Factors influencing the prognosis of patients with ME/CFS
French researchers have confirmed the results of previous studies that found poor rates of recovery in ME/CFS. Only 8.3% of 168 patients recovered and 4.8% significantly improved. Delay in diagnosis reduced the chance of recovery but being older at the start of the illness led to better outcomes. They speculated that middle aged people might have found it easier to apply pacing strategies and adjust activities according to their energy envelope, maybe even taking early retirement to do so.
“It therefore seems necessary to diagnose and manage people with ME/CFS as early as possible to prevent worsening of symptoms and improve prognosis. To achieve this, it is important to raise awareness among health professionals, especially primary care physicians about ME/CFS and PEM.”
Patients were considered recovered if:
they were no longer experiencing PEM for at least 6 months, reported complete remission of their baseline symptoms, and were able to perform their premorbid levels of physical, cognitive, social, and occupational functioning without pacing strategies or taking medications.
Patients were considered significantly improved if:
they were no longer experiencing PEM for at least 6 months, reported a substantial reduction in the number, frequency, or severity of their baseline symptoms, and were restoring certain levels of functioning in everyday activities, with a possible adherence to pacing strategies and/or medications.
Research abstract:
Background:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term debilitating multisystem condition with poor prognosis. Studies that examined predictors of ME/CFS outcomes yielded contradictory results.
Methods:
We aimed to explore epidemiological and clinical prognostic factors of ME/CFS using operationalized criteria for recovery/improvement. Adult ME/CFS patients who attended the Internal Medicine Department of Angers University Hospital, Angers, France between October 2011 and December 2019, and were followed up until December 2020, were included retrospectively. Their medical records were reviewed for data collection.
Patients were classified into two groups according to the presence or absence of recovery/improvement (R/I) and compared for epidemiological characteristics, fatigue features, post-exertional malaise severity, clinical manifestations, and comorbidities. The subgroups of recovered and significantly improved patients were then compared. 168 patients were included.
Results:
Recovery and improvement rates were 8.3% and 4.8%, respectively. Older age at disease onset was associated with R/I (OR 1.06 [95% CI 1.007–1.110] (p = 0.028)), while diagnostic delay was inversely associated with R/I (OR 0.98 [95% CI 0.964–0.996] (p = 0.036)).
Conclusion
The study findings confirmed the poor prognosis of ME/CFS and the deleterious effect of diagnostic delay on disease progression. Interestingly, being older at disease onset was associated with better outcomes, which offers hope to patients for recovery/improvement even at an advanced age.
Discussion:
… Unfortunately, almost all ME/CFS patients are un- or misdiagnosed for long periods, resulting in a long delay in time to diagnosis. This can be due to the heterogeneous non-specific ME/CFS symptoms and the lack of knowledge about ME/CFS among primary care physicians. Patients may consult many different specialists and undergo multiple explorations before ME/CFS diagnosis is made. In addition to the fact that waiting for diagnosis is always a worrying time for patients, diagnostic delay exacerbates, in most cases, the PEM as well as the baseline symptoms and negatively impacts the physical and mental state of patients.
It therefore seems necessary to diagnose and manage people with ME/CFS as early as possible to prevent worsening of symptoms and improve prognosis. To achieve this, it is important to raise awareness among health professionals, especially primary care physicians about ME/CFS and PEM.
Factors influencing the prognosis of patients with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, by Alaa Ghali, Carole Lacout, Jacques-Olivier Fortrat, Karine Depres, Maria Ghali and Christian Lavigne in Diagnostics 2022, 12(10), 2540; [doi.org/10.3390/diagnostics12102540] 19 October 2022
(This article belongs to the Special Issue Chronic Fatigue-Spectrum Disorders in the Era of COVID-19)
