Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome

McManimen, Stephanie; Devendorf, Andrew; Brown, Abigail; Moore, Billie; Moore, James H.; Jason, Leonard A.

doi:10.1080/21641846.2016.1236588

Cited by 32 publications

(40 citation statements)

References 82 publications

(79 reference statements)

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“…In addition to the increased mortality due to these causes, the 2006 Jason and 2016 McManimem studies also reported that these deaths occurred at a significantly earlier age than normal [31,33].…”

Section: Usmentioning

confidence: 99%

“…However, one of the criteria used to select y = 107326x 0.5541 $1,000,000 $10,000,000 $100,000,000 $1,000,000,000 $10,000,000,000 1,000 100,000 10,000,000 patients in this study required only six months of chronic fatigue for which there was no medical explanation [36]. As McManimen noted, use of these criteria could have included patients who do not have ME/ CFS and could have also included more patients suffering instead from a mental illness, either of which could have resulted in skewed findings [33].…”

Section: Estimating Yllmentioning

confidence: 99%

“…However, the literature on the pathology of the disease provides a reasonable basis to postulate how ME/CFS could result in increased mortality due to cancer, cardiovascular disease, and suicide [33]. Including only the fraction of deaths above those seen in the population at large is intended to focus on the complications due to the disease.…”

Section: Limitationsmentioning

confidence: 99%

“…However, studies by , March (2014), and McManimen (2016) have documented abnormally high levels of death due to cancer, cardiovascular disease, and suicide [31][32][33]. Jason analyzed a memorial list of 166 deceased individuals and reported that approximately 20% died of each of these three causes.…”

Section: Estimating Yllmentioning

confidence: 99%

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Estimating the disease burden of ME/CFS in the United States and its relation to research funding

Dimmock¹,

Mirin²,

Jason³

2016

J Med Therap

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At the National Institutes of Health (NIH), burden of disease is an important factor in funding decisions along with such factors as scientific opportunity, the quality of the science, and the interest of researchers. Recent studies have quantified the burden for a number of diseases in the United States and the NIH has used that information to analyze how its own funding patterns correspond to disease burden. However, the burden of disease has not been quantified for myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS) and is often underestimated due to a lack of research and the misperceptions about the nature of the disease.Using the limited information in the literature, this paper develops a preliminary estimate of the disease burden of ME/CFS in the United States, using the World Health Organization's Disability Adjusted Life Years (DALY) measure. The ME/CFS DALY estimate is then compared to the NIH's 2013 analysis of research funding versus DALY across other funded diseases in order to estimate a level of funding for ME/CFS that would be commensurate with disease burden.Even given the limitations arising from sparse data, this analysis demonstrates that federal research funding for this disease is far less than what would be expected by the burden of the disease. We conclude that the annual research funding for ME/CFS would need to increase twenty-five fold or more to be commensurate with disease burden. This level of funding would best leverage the growing interest of researchers and the significant scientific opportunities that exist to understand the pathology of this disease and to advance diagnostics and treatments.

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Section: Usmentioning

confidence: 99%

Section: Estimating Yllmentioning

confidence: 99%

Section: Limitationsmentioning

confidence: 99%

Section: Estimating Yllmentioning

confidence: 99%

See 2 more Smart Citations

Estimating the disease burden of ME/CFS in the United States and its relation to research funding

Dimmock¹,

Mirin²,

Jason³

2016

J Med Therap

View full text Add to dashboard Cite

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“…Several studies examining mortality among individuals with ME and CFS have found an increased risk of early mortality with cancer, cardiovascular issues, and suicide (Jason, Corradi, Gress, Williams, & Torres‐Harding, ; Jiménez‐Ortiz, ; McManimen et al., ; Roberts, Wessely, Chalder, Chang, & Hotopf, ). For example, Roberts et al.…”

mentioning

confidence: 99%

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome

McManimen

McClellan

Stoothoff

et al. 2018

Journal Community Psychology

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Prior research has found a heightened risk of suicide in patients with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). It is possible that a number of factors including stigma, unsupportive social interactions, and severe symptoms could lead to the development of depression, suicidal ideation, and heightened risk of suicide in this patient population. Prior studies have indicated that patients often report the legitimacy of their illness being questioned by family, friends, and even their physicians. This study aimed to determine whether stigma experienced, social support, symptomology, and functioning may be associated with depression and endorsement of suicidal ideation (SI) in patients with a self‐reported diagnosis of ME or CFS. Findings indicated that participants that endorsed both SI and depression, in contrast to those that did not, experienced more frequent unsupportive social interactions in the form of blame for their illness, minimization of its severity, and social distancing from others. In addition, 7.1% of patients with ME and CFS endorsed SI but do not meet the criteria for clinical depression These findings highlight the importance of stigma and unsupportive social interactions as risk factors for suicidal thoughts or actions among patients with ME and CFS. Community psychologists have an important role to play in helping educate health care professionals and the public to these types of risk factors for patients marginalized by ME and CFS.

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Peripheral endothelial dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome

et al. 2020

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Aims Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystem disease. Evidence for disturbed vascular regulation comes from various studies showing cerebral hypoperfusion and orthostatic intolerance. The peripheral endothelial dysfunction (ED) has not been sufficiently investigated in patients with ME/CFS. The aim of the present study was to examine peripheral endothelial function in patients with ME/CFS. Methods and results Thirty-five patients [median age 40 (range 18-70) years, mean body mass index 23.8 ± 4.2 kg/m 2 , 31% male] with ME/CFS were studied for peripheral endothelial function assessed by peripheral arterial tonometry (EndoPAT2000). Clinical diagnosis of ME/CFS was based on Canadian Criteria. Nine of these patients with elevated antibodies against β2-adrenergic receptor underwent immunoadsorption, and endothelial function was measured at baseline and 3, 6, and 12 months follow-up. ED was defined by reactive hyperaemia index ≤1.81. Twenty healthy subjects of similar age and body mass index were used as a control group. Peripheral ED was found in 18 of 35 patients (51%) with ME/CFS and in 4 healthy subjects (20%, P < 0.05). Patients with ED, in contrast to patients with normal endothelial function, reported more severe disease according to Bell score (31 ± 12 vs. 40 ± 16, P = 0.04), as well as more severe fatigue-related symptoms (8.62 ± 0.87 vs. 7.75 ± 1.40, P = 0.04) including a higher demand for breaks [9.0 (interquartile range 7.0-10.0) vs. 7.5 (interquartile range 6.0-9.25), P = 0.04]. Peripheral ED showed correlations with more severe immune-associated symptoms (r = À0.41, P = 0.026), such as sore throat (r = À0.38, P = 0.038) and painful lymph nodes (r = À0.37, P = 0.042), as well as more severe disease according to Bell score (r = 0.41, P = 0.008) and symptom score (r = À0.59, P = 0.005). There were no differences between the patient group with ED and the patient group with normal endothelial function regarding demographic, metabolic, and laboratory parameters. Further, there was no difference in soluble vascular cell adhesion molecule and soluble intercellular adhesion molecule levels. At baseline, peripheral ED was observed in six patients who underwent immunoadsorption. After 12 months, endothelial function had improved in five of these six patients (reactive hyperaemia index 1.58 ± 0.15 vs. 2.02 ± 0.46, P = 0.06). Conclusions Peripheral ED is frequent in patients with ME/CFS and associated with disease severity and severity of immune symptoms. As ED is a risk factor for cardiovascular disease, it is important to elucidate if peripheral ED is associated with increased cardiovascular morbidity and mortality in ME/CFS.

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Mortality in patients with myalgic encephalomyelitis and chronic fatigue syndrome

Cited by 32 publications

References 82 publications

Estimating the disease burden of ME/CFS in the United States and its relation to research funding

Estimating the disease burden of ME/CFS in the United States and its relation to research funding

Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome

Peripheral endothelial dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome

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