME/CFS as a proxy for PEM (since PEM is the pathognomonic symptom of ME/CFS): an estimated 91% of cases go undiagnosed (Bateman, Lucinda et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clinic Proceedings, Volume 96, Issue 11, 2861 – 2878. DOI https://doi.org/10.1016/j.mayocp.2021.07.004). The majority of healthcare workers self-assess as having insufficient knowledge about ME/CFS (ME | FM Society of BC & Women’s Health Research Institute at BC Women’s. M.E. in BC: How the Healthcare System for M.E. impacts Clinicians and Patients. 2021. https://www.mefm.bc.ca/our-research). The illness is not adequately taught in many medical schools. (Peterson, MT et al. Coverage of CFS within U.S. Medical Schools. Universal Journal of Public Health Vol. 1(4), pp. 177 – 179 DOI: 10.13189/ujph.2013.010404) This suggests many clinicians could be insufficiently educated about PEM to recognize it.

While we appreciate that CAN-PCC recognizes the need for education around PEM, and mentions that a separate pacing resource is coming, we regard this exercise recommendation to be dangerous when released on its own.

3e. UNDER-RECOGNITION BY PATIENTS:

Additional risk is introduced by the fact that patients may be unfamiliar with PEM as well. As per the WHO, “Post-exertional symptom exacerbation may not be mentioned spontaneously by individuals, due to unfamiliarity with the concept” (World Health Organization. Clinical management of COVID-19: Living guideline, 15. September 15, 2022. Post-exertional symptom exacerbation. https://app.magicapp.org/#/guideline/j1WBYn/section/jOpQqB)

3f. REPEATING PAST MISTAKES:

Exercise therapy has a substantial record of harm for post-viral illness, with improper recommendations that have subsequently been amended or withdrawn. See:

Torjesen, I. NICE cautions against using graded exercise therapy for patients recovering from COVID-19. BMJ 2020;370:m2912 https://doi.org/10.1136/bmj.m2912

David Tuller, DrPH. Trial By Error: The CDC Drops CBT/GET. 2017. https://virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/

Workwell Foundation letter. Opposition to Graded Exercise Therapy for ME/CFS. https://workwellfoundation.org/wp-content/uploads/2019/07/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

Not only may these issues impact acceptability for patients, but they run the risk of worsening health outcomes. The difference in acceptability for clinicians versus patients was highlighted in your evidence table, but comments failed to capture some nuances: many clinicians may be unfamiliar with risks or contraindications around exercise in this patient population, or the fact that past exercise recommendations around ME/CFS or PEM have been withdrawn. This is highlighted by patient accounts of harmful contact and mistreatment within the healthcare system (ME | FM Society of BC & Women’s Health Research Institute at BC Women’s. M.E. in BC: How the Healthcare System for M.E. impacts Clinicians and Patients. 2021. https://www.mefm.bc.ca/our-research)

It should also be noted that some clinicians find exercise for post-acute COVID to be inappropriate. (Nebraska Medicine. How (and when)  to start exercising after COVID-19. https://www.nebraskamed.com/COVID/how-and-when-to-start-exercising-again-after-covid-19 2022)

3g. EQUITY CONCERNS:

Groups who are more likely to develop Long COVID or PEM (and thus be adversely affected by exercise) include women, racialized people, and LGBTQIA2S+ people among others. Meanwhile, children and minority language speakers may have more difficulty communicating difficulties with exercise, or symptom patterns indicative of PEM.

Those who don’t have family doctors may receive less ongoing medical supervision, meaning there would be a lack of safeguards providing the necessary “continuous monitoring” indicated for PEM, cardiac issues etc. (World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. London, UK: World Physiotherapy; 2021. https://world.physio/sites/default/files/2021-07/Briefing-Paper-9-Long-Covid-FINAL-English-202107.pdf?logged_in=true)

4. OUR RECOMMENDATION

Our strong suggestion is to retract or reverse this recommendation. Alternatively: CAN-PCC could pause this recommendation to (re)assess, perhaps after work on rest/pacing and exercise is completed? Our view is that without fulsome guidance around pacing, PEM, and acute risks such as cardiac events or oxygen desaturation, any standalone exercise recommendation is not only contrary to many existing recommendations, but runs an unacceptably high risk of harm.

Draft Recommendation #3:

1: The CAN-PCC Collaborative suggests against using chest x-rays in adults with suspected post COVID-19 condition and cardiopulmonary symptoms who were not hospitalized due to severe COVID-19 infection during the acute phase of their infection (conditional recommendation, very low certainty in the evidence). 

2: The CAN-PCC Collaborative suggests using chest x-ray tests in adults with suspected post COVID-19 condition and cardiopulmonary symptoms who were hospitalized due to severe COVID-19 infection during the acute phase of their infection (conditional recommendation, very low certainty in the evidence).

See PDF for full text, and link to their evidence table. Note they do remark that if clinical suspicion is high for a cardiopulmonary condition (e.g., pneumonia, pulmonary edema) a chest x-ray should be ordered.

We agree with providing chest X-rays for COVID survivors who were hospitalized. We are concerned by the suggestion to withhold chest x-ray for patients who were not previously hospitalized, when they present with cardiopulmonary symptoms.

As per the World Health Organization, “New cardiac impairment in post COVID-19 condition patients…has been reported in both previously hospitalized and non-hospitalized patients and warrants further investigation.” (WHO. Clinical management of COVID-19: living guidance. 2023. https://www.who.int/publications/i/item/WHO-2019-nCoV-clinical-2023.2)

A recent study indicates that regardless of initial disease severity, participants infected with the virus had double the risk for major cardiovascular events (Hilser, JR et al. COVID-19 Is a Coronary Artery Disease Risk Equivalent and Exhibits a Genetic Interaction With ABO Blood Type. Arteriosclerosis, Thrombosis, and Vascular Biology. 2024 Oct 8;44(11) https://doi.org/10.1161/ATVBAHA.124.321001) An analysis of more than 150,000 individuals one year after SARS-CoV-2 infection indicated a significantly increased risk of a variety of cardiovascular diseases, independent of the severity of initial COVID-19 presentation (Xie, Y., Xu, E., Bowe, B. & Al-Aly, Z. Long-term cardiovascular outcomes of COVID-19. Nat. Med. 28, 583–590 (2022). https://doi.org/10.1038/s41591-022-01689-3)

We would also like to flag a potential equity issue. Serious cardiac events are missed (or dismissed) more often in women. Given that Long COVID disproportionately affects the female sex, we are concerned about the decision to discourage testing that could identify cardiopulmonary issues, even in the presence of symptoms – particularly given the increased likelihood of these issues occurring in people with Long COVID.

Draft Recommendation #4: The CAN-PCC Collaborative suggests not ordering C-reactive protein in adults with suspected post COVID-19 condition (conditional recommendation, very low certainty in the evidence).

See PDF for full text, and link to their evidence table. Note they do remark that consideration may be given to testing individuals with symptoms of autoimmune disease or pericarditis.

We are wary of recommending against testing, when there is negligible cost and high acceptability in tandem with potential clinical value. We do however appreciate the suggestion to test when patients present with symptoms that may indicate autoimmune disease or pericarditis.

In particular, we are critical of the apparent contention (as per the evidence table) that it would improve health equity to withhold testing, out of concern not everyone may be able to access it, e.g. in some rural areas. The purpose of equity is not to reduce everyone to the lowest common denominator or the least amount of services. It is to uplift those who might otherwise fall through the cracks. Poor (and poorly-managed) health itself can drive inequitable outcomes.

While we acknowledge the panel’s note that CRP results are not, in and of themselves, typically the standard for diagnosis, we also emphasize that they can have value for investigation or clinical management. We would also remind CAN-PCC that the average length of time to receive an autoimmune disease diagnosis is over four years with four doctors (American Autoimmune Related Diseases Association: https://autoimmune.org/wp-content/uploads/2017/04/tips_for_auto_diagnosis.pdf), and that people with Long COVID can continue to develop new comorbidities over time, suggesting the need to be wary of under-investigation.

Draft Recommendation #5: The CAN-PCC Collaborative suggests the use of tools (i.e., Post-COVID-19 functional status scale, and EuroQol-5D [EQ-5D]) to evaluate adults with suspected post COVID-19 condition and dizziness and/or fatigue (conditional recommendation, very low certainty in the evidence).

See PDF for full text, and link to their evidence table.

In principle, we support the use of tools for evaluation. Potential concerns pertain to limitations of the specific tools cited (e.g. an absence of evaluating for symptoms like PEM); the need to account for limited patient insight; and concern that clinician bias could lead to misinterpretation or misuse (e.g. through overfocus on mental health symptoms – see comments about Recommendation #8 regarding CBT).

Draft Good Practice Statement #6: Caregivers of people with post COVID-19 condition should seek psychoeducational support for their well-being and caregiving capacity (ungraded good practice statement).

See PDF for full text, and link to their evidence table.

We agree with the need for caregivers to receive support.

One minor concern could pertain to the specific wording/framing, which puts the onus on the caregivers to seek support, rather than on healthcare providers to proactively offer or suggest supports.

Draft Recommendation #7: The CAN-PCC Collaborative suggests against the use of taurine supplementation for people with post COVID-19 condition (conditional recommendation, very low certainty in the evidence).

See PDF for full text, and link to their evidence table.

The evidence table notes an extremely low quality of evidence due to lack of direct evidence. The Canadian Institute of Health Research (CIHR) is currently funding a 6-month clinical trial from University of Alberta to investigate taurine supplementation in Long COVID (https://thegatewayonline.ca/2024/10/u-of-a-clinical-trial-to-test-taurine-as-treatment-for-long-covid-19/). We suggest waiting until results of the trial are released to make a recommendation – or at minimum, flagging this to be updated once further data is available.

Draft Recommendation #8: In individuals with post COVID-19 condition and post-exertional malaise (PEM), the CAN-PCC Collaborative suggests cognitive behavioral therapy in addition to pacing (conditional recommendation, very low certainty in the evidence).

See PDF for full text, and link to their evidence table. They do remark that “The therapy should be tailored for each individual… to work within each individual’s energy limit”.

While cognitive behavioural therapy (CBT) is a validated therapy for certain mental health conditions – and we appreciate the decision to only consider it in tandem with pacing – we have concerns around a CBT recommendation in the context of PEM and post-viral illness. In the absence of direct evidence, the evidence table appears to focus on CBT usage in ME/CFS. There is a substantial history of CBT being misused in ME/CFS, and weaponized under a cognitive-behavioural framework that ignores physical realities (Geraghty, K et al. The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model. Health Psychol Open. 2019 Apr 23;6(1):2055102919838907. doi: 10.1177/2055102919838907).

We should note that while we support patients being offered care for both their mental and physical health needs, we are already receiving anecdotal accounts of CBT being misused in harmful and stigmatizing ways for Long COVID patients. Broader concerns are as follows:

1. FLAWS IN SUPPORTING EVIDENCE

Many of the ME/CFS studies in the evidence table selected patients using outdated criteria (like Oxford, which notably does not require PEM). Due to the weaknesses of the Oxford criteria, The National Institutes of Health recommended retiring their use in the 2015 P2P report (National Institutes of Health (US) (December 9, 2014), NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf)

The evidence table also cites the PACE trial (White, PD et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet; Mar 5 2011). We’d like to flag that this study has been criticized by a broad array of ME/CFS experts for “unacceptable methodological lapses” (Tuller, David (July 10, 2018). Trial By Error: Yet Another Appeal to The Lancet, With More On Board. Virology blog. https://virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/). These issues were emphasized upon reanalysis of the data (Matthees, A. et al. A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data. Wednesday 21 September 2016. https://www.virology.ws/wp-content/uploads/2016/09/preliminary-analysis.pdf), and became the topic of a New York Times exposé (Rehmeyer, Julie and Tuller, David. Getting It Wrong on Chronic Fatigue Syndrome. New York Times. March 18, 2017. https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html)

The evidence table cites the work of both Michael Sharpe and Simon Wessely, who are considered by many to be noted proponents of a discredited model of ME/CFS positing it to be of psychological origin (Monbiot, George. The Guardian. ‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal. 13 Mar 2024. https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services). Likewise, the evidence table cites a systematic review of CBT for mood and anxiety disorders (pathological health anxiety), which does not have any direct relevance to PEM – and may give the mistaken impression to either patients or clinicians that you view Long COVID as psychogenic.

The evidence table mentions that “CBT is generally available in most settings across Canada”. However, we would note that even in guidelines that have cautiously permitted CBT as an option for post-viral illness, it is emphasized that “CBT should only be delivered by a healthcare professional with appropriate training and experience in CBT for ME/CFS, and under the clinical supervision of someone with expertise in CBT for ME/CFS.” (NICE. Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management. NICE Guideline [NG206]. 29 October 2021. https://www.nice.org.uk/guidance/ng206)

2. CRITICISM AND CONTRAINDICATIONS

Current Long COVID research suggests CBT is contraindicated in the presence of PEM (Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2).

The US CDC withdrew their recommendation to use CBT for ME/CFS in 2017 (Tuller, David (July 10, 2017). Trial By Error: The CDC Drops CBT/GET. Virology Blog. http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/).

There are numerous criticisms and reports of harm when CBT is used in post-viral illness or in the presence of PEM. The largest independent patient survey of patient experiences of CBT and GET found ME/CFS patients undergoing CBT for their illness were almost twice as likely to have their mental health deteriorate than improve as a result of the course. (Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS) (February 27, 2019). Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes. FINAL REPORT. Oxford Brookes University. https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf.)

3. RISK OF FURTHER HARM

We appreciate the panel mentioning that some patients could interpret offering CBT as psychologizing their medical condition. We are concerned that in the absence of stronger clarification, there is a very real risk some clinicians will interpret this recommendation in this light as well. This is particularly true given clinician knowledge gaps around post-viral illness, and the historic associations of CBT with the discredited “psychosocial” theory of ME/CFS. (The US CDC found it necessary to clarify that “ME/CFS is a biological illness, not a psychologic disorder. Patients are neither malingering nor seeking secondary gain.” (US CDC. Clinical Overview of ME/CFS. May 10, 2024. https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html))

We cannot overstate the serious risk of harm from (even inadvertently) suggesting that physical illness symptoms are psychogenic. Apart from potentially contributing to clinician bias or inappropriate care, a study of ME/CFS in Switzerland found that not only had the majority of patients faced stigma (68.5%), but that the most powerful factor contributing to suicidality in patients (89.5%) was being told their disease was psychosomatic. (König RS et al. Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study. Heliyon, Volume 10, Issue 5, 2024. DOI: https://doi.org/10.1016/j.heliyon.2024.e27031)

Draft Research Recommendation #9: The CAN-PCC Collaborative suggests in contexts where specialized services are available or being (re)introduced, these programs undergo formal evaluation by measuring their impact on key outcomes, costs and other considerations (research recommendation).

See PDF for full text, and link to their evidence table.

We support evaluating programs for key outcomes.

Potential concerns could revolve around 1) ensuring that these evaluations are used to improve service offerings and patient support, not to decrease or cut them, and 2) ensuring that specialized programs are evaluated not just on their overall outcomes, but with attention to the specific factors that contribute to these outcomes. (For example: whether there are program-specific weaknesses or opportunities for improvement.)

We also strongly recommend ensuring sufficient patient input, and developing evaluation metrics in collaboration with a diverse array of stakeholders including those with lived experience.

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