Study Title: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and pregnancy – an exploratory mixed methods pilot study
Professor Mark Pearce1, Dr Emma Slack1, Dr Katrina Pears2, Professor Judith Rankin1, and Professor Julia Newton1.
- Population Health Sciences Institute, Newcastle University.
- The ME Association.
There is very little evidence exploring the potential association between ME/CFS and pregnancy outcomes, in the mother or child.
The researchers have almost completed a mixed-methods systematic review relating to ME/CFS and pregnancy, that was funded by the Newcastle Healthcare Charity. It has highlighted considerable gaps in the evidence, particularly in relation to:
- the effects of ME/CFS on pregnancy outcomes,
- the effect of pregnancy on ME/CFS severity, attitudes, and knowledge of healthcare providers,
- the experiences of those living with ME/CFS around family planning and pregnancy, and,
- the experiences of partners of those living with ME/CFS.
Primary research in America found ME/CFS worsened for 29% of women in pregnancy, and for 50% of women after pregnancy. A higher risk of spontaneous abortion, developmental delays and learning disabilities was also found, however, this might have been due to maternal age which was not adjusted for in the study.
This is the only study investigating ME/CFS and pregnancy outcomes and was very limited because it had a small sample size (n=86), did not adjust for potential confounders, and did not consider the effect of pregnancy on ME/CFS severity by trimester.
To date, there is extremely limited evidence investigating ME/CFS and pregnancy in the UK, with systematic searches identifying only one relevant case report (n=1) (Jha RR, Masson EA, Lindow SW, 1999).
This lack of evidence means that there are no evidence-based guidelines relating to ME/CFS and pregnancy to enable informed decisions about family planning, pregnancy, and birth.
We have plans for a large programme of research in this area, particularly in relation the need for support around family planning and decision making, risk of adverse pregnancy outcomes, wider care in relation to preparing for pregnancy, during pregnancy and post-natal health and the effect of pregnancy on ME/CFS severity and symptoms.
This pilot study is an essential first step in this research. It will begin in July 2023, will take 2 years to complete, and will cost £30,000. It aims to highlight:
- research priorities for people with ME/CFS and their health care providers in relation to ME/CFS and pregnancy,
- to explore experiences, attitudes, knowledge, and perceptions around ME/CFS and pregnancy,
- pregnancy decision making in both people with ME/CFS who could become/have been or are pregnant and healthcare professionals (health visitors, midwives, and doctors), and,
- to investigate what information is currently collected in routine practice relating to ME/CFS and pregnancy and how this could inform our future research plans.
The results will be published in peer reviewed journals and disseminated at conferences. The findings will be used to develop a planned future programme of work which will further the evidence base relating to ME/CFS and pregnancy, particularly in relation to risk of adverse pregnancy outcomes and the effect of pregnancy on ME/CFS severity and symptoms.
Comments from the research team
Dr Emma Slack
We are very grateful to the ME Association for funding this hugely important work examining ME/CFS and pregnancy.
There is very little evidence in this area, both in terms of pregnancy outcomes for the birthing person and child, but also in terms of the experiences of family planning and pregnancy for people with ME/CFS, their partners, and the healthcare professionals that are involved.
This absence means that there are no evidence-based guidelines that could help people with the condition – and healthcare professionals – make informed decisions about family planning, pregnancy and childbirth.
The pilot will be an essential first step to generating research that will hopefully go on to support the development of these evidence-based guidelines. Although it is clear there is a gap in the evidence, it is not clear where research priorities lie in this area.
We will aim to assess these priorities and take steps towards building a programme of research investigating ME/CFS and pregnancy, informed by what is most important to people living with the condition.
I live with ME/CFS and have done for the last 13 years. My husband and I recently navigated the extremely difficult decision-making process around whether or not to try to start a family, and how to go about it.
I am now 36 weeks pregnant. I have been extremely lucky with the healthcare I have received and am very grateful for all the support thus far. However, the lack of research in this area, of evidence-based guidelines, and tailored advice with regard to ME/CFS, has become even more apparent as I progressed with my pregnancy.
I am very excited to work with the ME Association and look forward to making a start on this study, when I return from maternity leave in July 2023.
Professor Mark Pearce
As Emma has already said, we are very grateful to the ME Association for awarding this grant. The systematic review that we have been working on has given clear evidence of there being very little evidence.
Given the number of women with ME/CFS that go through pregnancy each year, it is essential that the evidence-base improves drastically, and that it leads to clear clinical guidelines in the future.
I am delighted to be co-leading this work with Emma, with whom I have worked for a few years, once she returns from maternity leave.
Dr Katrina Pears
I have been working with Dr Emma Slack and the team in Newcastle since January, and we have been reviewing the current evidence on pregnancy in ME/CFS. I am very excited that the ME Association has awarded this grant to carry on this work alongside my other research commitments to the charity.
This pilot study is very close to my heart, as I have been through pregnancy with ME/CFS. I always knew that I wanted a family, but it was a very difficult journey. Despite this, I have been very lucky to have now had a full-term healthy pregnancy and to have also experienced a significant improvement in ME/CFS – especially with regard to physical activity. My daughter is now 16 months old and, despite battling ongoing sleepless nights, my health is generally pretty stable, thanks to a lot of careful ‘pacing’.
Throughout my pregnancies, I have experienced a wide range of different attitudes from healthcare professionals and have generally had to advocate for myself and be extremely clear with my wishes, especially with regards to what is best for my ME/CFS. Having first-hand personal experience really highlights the need, to me, for more research in this area, so that others can make informed decisions when it comes to pregnancy.