The long-term clinical and social consequences of Ebola infection for survivors are unknown. In November 2014 (less than a year after the Ebola epidemic began in West Africa), Inserm, in partnership with IRD and the infectious diseases department of the Donka University Hospital in Conakry (Guinea), organised medical monitoring of people who had survived infection with the virus, as part of a large research cohort. 802 people (adults and children) were included in the Postebogui cohort from March 2015.
The results of their monitoring show that one year after their initial hospitalisation, 3 out of 4 survivors said they still had health problems. 40% suffered fatigue or fever, but also muscle pain (38%), abdominal pain (22%), sometimes severe vision problems that could lead to blindness (18%) and depression (17%). Moreover, a quarter of the survivors said they were stigmatised. Persistence of the virus in sperm has been proven: it was found up to 18 months after the acute phase. This study allowed the researchers to define what they now call post-Ebola syndrome. This work was published in the The Lancet Infectious Diseases.
There is little data concerning people who have survived Ebola epidemics in the past. This is because there are too few survivors and research structures are in an inadequate, emergency state. The last Ebola epidemic in West Africa was so widespread that it led to an unprecedented number of deaths, but also a number of survivors never seen in the past (17,000 survivors). In the face of this new situation, fundamental medical research questions emerged. What long-term complications could the virus cause? What psycho-social consequences could survivors face? Was there a risk of belated reactivation of the virus? What is its persistence in the organism and what are the possibilities of sexual transmission?
In order to answer all of these questions, Inserm worked with the Guinean health authorities, to organise monitoring for infection survivors. Researchers from the joint research unit (Inserm/IRD) put together a cohort of people (the Postebogui cohort) who had survived the Ebola virus in Guinea in March 2015, for monitoring. 802 people (out of the 1270 declared survivors of the epidemic in Guinea) participated in this multidisciplinary study, on average one year after their initial infection.
They underwent biological, psychological and sociological monitoring, as well as measurement of their viral load, 1, 3, 6, 9 and 12 months after their inclusion in the cohort. The data in this study concerned monitoring up to July 2016. Monitoring of immunological responses will be conducted on some of the subjects in partnership with researchers from the Vaccine Research Institute (Inserm/ANRS). 45% of the participants were male. The median age was 28 years (from 1 to 79 years). One in 5 patients was a child aged under 18 years. One year after their hospitalisation, 3 quarters of the survivors said they still had clinical symptoms.
40% of patients in the cohort suffered from general symptoms (fatigue/fever/anorexia). 18% of the patients suffered eye problems (conjunctivitis, visual deficiencies which could even include blindness, and eye pain). 38% of the patients suffered musculo-skeletal pain (painful joints and muscle weakness); 35% complained of headaches; 2% of hearing loss and 22% of abdominal pain.
“The frequency of these symptoms luckily tends to decrease over time, and they become less significant as the time since the acute infection phase passes,” explains Éric Delaporte, director of the international joint unit for translational research on HIV and infectious diseases. Compared to adults, children had more episodes of fever in the long term, but less musculo-skeletal pain and eye problems than adults.
26% of survivors suffered anaemia. The Ebola virus was still present in the sperm of 5% of the men, one month to 18 months after infection. These latest results were published with more details in The journal of infectious disease in May 2016.
Survivors have a higher risk of depression. Moreover, 26% of patients said they were stigmatised after having contracted the illness. “The results of this first large cohort allow us to better characterise what we now call post-Ebola syndrome. Significant medical complications persist or appear after the acute phase of the infection. They justify medical monitoring of patients who have had Ebola, for at least 18 months after the infection,” concludes Eric Delaporte.