Re: Health outcomes of patients in the Complex Chronic Diseases Program. Authors reply

We thank the BCMJ for sharing the letter from Cleave and colleagues[1] about our article and the authors for their perspective on the needs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia patients in BC. We concur with their assessment that patients with complex chronic diseases have often been “stigmatized and profoundly underserved by our health care system” and that they deserve appropriate care. We thank them for recognizing the dedication of the only provincial reference service for these patients.

However, our team disagrees with the assessment that the conclusion of our article indicates that ME/CFS and fibromyalgia are “too severe and persistent to respond to treatment.” Instead, the article concludes that there were some improvements in mental and physical health indicators and the severity of ME/CFS, which were nevertheless limited.[2] The intended conclusion was to point to the chronic and individualized nature of these diseases and the difficulty of treating them, not least due to the current absence of evidence-based curative treatments for ME/CFS,[3] not that they are untreatable. The Complex Chronic Diseases Program (CCDP) prioritizes the biological as well as the psychosocial health of patients and has a full team of interprofessionals, including mental and physical health specialists. While overall improvements were small, it is significant that mental health scores of patients with complex chronic diseases improved during the COVID-19 pandemic, a period when the general population experienced a particularly high risk of developing or worsening mental health problems.

In our article, we also emphasize the importance of “earlier diagnosis and intervention, particularly at the primary care level.” This is particularly important having in mind that most patients presented late to the specialized service, years after developing the disease. We have previously reported on the importance of early diagnosis and management as key to improving the prognosis of those with ME/CFS.[4] This is true for chronic diseases in general, for which treatment becomes increasingly more challenging in later disease stages and disease complications limit the impact of treatment.[4] We offer a path to better outcomes, based on the “integration of primary care, community providers, and specialist expertise,” and highlight the importance of “continuing education and research.” Education of health professionals, in particular those in primary care, would be key to early diagnosis and management.

Regarding the authors’ claim that childhood trauma can explain the disease etiology in part or in full, the evidence of childhood trauma as a risk factor for complex chronic diseases is rather weak and nonspecific. Studies suggesting this relationship have been of poor quality (as reported by Häuser and colleagues’ meta-analysis, cited by Cleave and colleagues in their letter).[5] That study specifically indicated that “study quality was mostly poor,” confounding the findings.[5]

The study by Gardoki-Souto and colleagues, also mentioned in the letter, is a cross-sectional study, and thus also inappropriate for determining causality.[6] Moreover, a high proportion of patients in the study were recruited from mental health services, which generates significant selection bias in the sample; the potential for bias is further increased by the absence of controls.

Trauma is not uncommon and should be considered in any patient when assessed at health services. This should be addressed and managed accordingly. The CCDP has been a trauma-informed service since its inception. This means we fully consider trauma as possibly present in any patient who reaches the program and tailor care with respect and sensitivity accordingly. This does not in any way suggest, let alone demonstrate, causality between trauma and complex chronic diseases. Suggesting childhood trauma as an explanation for complex chronic diseases is very problematic, is not patient centred, and does a disservice to this often-neglected population by psychologizing physical health problems.

The treatment of complex chronic diseases is indeed longitudinal and, as such, includes multiple contact points with the interprofessional team. We have also worked together with primary care to best serve the continuing needs of the patient population. Indeed, we need to continue to fight the stigmatization of this patient population, including that observed within the health sector,[7] which has more than often hampered the well-being and management of this patient population. Good science and health practice are important steps.
—Luis Nacul, MD
Clinical Associate Professor, Department of Family Practice, UBC

Note: The study team is no longer connected with the CCDP. The statements in this letter speak only for the program in the context of the original article.

This letter was submitted in response to “Re: Health outcomes of patients in the Complex Chronic Diseases Program.”

hidden

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

References

1.    Cleave S, Gilks T, Rodin I. Re: Health outcomes of patients in the Complex Chronic Diseases Program. BCMJ 2025;67:310.

2.    Meagher E, Magel T, Boulter T, et al. Health outcomes of patients in the Complex Chronic Diseases Program. BCMJ 2025;67:174-181.

3.    National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: Diagnosis and management (NICE guideline NG206). Published 29 October 2021. Accessed 15 October 2025. www.nice.org.uk/guidance/ng206/resources.

4.    O’Boyle S, Nacul L, Nacul FE, et al. A natural history of disease framework for improving the prevention, management, and research on post-viral fatigue syndrome and other forms of myalgic encephalomyelitis/chronic fatigue syndrome. Front Med (Lausanne) 2022;8:688159. https://doi.org/10.3389/fmed.2021.688159.

5.    Häuser W, Kosseva M, Üceyler N, et al. Emotional, physical, and sexual abuse in fibromyalgia syndrome: A systematic review with meta-analysis. Arthritis Care Res (Hoboken) 2011;63:808-820. https://doi.org/10.1002/acr.20328.

6.    Gardoki-Souto I, Redolar-Ripoll D, Fontana M, et al. Prevalence and characterization of psychological trauma in patients with fibromyalgia: A cross-sectional study. Pain Res Manag 2022:2022:2114451. https://doi.org/10.1155/2022/2114451.

7.    Myalgic Encephalomyelitis & Fibromyalgia Society of BC. ME in British Columbia: How the healthcare system for ME impacts clinicians and patients. Updated 16 July 2022. Accessed 15 October 2025. www.mefm.bc.ca/post/me-in-bc-how-the-healthcare-system-for-me-impacts-clinicians-and-patients.