Tag: mortality

Investigating the ME/CFS experience through qualitative analysis of memorial entries

Abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an impairing chronic condition characterized by exhaustion and worsening symptoms following exertion, often accompanied by pain, sleep issues, and cognitive issues. Historically, ME/CFS was not considered to be linked to mortality, however, more recent studies have questioned this assumption.

National Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Foundation maintains a memorial list consisting of deceased individuals who had ME/CFS. This secondary qualitative thematic analysis analyzed 505 entries on the National CFIDS Foundation memorial list, inductively developing a codebook from the publicly available memorial records. Two coders independently coded each entry before meeting to develop themes that incorporated the understanding of each coder.

Themes emerged within four societal levels: systemic neglect and institutional failure; clinical neglect and failures; social disconnection and advocacy; and personal burden and quality of life. Describing systemic neglect and institutional failure, entries recounted a lack of acknowledgement by health, insurance, and disability authorities, as well as a lack of investment in research and treatment of ME/CFS at the federal level. Negative healthcare experiences included misdiagnosis and misattribution of symptoms, dismissal, inadequate knowledge and experience with treating ME/CFS, and the recommendation of unhelpful treatments. The disbelief and misattribution by acquaintances described in the entries contributed to feelings of social isolation, leading some to turn to advocacy work and support groups.

Entries also described the individual impact of the condition, including functional impairments, the impact of symptoms, management strategies, financial stress, and mental health symptoms. Some deaths were directly and indirectly attributed to ME/CFS by individuals with ME/CFS and their acquaintances. This analysis provides a glimpse of the lived experience as well as death of individuals with ME/CFS through the lens of acquaintances of the deceased, emphasizing the substantial impact of the condition.

Source: Sirotiak Z, Amro HJ (2026) Investigating the ME/CFS experience through qualitative analysis of memorial entries. PLoS One 21(4): e0343374. https://doi.org/10.1371/journal.pone.0343374 https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0343374 (Full text)

Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Abstract:

BACKGROUND: There is a dearth of research examining mortality in individuals with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Some studies suggest there is an elevated risk of suicide and earlier mortality compared to national norms. However, findings are inconsistent as other researchers have not found significant increases in all-cause mortality for patients.

OBJECTIVE: This study sought to determine if patients with ME or CFS are reportedly dying earlier than the overall population from the same cause.

METHODS: Family, friends, and caregivers of deceased individuals with ME or CFS were recruited through social media, patient newsletters, emails, and advocate websites. This study analyzed data including cause and age of death for 56 individuals identified as having ME or CFS.

RESULTS: The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].

CONCLUSIONS: The results suggest there is an increase in risk for earlier mortality in patients with ME and CFS. Due to the small sample size and over-representation of severely ill patients, the findings should be replicated to determine if the directional differences for suicide and cancer mortality are significantly different from the overall U.S. population.

 

Source: McManimen SL, Devendorf AR, Brown AA, Moore BC, Moore JH, Jason LA. Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Fatigue. 2016;4(4):195-207. doi: 10.1080/21641846.2016.1236588. Epub 2016 Oct 12. https://www.ncbi.nlm.nih.gov/pubmed/28070451

 

Suicide risk in people with chronic fatigue syndrome

The risk of dying is increased in many illnesses, but the mortality associated with chronic fatigue syndrome is relatively unexplored. In The Lancet, Emmert Roberts and colleagues1 report results from a case register study that linked the clinical details of more than 2000 people with chronic fatigue syndrome presenting to a specialist clinic (in London and the south of England) with mortality outcomes over 7 years. This is the largest study of its type so far, and used a robust case definition. The researchers noted that the overall risk of death in patients with chronic fatigue syndrome seemed no different from the risk in the general population. Cancer mortality was also similar. However, the findings for suicide deaths were striking—five people died during the 7-year period. Based on the suicide rate in the general population of England and Wales, the expected number would have been less than one death by suicide. In other words, suicide risk was increased almost seven-fold. A previous US study2 reported an increase in suicide mortality in people with fatigue symptoms, but was too small to show an increased suicide risk in those who met the criteria for chronic fatigue syndrome.

The results of the current study are potentially very important but need to be interpreted with caution. The study was quite small for an investigation of mortality (n=2147 patients of whom 17 died). This small sample meant that the stratified analyses in particular (investigation of the risk of death in sex, age, diagnostic, and deprivation subgroups) lacked statistical power. The increased suicide mortality (sex-standardised mortality ratio 6·85, 95% CI 2·22–15·98; p=0·002) was based on just a few deaths and the confidence intervals were wide. Two fewer suicide deaths would have meant that the findings were no longer significant.

The cohort itself was well defined but consisted of people who attended a national specialist centre run jointly by general medical and mental health service providers. This could mean that participants were representative of people with more severe or complex chronic fatigue syndrome, and the mortality findings might not be applicable to people with the disorder in primary care.

Read the rest of this comment here: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00270-1/fulltext

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Source: Kapur N, Webb R. Suicide risk in people with chronic fatigue syndrome. Lancet. 2016 Apr 16;387(10028):1596-7. doi: 10.1016/S0140-6736(16)00270-1. Epub 2016 Feb 10. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00270-1/fulltext (Full article)

 

 

Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register

Abstract:

BACKGROUND: Mortality associated with chronic fatigue syndrome is uncertain. We investigated mortality in individuals diagnosed with chronic fatigue syndrome in secondary and tertiary care using data from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) register.

METHODS: We calculated standardised mortality ratios (SMRs) for all-cause, suicide-specific, and cancer-specific mortality for a 7-year observation period using the number of deaths observed in SLaM records compared with age-specific and sex-specific mortality statistics for England and Wales. Study participants were included if they had had contact with the chronic fatigue service (referral, discharge, or case note entry) and received a diagnosis of chronic fatigue syndrome.

FINDINGS: We identified 2147 cases of chronic fatigue syndrome from CRIS and 17 deaths from Jan 1, 2007, to Dec 31, 2013. 1533 patients were women of whom 11 died, and 614 were men of whom six died. There was no significant difference in age-standardised and sex-standardised mortality ratios (SMRs) for all-cause mortality (SMR 1·14, 95% CI 0·65-1·85; p=0·67) or cancer-specific mortality (1·39, 0·60-2·73; p=0·45) in patients with chronic fatigue syndrome when compared with the general population in England and Wales. This remained the case when deaths from suicide were removed from the analysis. There was a significant increase in suicide-specific mortality (SMR 6·85, 95% CI 2·22-15·98; p=0·002).

INTERPRETATION: We did not note increased all-cause mortality in people with chronic fatigue syndrome, but our findings show a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed suicide and to assess suicidality adequately in patients with chronic fatigue syndrome.

FUNDING: National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London.

Copyright © 2016 Roberts et al. Open Access article distributed under the terms of CC BY. Published by Elsevier Ltd.. All rights reserved.

 

Source: Roberts E, Wessely S, Chalder T, Chang CK, Hotopf M. Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register. Lancet. 2016 Apr 16;387(10028):1638-43. doi: 10.1016/S0140-6736(15)01223-4. Epub 2016 Feb 10. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01223-4/fulltext (Full article)

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Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS

Abstract:

There is evidence that disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways and a lowered antioxidant status are important pathophysiological mechanisms underpinning myalgic encephalomyelitis / chronic fatigue syndrome(ME/CFS). Important precipitating and perpetuating factors for ME/CFS are (amongst others) bacterial and viral infections; bacterial translocation due to an increased gut permeability; and psychological stress.

Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years. These findings implicate that ME/CFS is a risk factor to cardio-vascular disorder.

This review demonstrates that disorders in various IO&NS pathways provide explanations for the earlier mortality due to cardiovascular disorders in ME/CFS. These pathways are: a) chronic low grade inflammation with extended production of nuclear factor kappa B and COX-2 and increased levels of tumour necrosis factor alpha; b) increased O&NS with increased peroxide levels, and phospholipid oxidation including oxidative damage to phosphatidylinositol; c) decreased levels of specific antioxidants, i.e. coenzyme Q10, zinc and dehydroepiandrosterone-sulphate; d) bacterial translocation as a result of leaky gut; e) decreased omega-3 polyunsatutared fatty acids (PUFAs), and increased omega-6 PUFA and saturated fatty acid levels; and f) the presence of viral and bacterial infections and psychological stressors. The mechanisms whereby each of these factors may contribute towards cardio-vascular disorder in ME/CFS are discussed.

ME/CFS is a multisystemic metabolic-inflammatory disorder. The aberrations in IO&NS pathways may increase the risk for cardiovascular disorders.

 

Source: Maes M, Twisk FN. Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders in ME/CFS. Neuro Endocrinol Lett. 2009;30(6):677-93. https://www.ncbi.nlm.nih.gov/pubmed/20038921

 

Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder

Abstract:

INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a medical illness characterized by disorders in inflammatory and oxidative and nitrosative (IO&NS) pathways.

METHODS: This paper examines the role of Coenzyme Q10 (CoQ10), a mitochondrial nutrient which acts as an essential cofactor for the production of ATP in mitochondria and which displays significant antioxidant activities. Plasma CoQ10 has been assayed in 58 patients with ME/CFS and in 22 normal controls; the relationships between CoQ10 and the severity of ME/CFS as measured by means of the FibroFatigue (FF) scale were measured.

RESULTS: Plasma CoQ10 was significantly (p=0.00001) lower in ME/CFS patients than in normal controls. Up to 44.8% of patients with ME/CFS had values beneath the lowest plasma CoQ10 value detected in the normal controls, i.e. 490 microg/L. In ME/CFS, there were significant and inverse relationships between CoQ10 and the total score on the FF scale, fatigue and autonomic symptoms. Patients with very low CoQ10 (<390 microg/L) suffered significantly more from concentration and memory disturbances.

DISCUSSION: The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation.

 

Source: Maes M, Mihaylova I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E. Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder. Neuro Endocrinol Lett. 2009;30(4):470-6. https://www.ncbi.nlm.nih.gov/pubmed/20010505

 

Mortality in a cohort of chronically fatigued patients

Abstract:

BACKGROUND: Comprehensive studies of mortality among patients with chronic fatigue (CF) and chronic fatigue syndrome (CFS) have not been published, but several sources suggest that CFS is associated with an elevated risk for suicide.

METHOD: Data on 1201 chronically fatigued patients followed in a university-affiliated tertiary-care clinic for up to 14 years were submitted to the Center for Disease Control and Prevention (CDC) National Death Index (NDI) to evaluate all-cause and suicide-caused death rates against standardized mortality rates (SMRs). We used Life Table Analysis to examine the influence of sex and diagnoses of CFS and depression.

RESULTS: All-cause mortality in chronically fatigued patients was no higher than expected, but suicide-caused death rates were more than eight times higher than in the US general population. The significant elevation in the SMR of suicide was restricted to those who did not meet criteria for CFS [SMR(CF)=14.2, 95% confidence interval (CI) 5.7-29.3 versus SMR(CFS)=3.6, 95% CI 0.4-12.9]. Among chronically fatigued patients who did not meet CFS criteria, those with a lifetime history of major depression (MD) had higher suicide-caused death rates than among their non-depressed counterparts (SMR(MD)=19.1, 95% CI 7.0-41.5 versus SMR(NMD)=5.6, 95% CI 0.1-31.4), although the difference was not significant.

CONCLUSIONS: CFS does not appear to be associated with increased all-cause mortality or suicide rates. Clinicians, however, should carefully evaluate patients with CF for depression and suicidality.

 

Source: Smith WR, Noonan C, Buchwald D. Mortality in a cohort of chronically fatigued patients. Psychol Med. 2006 Sep;36(9):1301-6. https://www.ncbi.nlm.nih.gov/pubmed/16893495

 

Causes of death among patients with chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list.

The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.

 

Source: Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 2006 Aug;27(7):615-26. https://www.ncbi.nlm.nih.gov/pubmed/16844674

 

Chronic active Epstein-Barr virus infection in children in Japan

Abstract:

The patients with chronic active Epstein-Barr virus infection (CAEBV) in childhood in Japan are described. Among 39 registered cases, 20 patients were males and 19 were females. Unlike the X-linked lymphoproliferative syndrome, there was no hereditary background.

The incidence of hypersensitivity to mosquito bites was high (31.3%) as a past history. Most patients exhibited hepatomegaly (92.3%), splenomegaly (87.2%) and fever (84.6%). The incidence of absent anti-EB virus nuclear antigen titres was unexpectedly low (17.1%). Lymphoreticular disorders and cardiovascular diseases were major complications.

Twenty-four (61.5%) patients died 6 months to 8 years after the onset, mainly of hepatic failure (eight cases), cardiac failure (five cases), virus-associated haemophagocytic syndrome (three cases) and haematological malignancies (two cases). This study reveals the CAEBV in Japan has several clinical features and should be informative for the pathogenesis of EB virus.

 

Source: Ishihara S, Okada S, Wakiguchi H, Kurashige T, Morishima T, Kawa-Ha K. Chronic active Epstein-Barr virus infection in children in Japan. Acta Paediatr. 1995 Nov;84(11):1271-5. http://www.ncbi.nlm.nih.gov/pubmed/8580625