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Study highlights need for more research to support the care of women with chronic fatigue syndrome, around the time of pregnancy.

A new study published in BMJ Open has highlighted the lack of evidence available around Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and pregnancy, and has called for more high-quality research in the area.

Myalgic Encephalomyelitis (ME) – sometimes called Chronic Fatigue Syndrome (CFS) – is a fluctuating, and complex long-term condition characterised by debilitating fatigue, worsening of symptoms following activity, unrefreshing sleep and cognitive difficulties.

Read more about ME/CFS

ME/CFS is not only more common in women than men, but compared with men, women have been found to experience more symptoms and co-occurring conditions, and more difficulty performing everyday tasks.

What do we know about ME/CFS and pregnancy?

There is very little evidence about ME/CFS and pregnancy.

Existing research has found that women with ME/CFS who are of childbearing age are concerned about the effects that pregnancy might have on themselves and their infant.

Some of the evidence so far highlights that pregnancy can be a difficult decision for people with ME/CFS. It also underlines the importance of individualised care, and how important it is for healthcare professionals to understand more about ME/CFS in relation to family planning and pregnancy.

This low level of evidence means that there are currently no evidence-based guidelines for management of ME/CFS and pregnancy.

As a result, those with ME/CFS, their partners and healthcare professionals are unable to make informed, evidence-based decisions around family planning, pregnancy, labour and birth.

However, there was insufficient evidence to draw firm conclusions about key questions relating to risk of adverse birth outcomes, and the effect of pregnancy on ME/CFS severity.

The work has been led by Dr Emma Slack from Newcastle University and supported by Professor Judith Rankin from Newcastle University, who is the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) theme lead for Supporting Children and Families. It was funded by a grant from the Newcastle upon Tyne Hospitals NHS Charity.

‘More high quality research is needed’

Dr Emma Slack said: “Our work highlights the huge gap in the evidence relating to ME/CFS and pregnancy, labour and birth. It also shows the impact the disease has on family planning, and raising children, both for the person living with ME/CFS, but also their partners, and often wider support network.

“It is clear from our findings that more high quality research is needed, considering all aspects of pregnancy and ME/CFS for patients and healthcare professionals, but specifically exploring what would constitute high-quality care for those with ME/CFS in pregnancy and family planning.”

The research team have been awarded funding from the ME Association to carry out a pilot study which aims to begin to identify key research questions for people with ME/CFS, and their partners, around pregnancy, including thinking about planning a family and raising children.

Dr Slack added: “The results of the review support our current work, funded by the ME Association, which aims to begin to identify key research questions for people with ME/CFS, and their partners, around pregnancy, including thinking about planning a family and raising children.”

The pilot study started in July 2023 and will take two years to complete. The team hopes that the findings from the pilot study will inform future research which will provide robust evidence to:

• Support people with ME/CFS, and their partners, to make informed decisions around family planning, pregnancy, labour, birth, and raising children.
• Inform the development of guidelines to better support health care professionals in practice.

Read the full research paper: Identifying, synthesising and appraising existing evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review. BMJ Open, October 2023