Canada – American ME and CFS Society

Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life

Abstract:

Background: There is no accurate data on the epidemiology of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in Canada. The aims of the study were to describe the epidemiology of confirmed ME/CFS cases and their health-related quality of life (HRQoL).

Methods: This is a cross-sectional study with British Columbia Generations Project (BCGP) participants who self-reported having CFS and population-based controls with no fatiguing illness. Participants completed the Symptoms Assessment Questionnaire, RAND 36-item Health Survey, and Phenotyping Questionnaire Short-form. These assessments enabled the identification and characterization of confirmed cases of ME/CFS. Those with self-reported diagnoses who did not meet study diagnosis of ME/CFS were subcategorized as non-ME/CFS cases.

Results: We included 187 participants, 45.5% (n=85) self-reported cases and 54.5% (n=102) controls; 34% (n=29) of those who self-reported ME/CFS fulfilled diagnostic criteria for ME/CFS. The population prevalence rates were 1.1% and 0.4% for self-reported and confirmed ME/CFS cases respectively. Participants displayed significantly lower scores in all eight SF-36 domains compared to the other groups. Mental component scores were similar between ME/CFS and non-ME/CFS groups. The main risk factor for low HRQoL scores was fatigue severity (β = -0.6, p<0.001 for physical health; β = -0.7, p<0.001 for mental health).

Conclusions: The majority of self-reported cases do not meet diagnostic criteria for ME/CFS, suggesting that self-reported CFS may not be a reliable indicator for a true ME/CFS diagnosis. HRQoL indicators were consistently lower in ME/CFS and non-ME/CFS cases compared to controls, with ME/CFS cases having lower scores in most domains. Having higher symptom severity scores and perceived poorer health were the significant affecting factors of lower HRQoL. Although self-report can be used as screening to identify cases in populations, we suggest studies of ME/CFS should include appropriate medically confirmed clinical diagnosis for validity. Further large-scale population-based studies with simultaneous medical assessment are suggested to further characterize validity parameters of self-reported diagnosis.

Source:Enkhzaya Chuluunbaatar-Lussier, Melody Tsai, Travis Boulter, Carola Munoz, Kathleen Kerr, Luis Nacul. Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported Chronic Fatigue Syndrome in British Columbia, Canada, and their health-related quality of life. medRxiv 2024.05.16.24307437; doi: https://doi.org/10.1101/2024.05.16.24307437 https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1 (Full study available as PDF file)

“None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVI

Abstract:

Background: Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs.

Methods: Our study was informed by the Levesque et al.’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed.

Results: Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants.

Conclusion: With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

Source: Brehon K, Miciak M, Hung P, Chen SP, Perreault K, Hudon A, Wieler M, Hunter S, Hoddinott L, Hall M, Churchill K, Brown DA, Brown CA, Bostick G, Skolnik K, Lam G, Weatherald J, Gross DP. “None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID. BMC Health Serv Res. 2023 Dec 12;23(1):1396. doi: 10.1186/s12913-023-10288-y. PMID: 38087299; PMCID: PMC10714615. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10714615/ (Full text)

Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review

Abstract:

Background: Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome or ME/CFS) is a debilitating, complex, multi-system illness. Developing a comprehensive understanding of the multiple and interconnected barriers to optimal care will help advance strategies and care models to improve quality of life for people living with ME in Canada.

Objectives: To: (1) identify and systematically map the available evidence; (2) investigate the design and conduct of research; (3) identify and categorize key characteristics; and (4) identify and analyze knowledge gaps related to healthcare system barriers for people living with ME in Canada.

Methods: The protocol was preregistered in July 2022. Peer-reviewed and grey literature was searched, and patient partners retrieved additional records. Eligible records were Canadian, included people with ME/CFS and included data or synthesis relevant to healthcare system barriers.

Results: In total, 1821 records were identified, 406 were reviewed in full, and 21 were included. Healthcare system barriers arose from an underlying lack of consensus and research on ME and ME care; the impact of long-standing stigma, disbelief, and sexism; inadequate or inconsistent healthcare provider education and training on ME; and the heterogeneity of care coordinated by family physicians.

Conclusions: People living with ME in Canada face significant barriers to care, though this has received relatively limited attention. This synthesis, which points to several areas for future research, can be used as a starting point for researchers, healthcare providers and decision-makers who are new to the area or encountering ME more frequently due to the COVID-19 pandemic.

Source: Said Hussein, Lauren Eiriksson, Maureen MacQuarrie, Scot Merriam, Maria Dalton, Eleanor Stein, Rosie Twomey. Healthcare system barriers impacting the care of Canadians with myalgic encephalomyelitis: a scoping review. medRxiv [Preprint] https://www.medrxiv.org/content/10.1101/2023.09.20.23295809v1.full-text (Full text)

Long COVID symptoms in a population-based sample of persons discharged home from hospital

Abstract:

in English, French

Objectives: The impact of long COVID among persons hospitalized and discharged home is unknown. We aimed to (1) report the prevalence of long COVID in persons hospitalized for COVID-19 and discharged home; (2) estimate the prevalence of physical, sensory, and psychological/mental health impairments; and (3) explore associated factors.

Methods: We conducted a telephone survey of adult residents in Laval, Quebec, who were discharged home ≥ 2 months post-hospitalization for COVID-19. Participants responded to a standard questionnaire regarding persistent symptoms. We calculated the prevalence of long COVID and of persistent types of symptoms and evaluated associated factors using bivariate analysis and multivariable logistic regression.

Results: In our sample (n = 398), 70% reported physical symptoms, 58% psychological problems, and 16% sensory impairments. 31.5% reported being troubled by persistent symptoms (long COVID). Factors associated with long COVID were a greater number of symptoms (odds ratio (OR) = 1.97, 95% confidence interval (CI) = 1.69-2.28) and increased hospital stay (OR = 1.03, 95% CI = 1.01-1.06). Other factors associated with physical and psychological symptoms were female sex (OR = 2.17, 95% CI = 1.27-3.71 and OR = 2.06, 95% CI = 1.25-3.39; respectively), higher education level (OR = 2.10, 95% CI = 1.20-3.68 and OR = 2.43, 95% CI = 1.44-4.14; respectively), and obesity (OR = 1.95, 95% CI = 1.15-3.34 and OR = 1.70, 95% CI = 1.05-2.77; respectively).

Conclusion: In this population-based study of persons hospitalized for COVID-19 and discharged home, nearly one third were troubled by symptoms for 2 months or more post-discharge. There was a high proportion with persistent physical and psychological/mental health symptoms. Further research will assess the specific needs of these patients to inform health policy makers on service requirements for these persons.

Source: Feldman DE, Boudrias MH, Mazer B. Long COVID symptoms in a population-based sample of persons discharged home from hospital. Can J Public Health. 2022 Sep 21:1–10. doi: 10.17269/s41997-022-00695-9. Epub ahead of print. PMID: 36131218; PMCID: PMC9491248. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9491248/ (Full text)

Recent insights into 3 underrecognized conditions

The Ontario Ministry of Health and Long-Term Care recently released the interim report of a task force charged with providing recommendations on 3 symptom-based conditions that have both shared and distinctive features (Box 1): myalgic encephalomyelitis–chronic fatigue syndrome (ME-CFS), fibromyalgia (FM), and environmental sensitivities–multiple chemical sensitivity (ES-MCS).

You can read the report HERE.

Chronic fatigue syndrome and fibromyalgia in Canada: prevalence and associations with six health status indicators

Abstract:

INTRODUCTION: Few studies have considered the factors independently associated with chronic fatigue syndrome (CFS) and/or fibromyalgia (FM) or considered the impact of these conditions on health status using population-based data.

METHODS: We used data from the nationally representative 2010 Canadian Community Health Survey (n = 59 101) to describe self-reported health professional-diagnosed CFS and/or FM, and their associations with 6 health status indicators.

RESULTS: In 2010, diagnosed CFS and FM are reported by 1.4% (95% confidence interval [CI]: 1.3%-1.6%) and 1.5% (1.4%-1.7%), respectively, of the Canadian household population aged 12 years and over, with comorbid CFS and FM affecting 0.3% (0.3%-0.4%) of that population. Prevalent CFS and/or FM were more common among women, adults aged 40 years and over, those with lowest income, and those with certain risk factors for chronic disease (i.e. obesity, physical inactivity and smoking). After controlling for differences between the groups, people with CFS and/or FM reported poorer health status than those with neither condition on 5 indicators of health status, but not on the measure of fair/poor mental health. Having both CFS and FM and having multiple comorbid conditions was associated with poorer health status.

CONCLUSION: Co-occurrence of CFS and FM and having other chronic conditions were strongly related to poorer health status and accounted for much of the differences in health status. Understanding factors contributing to improved quality of life in people with CFS and/or FM, particularly in those with both conditions and other comorbidities, may be an important area for future research.

Source: Rusu C, Gee ME, Lagacé C, Parlor M. Chronic fatigue syndrome and fibromyalgia in Canada: prevalence and associations with six health status indicators. Health Promot Chronic Dis Prev Can. 2015 Mar;35(1):3-11. [Article in English, French; Abstract available in French from the publisher] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939456/ (Full article)

Functional impairment in chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity

Abstract:

OBJECTIVE: To characterize patients diagnosed with multiple chemical sensitivity (MCS), chronic fatigue syndrome (CFS), or fibromyalgia (FM), to compare their level of function with Canadian population average values, and to assess factors associated with function.

DESIGN: Chart review and abstraction of clinical information.

SETTING: The Environmental Health Clinic (EHC) at Women’s College Hospital in Toronto, Ont, which is a provincial referral centre for patients with illnesses with suspected environmental links, especially MCS, CFS, and FM.

PARTICIPANTS: A total of 128 consecutive patients diagnosed with 1 or more of MCS, CFS, or FM, seen between January 2005 and March 2006 at the EHC.

MAIN OUTCOME MEASURES: Demographic and socioeconomic characteristics, comorbid diagnoses, duration of illness, health services usage, life stresses, helpful therapeutic strategies, and functional impairment measured by the Short Form-36, compared with Canadian population average values. Factors significantly associated with function in bivariate analyses were included in multiple linear and logistic regression models.

RESULTS: The patient population was predominantly female (86.7%), with a mean age of 44.6 years. Seventy-eight patients had discrete diagnoses of 1 of MCS, CFS, or FM, while the remainder had 2 or 3 overlapping diagnoses. Most (68.8%) had stopped work, and on average this had occurred 3 years after symptom onset. On every Short Form-36 subscale, patients had markedly lower functional scores than population average values, more so when they had 2 or 3 of these diagnoses. Having FM, younger age at onset, and lower socioeconomic status were most consistently associated with poor function.

CONCLUSION: Patients seen at the EHC demonstrated marked functional impairment, consistent with their reported difficulties working and caring for their homes and families during what should be their peak productive years. Early comprehensive assessment, medical management, and social and financial support might avoid the deterioration of function associated with prolonged illness. Education and information resources are required for health care professionals and the public, along with further etiologic and prognostic research.

Source: Lavergne MR, Cole DC, Kerr K, Marshall LM. Functional impairment in chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity. Can Fam Physician. 2010 Feb;56(2):e57-65. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821254/ (Full article)

Factors associated with depression among individuals with chronic fatigue syndrome: findings from a nationally representative survey

Abstract:

OBJECTIVES: Most previous research regarding chronic fatigue syndrome (CFS) and depression has relied on clinical samples. The current research determined the prevalence and correlates of depression among individuals with CFS in a community sample.

METHODS: The nationally representative Canadian Community Health Survey, conducted in 2000/2001, included an unweighted sample size of 1045 individuals who reported a diagnosis of CFS and had complete data on depression. Respondents with CFS who were depressed (n = 369) were compared to those who were not depressed (n = 676). Chi-square analyses, t-tests and a logistic regression were conducted.

RESULTS: Thirty-six per cent of individuals with CFS were depressed. Among individuals with CFS, depression was associated with lower levels of mastery and self-esteem. In the logistic regression analyses, the odds of depression among individuals with CFS were higher for females, younger respondents, those with lower incomes and food insecurity and those whose activities were limited by pain. Two in five depressed individuals had not consulted with any mental health professional in the preceding year. Twenty-two per cent of depressed respondents had seriously considered suicide in the past year. Individuals with CFS who were depressed were particularly heavy users of family physicians, with an average of 11.1 visits annually (95% confidence interval = 10.7, 11.6).

CONCLUSION: It is important for clinicians to assess depression and suicidal ideation among their patients with CFS, particularly among females, those reporting moderate to severe pain, low incomes and inadequate social support.

Source: Fuller-Thomson E, Nimigon J. Factors associated with depression among individuals with chronic fatigue syndrome: findings from a nationally representative survey. Fam Pract. 2008 Dec;25(6):414-22. doi: 10.1093/fampra/cmn064. Epub 2008 Oct 3. http://fampra.oxfordjournals.org/content/25/6/414.long (Full article)

Chronic fatigue syndrome comes out of the closet

An Alberta court ruling and new guidelines for physicians issued by the Quebec medical college are giving chronic fatigue syndrome a legitimacy it never before enjoyed. What will this mean for physicians?

Chronic fatigue syndrome (CFS) is gaining unprecedented legitimacy in Canada because of a recent Alberta count ruling, new guidelines from the Quebec medical college and recent research suggesting that the syndrome may have a biological basis. There is little doubt these developments will affect physicians across Canada.

Although viewed as a modern phenomenon, CFS was first reported by Hippocrates and has been known this century under various names: myalgic encephalomyelitis, Iceland disease, Epstein-Barr virus and yuppie flu. It has been labelled as CFS since 1988, and is currently estimated to affect 20 000 to 30 000 Canadian adults. According to the Centers for Disease Control and Prevention, CFS involves chronic fatigue for at least 6 months and a minimum of 4 other symptoms (p. 519). Scientists and doctors have been debating its existence and symptoms for years, but the debate may be winding down because of an Alberta court case (p. 533).

In March an Alberta woman finally won her case against Crown Life when the court ruled that she qualified for long-term disability benefits because of CFS. The well-publicized case emphasized the difficulty physicians have in diagnosing the illness, and the Alberta College of Physicians and Surgeons hopes to respond with CFS guidelines within a year. Dr. Brian Ward, the assistant registrar in charge of standards, says the college’s interest “began long before the case.” He says it has received frequent complaints from patients with CFS who can’t find physicians willing to treat them or follow their conditions. “They’ve asked us to increase the level of awareness among physicians and to provide education,” says Ward.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1229658/pdf/cmaj_159_5_537.pdf

Comment in:

What causes chronic fatigue? [CMAJ. 1999]

Source: Sibbald B. Chronic fatigue syndrome comes out of the closet. CMAJ. 1998 Sep 8;159(5):537-41. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1229658/

Chronic fatigue syndrome gets court’s nod of approval as legitimate disorder

Lawyer Karen Capen looks at the implications of a recent Alberta court case involving chronic fatigue syndrome. She thinks Canada’s physicians should pay close attention to this precedent-setting case.

Few medical diagnoses are more hotly debated than chronic fatigue syndrome (CFS). Now, an Alberta court has added to the controversy. In Baillie v. Crown Life, a judge ruled that a women with CFS qualifies for long-term disability benefits.1 Crown Life was ordered to pay benefits to plaintiff Sharon Baillie, a former senior computer systems analyst with the insurance company.

Part of the case dealt with the insurance policy and the time requirements for filing a claim. For physicians, however, the ruling’s importance centres on how difficult it is to diagnose the condition.

This legal recognition of CFS, which the Alberta court handed down in March, should alert doctors of the need to understand the range of symptoms that fall within the condition’s diagnostic profile. The symptoms assigned to CFS generally include at least 6 months of extreme fatigue that reduces a person’s activity by 50% or more. This is accompanied by at least 4 other problems such as aching muscles and joints, headache, sleep disturbances, memory and concentration problems, and sore throat. Although the cause has yet to be determined conclusively, it is thought to involve a virus and/or a weakened immune system.

In recognizing CFS, the Alberta court recognized that a number of medical bodies have done the same thing, including the World Health Organization and the Centers for Disease Control and Prevention in Atlanta.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1229657/pdf/cmaj_159_5_533.pdf

Comment in:

What causes chronic fatigue? [CMAJ. 1999]

Source: Capen K. Chronic fatigue syndrome get court’s nod of approval as legitimate disorder. CMAJ. 1998 Sep 8;159(5):533-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1229657/pdf/cmaj_159_5_533.pdf