May 24th, 2023
Media contact: team@patientledresearch.com
The Patient-Led Research Collaborative (PLRC) has authored two new papers: “Female reproductive health impacts of Long COVID and associated illnesses including ME/CFS, POTS, and connective tissue disorders: a literature review”, published in Frontiers in Rehabilitation Science, and “Factors associated with psychiatric outcomes and coping in Long COVID”, published in Nature Mental Health.
Female reproductive health impacts:
New-onset reproductive health conditions after a SARS-CoV-2 infection are known within the Long COVID patient community and have been documented by previous patient-led research, yet are still significantly understudied. In response, members of Patient Led Research Collaborative co-authored an unparalleled literature review on the reproductive health impacts of Long COVID and infection-associated chronic illnesses in women.The review contextualizes these findings by also drawing on research evidence on female reproductive health in associated and co-occurring illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and postural orthostatic tachycardia syndrome (POTS), and connective tissue disorders like ehlers-danlos syndrome (EDS). Note: PLRC recognizes that these impacts also affect people who are not female or who are female but not cisgender, including some non-binary and transgender people.
The authors recommend future directions and priorities for research to accelerate an understanding of the driving factors and mechanisms of reproductive conditions in Long COVID and infection-associated chronic illnesses, as well as improve their diagnosis and treatment. The review article is part of the special Research Topic in Post-Acute COVID Rehabilitation in Frontiers in Rehabilitation Sciences: Interventions for Rehabilitation. It is already the most viewed article published by the journal so far in 2023.
Studies report that Long COVID can include multiple changes to the menstrual cycle, from longer, heavier, and painful, debilitating periods, to loss of ovarian function, and premature menopause. Periods in particular are associated with an overall worsening of Long COVID symptoms, which may explain the fluctuation of symptoms experienced by some patients. However, studies in reproductive health research in Long COVID have been scarce. Despite Long COVID disproportionately impacting women, trans, and gender non-conforming people, research funding and efforts in Long COVID and reproductive health have not met the needs for symptom alleviation and treatment of the patient community.
Although this research in Long COVID has been limited, relevant information can be drawn from studies on ME/CFS and POTS, two often infection-triggered illnesses frequently diagnosed in people with Long COVID. More than half of ME/CFS patients report worsening of symptoms prior to menstruation, while POTS patients can experience increased dizziness during menses. To further understand reproductive health in Long COVID, the review also examines the literature on connective tissue disorders (such as Ehlers-Danlos syndromes) and endometriosis, which are frequently diagnosed in patients with ME/CFS and POTS, though usually after long diagnostic delays. Patients with EDS and endometriosis can experience severe pain amongst other disabling symptoms and complications associated with menstruation and pregnancy.
Urgent research is needed to comprehend the impact of the menstrual cycle, pregnancy, menopause, and sex differences on disease progression and symptoms to discover effective therapeutics. The authors stress the need for increased attention on reproductive health in Long COVID and associated illnesses in women, trans and gender non-conforming people due to historic underfunding and significant impact on patients, their symptoms, and quality of life.
Factors associated with psychiatric outcomes and coping in Long Covid:
Major questions regarding the mental health impacts of Long Covid have been incompletely explored, specifically: what portion of patients have psychiatric outcomes? What are the coping skills associated with Long Covid? Given that not everyone with Long Covid has anxiety, depression, or suicidal thoughts, what factors are associated with these outcomes?
To answer some of these questions, PLRC has released a new paper describing the coping styles and factors associated with mental health aspects of Long Covid, now published in Nature Mental Health.
The study found that the majority of those with LC do not experience anxiety, depression, or suicidal thoughts, but that LC was associated with greater psychiatric outcome burden compared to those recovered from Covid-19, with higher rates of depression, anxiety, and suicidality. Additionally, the study found that these higher psychiatric outcomes in LC are associated with younger age (18-29), greater reductions in overall health, higher symptom severity, limitations to physical capability, lower income brackets, loss of income, presence of a psychiatric history, financial pressure, job or hours lost because of illness, male sex, and men and non-binary gender.
The paper additionally found mental health outcomes were associated with negative (meaning “harmful”, “dismissive”, “skeptical”, or “apathetic”) experiences with medical professionals and other support systems (family, friends, partners and employers), and that 52.9% of participants with Long Covid had experienced a negative interaction with at least one medical provider.
Crucially, the paper found that respondents with Long Covid use adaptive coping styles, with the most commonly used being acceptance, planning, active coping and use of emotional support. The least used were denial, substance use, behavioral disengagement and self-blame.
For questions, please contact team@patientledresearch.com.
About Patient-Led Research Collaborative: Patient-Led Research Collaborative (PLRC) is a multi-disciplinary group of people with lived experience of Long COVID, formed together in April 2020 through the Body Politic COVID-19 Support Group, and were the first to conduct research on Long COVID. PLRC’s work thus far has resulted in the identification of key symptoms, timeline, comorbidities, and possible treatment options for Long COVID, as well as a $4.8 million fund for biomedical research with awards decided by patients, a publication of patient-generated hypotheses, and research into the impact of reinfections, identifying Long Covid phenotypes, Long Covid impact in LMIC countries, and others. They have presented their work to the World Health Organization, United States House of Representatives, National Institutes of Health, and Centers for Disease Control and Prevention, and have influenced Long COVID clinical guidelines and legislation. For more on PLRC, visit patientledresearch.com.