From The Lancet, published online 9 February 2016 (full text available).
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
Dr Emmert Roberts, MRCP; Prof Simon Wessely, FMedSci; Prof Trudie Chalder, PhD; Dr Chin-Kuo Chang, PhD†; Prof Matthew Hotopf, PhD†;
†Authors contributed equally
Department of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, Denmark Hill, London, UK
Summary
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.
From Tiddskrift for Den norske legeforenig, English translation of Norwegian study, 9 February 2016.
Investigation of suspected chronic fatigue syndrome/myalgic encephalopathy
J F Owe (1), H Næss(1), I O Gjerde(1), J E Bødtker(2), O-B Tysnes (1)
1) Department of Neurology, Haukeland University Hospital, Norway
2) Clinic of Psychosomatic Medicine, Haukeland University Hospital, Norway
Abstract
BACKGROUND
Chronic fatigue is a frequently occurring problem in both the primary and specialist health services. The Department of Neurology at Haukeland University Hospital has established a standard assessment for patients referred with suspected CFS/ME. This study reports diagnoses and findings upon assessment, and considers the benefit of supplementary examinations.
MATERIAL AND METHOD
Diagnoses and findings from examinations of 365 patients assessed for suspected CFS/ME are retrospectively reported.
RESULTS
A total of 48 patients (13.2 %) were diagnosed with CFS/ME, while a further 18 patients (4.9 %) were diagnosed with post-infectious fatigue. Mental and behavioural disorders were diagnosed in 169 patients (46.3 %), and these represented by far the largest group. Serious, but unrecognised somatic illness was discovered in two patients, while changes of uncertain significance were identified by MRI and lumbar puncture in a few patients.
INTERPRETATION
Fatigue is a frequently occurring symptom in the population. Thorough somatic and psychiatric investigation is necessary before referral to the specialist health services. Mental disorders and reactions to life crises are common and important differential diagnoses for CFS/ME. Long waiting times in the specialist health services may result in delayed diagnosis for these patients.
“Dr Elizabeth Dowsett estimates the death rate for M.E. to be roughly 3%. There are deaths due to cardiac failure, brain death, tumours, and liver failure. All kinds of deaths. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. Dr Dowsett states, ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’ Dr Dowsett explains that although these deaths are due to M.E., they are disassociated from it, and are almost never recorded in statistics as deaths from M.E.
Most deaths from M.E. occur without the fact ever being officially recorded or acknowledged. It is also true that only a very small number of M.E. deaths are given any sort of media attention. Deaths from M.E. are largely hidden from the public awareness, and the public continues to be told that M.E. is a trivial and short-term illness involving fatigue, which is also correctly referred to as ‘CFS’ and is of course never fatal.”
http://www.hfme.org/medeaths.htm
“Chronic immune activation or an infection associated with CFS may play a role in explaining the increased risk of NHL.” (Non-Hodgkin lymphoma)
http://www.ncbi.nlm.nih.gov/pubmed/22648858
Thank you Findlow for highlighting the real facts. I was out of energy, eyesight and couldn’t be bothered to even address this utter rubbish above.
You have done a better job than I was able.
My mother had all the symptoms of ME, but with cancer as well her death certificate reads’ old age’ and at 86 who could argue. No mention of 20years being house bound though!!