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

Abstract:

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.

Source: McManimen SL, McClellan D, Stoothoff J, Jason LA. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. J Community Psychol. 2018 Nov;46(8):959-971. doi: 10.1002/jcop.21984. Epub 2018 May 4. https://www.ncbi.nlm.nih.gov/pubmed/30311972

Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness

Abstract:

Chronic illness is a risk factor for suicide but is often explained with depression. Research has shown an increased suicide rate in patients with myalgic encephalomyelitis and chronic fatigue syndrome, but specific risk factors have been unexplored. We qualitatively analyzed responses from 29 patients who endorsed suicidal ideation but did not meet depression criteria.

Two themes were developed: (1) feeling trapped and (2) loss of self, loss of others, stigma and conflict. Myalgic encephalomyelitis and chronic fatigue syndrome caused patients severe disability, restructured their lives, and inflicted serious pain. Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available.

Source: Devendorf AR, McManimen SL, Jason LA. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2018 Jul 1:1359105318785450. doi: 10.1177/1359105318785450. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29992837

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

Abstract:

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.

Source: Stephanie L. McManimen, Damani McClellan, Jamie Stoothoff, Leonard A. Jason. Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Community Psychology, May 2018. https://doi.org/10.1002/jcop.21984

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

Comment on

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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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