The faMEly study: A Study of ME/CFS, Family Planning, Pregnancy and Raising Children, has reached the end of its initial funding period and Stage II funding has now been granted by the ME Association.
The initial study began in January 2023 following a literature review by the team (Slack et al., 2022), which showed there is very little published research exploring reproductive health in ME/CFS.
Study Aims
The faMEly study has highlighted research priorities for people with ME/CFS who have experience of family planning, pregnancy and the raising of young children. It has explored experiences, attitudes, knowledge, perceptions, and family planning decision-making processes. To gather the data, an online questionnaire was issued and interviews held that each covered this broad range of pregnancy-related topics.
Key Findings
The online questionnaire was completed by three hundred and forty people with ME/CFS. 44% had never been pregnant, 23% had been diagnosed with ME/CFS after their pregnancy, and 23% were diagnosed prior to pregnancy. 3% of respondents were currently pregnant and 7% were men with ME/CFS.
There was a good age range, experience of illness severity, and pregnancy-related factors between respondents. Most participants were white, so the results may not reflect the wider ethnic mix of people with ME/CFS.
Participants said that during pregnancy, they had little NHS ME/CFS-specific support but generally rated the care they did receive positively. An improvement in ME/CFS illness severity during pregnancy was the strongest predictor of better experience ratings, and worsening symptoms predicted poorer ratings.
Thirteen women took part in an interview to explore their experiences in greater depth. All but one of them identified themselves as White British, three women reported having mild ME/CFS and ten reported having moderate ME/CFS.
Five recurring themes were identified from what the women said, ‘knowledge and uncertainties’, ‘attitudes and stigma’, ‘practicalities, support and choices’, ‘concerns and guilt’ and ‘advice for others’.
The women said they were disappointed because the lack of knowledge about ME/CFS, pregnancy, and raising young children had meant they could not make informed decisions. Those who were pregnant talked about uncertainties and ‘guesswork’ as to how they might feel and cope.
Many felt frustrated by the lack of knowledge and understanding, and the dismissive attitude towards ME/CFS, exhibited by some healthcare professionals.
Little or no extra support was put in place during the pregnancy, birth and post-natal periods to help women cope with ME/CFS. If women wanted support beyond their partner, family and friends they had to pay for it, for example, with private childcare.
Some of the women said they would have liked a bigger family but had come to terms with the fact this was not possible. Others felt guilty for relying on more help from family or not being able to do as much with their babies as other mothers could.
Many of the women interviewed shared the view that ME/CFS did not, in their experience, have to rule out having children for those who wanted to pursue it. However, they should ensure there was lots of support in place throughout the period of pregnancy and after the baby had been born.
They felt that more research was needed regarding the impact of pregnancy on ME/CFS and that healthcare professionals needed more knowledge, awareness and an improved attitude towards women with ME/CFS who were trying to become pregnant, who were pregnant, or who were trying to raise young children.
Next Steps
The pilot study had been successful and collected significantly more data than had originally been expected, and, unfortunately, there had been unavoidable delays due to staffing. Despite two no-cost extensions, the remaining team had not been able to process all the data and extrapolate the key findings into a publication by the agreed deadlines.
The MEA considers this research to be important and has decided to support a costed extension with Dr Mark Pearce and his team. Additional funding of £27,268 has been granted and Stage II will be completed by late spring 2027. Funding will commence with the recruitment of a PhD research associate, who will complete a deeper analysis of the data. The plan is to publish four papers from the qualitative data, and this will include a paper on pregnancy and family planning, and another on infant feeding.
Further Information
- The faMEly study: A Study of ME/CFS, Family Planning, Pregnancy and Raising Children – A Pilot Study
- The ME Association: Pregnancy Study: Would you like to take part? | June 14, 2024
- Research: A Systematic Review of Pregnancy and ME/CFS | October 6, 2023
- Slack, E et al. (2023) Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review. BMJ Open 2023; 13: e070366.
- Announcement: The ME Association funds new study examining pregnancy in ME/CFS | July 15, 2022
- The ME Association: Literature: Pregnancy & Childbirth