Motherhood And ME/CFS
As two to four times as many women as men are affected by ME/CFS and most of them are in their childbearing years, many of them will have to make that difficult decision as to whether or not to have a child, while waiting to recover.
Deciding when to have one to fit in with one’s career (if one still has a career with a debilitating chronic illness), and other life stressors can be very emotionally, financially and physically challenging. Worries about the pregnancy and the future care of the child are always at the front of one’s mind.
The State of Research
Unfortunately, there has been minimal research on the subject of the effects and risks of pregnancy, childbirth and the postpartum period on women with ME/CFS. The questions of, whether or not the course of ME/CFS changes during or as a result of pregnancy, or whether or not the experience of pregnancy and childbirth is different for women with ME/CFS, have yet to be definitively answered.
The most detailed study to date by Schacterle and Komaroff in 2004, of 86 women regarding 252 pregnancies that occurred before or after the onset of ME/CFS, found, interestingly, a number of women with ME/CFS reported a complete cessation of their symptoms during pregnancy (approximately a third improve, a third get worse and about 40% feel no change). The results after pregnancy are similar, if a little lower percentages (about 20%) for those that improve and those that get worse. Some physicians have suggested that the sudden increase in pregnancy-related hormones are most likely responsible for recovery in these cases. However they were unable to identify the factors which influence whether a particular woman will recover or worsen during pregnancy.
The same study, found that the rate of miscarriages (termed spontaneous abortions in the scientific literature) was higher for pregnancies occurring after vs. before ME/CFS (30% vs. 8%), but no differences in rates of other complications. Developmental delays or learning disabilities were reported more often (21 % vs. 8%) in the offspring of women who became pregnant after vs. before ME/CFS. However they concluded: “Pregnancy did not consistently worsen the symptoms of ME/CFS. Most maternal and infant outcomes were not systematically worse in pregnancies occurring after the onset of ME/CFS. The higher rates of spontaneous abortions and of developmental delays in offspring that we observed could be explained by maternal age or parity differences, and should be investigated by larger, prospective studies with control populations.”
To unpick that, the women having children after their diagnosis of ME/CFS were of course older than they were when they had their child before they had ME/CFS. This could explain the rates of miscarriage and developmental delays, hence the need for studies with larger sample sizes and control groups.
Peggy Allen (Assistant Clinical Professor in the University of Utah College of Nursing) has published a paper “Chronic fatigue syndrome: implications for women and their health care providers during the childbearing years.” Also here is a pdf of a PowerPoint presentation by the author. The abstract states:
“There has been little scientific exploration about the experience of pregnancy, childbirth, and the postpartum period for women with this disorder. A review of the literature and current research findings addressing the epidemiology, diagnosis, symptoms, and treatment of chronic fatigue syndrome are presented, as well as the currently available data regarding the experience of women with chronic fatigue syndrome anticipating or experiencing pregnancy and the postpartum period. Expert opinion is presented along with current evidence to provide guidelines for the care of women with chronic fatigue syndrome during pregnancy, labour and birth, lactation, and the postpartum period.”
Peggy Allen includes the following topics:
Effects of Pregnancy on Chronic Fatigue Syndrome
The most comprehensive study to date is that by Schacterle and Komaroff (see above) regarding about a third of women recovering during pregnancy. ME/CFS clinicians Nancy Klimas, Lucinda Bateman, and Charles Lapp report slightly different findings in clinical practice. They report in groups of 6 to 27 women followed during pregnancy, most reported feeling improvements in their ME/CFS symptoms for instance in Dr Klimas’ group of 20 women to the point of remission. However those typically suffered more severe nausea and vomiting during early pregnancy requiring antiemetics used during chemotherapy.
Effects of Chronic Fatigue Syndrome on Pregnancy
ME/CFS impacted the decision of whether or not to bear children in 21% of Schacterle and Komaroff’s survey respondents, in either choosing not to parent or not to have additional children. The most common reason was the disability caused by ME/CFS would affect parenting ability. ME/CFS may adversely affect fertility, although research in this area is very preliminary. Polycystic Ovarian Syndrome (PCOS), dysmenorrhea, and endometriosis have all been found to be more common in women with ME/CFS. Schacterle and Komaroff found that the rate of first trimester spontaneous miscarriage was 4 times higher than normal in women with ME/CFS. However they point out confounding factors such as the age of the mothers may be responsible for these findings and that further investigations are needed to follow up.
The Authors found no evidence for other pregnancy complications to be higher than non ME/CFS women. While there is compelling scientific evidence for a genetic predisposition to ME/CFS, there is no evidence that a pregnant woman can directly transmit ME/CFS to her foetus. The same study found that developmental delays were reported more often in offspring of women who became pregnant after the onset of ME/CFS vs before. Baschetti has hypothesized that the hypocortisolism that occurs with ME/CFS and the role of maternal cortisol secretion in foetal growth and development is an explanation for this increased rate of developmental delays, although Schacterle and Komaroff are careful to note that their finding needs validation by larger, prospective studies with larger sample sizes and control populations.
Reciprocal Effects of Chronic Fatigue Syndrome and Labour and Birth
There has been no research addressing whether ME/CFS affects labour and birth or whether labour and birth affects ME/CFS. However, one could infer based on the well documented physiologic response to stress in people with ME/CFS that a prolonged and more painful labour increases the risk of relapse for a woman with ME/CFS.
Postpartum Recovery with Chronic Fatigue Syndrome
Schacterle and Komaroff found that 50% of patients surveyed reported worsening of CFS symptoms, 30% reported no change, and 20% reported improvement during the postpartum period. Some women experience relapses months after birth. Dr. Klimas observed that her patients with ME/CFS typically do well until 3 to 6 months after delivery, at which time a relapse in ME/CFS symptoms typically occurs, and is often severe. Dr. Klimas and Dr. Bateman hypothesize that hormonal changes combined with the physical and emotional demands of caring for an infant, particularly sleep disruption are responsible for relapses in women with ME/CFS.
Medications for Chronic Fatigue Syndrome During Pregnancy and Lactation
Women with ME/CFS who become pregnant and breastfeed their infants should be prepared to discontinue some of the medications commonly prescribed for ME/CFS symptom relief. Midodrine (Proamatine) is not recommended. Fludrocortisone (Florinef) is thought to be theoretically safe because of its similarity to cortisone. Other medications should be considered on a case-by-case basis.
The article concludes in part: “Although the interaction between ME/CFS and pregnancy, childbirth, and the postpartum period is not yet scientifically elucidated, evidence indicates that the midwife is ideally suited to provide the type of perinatal care that is most conducive to a positive childbirth experience for women with ME/CFS”
Fatherhood And ME/CFS
An article by Dr Charles Shepherd on the UK site ME/CFS Parents titled Pregnancy And ME/CFS is subtitled “Starting or increasing the size of a family is always a major step for any couple. But when the female partner also has ME/CFS, it is a move which obviously requires a great deal of careful thought and planning”. It also mentions the scenario of when the male partner is the one with ME/CFS.
Parent(s) With ME/CFS Bringing Up Children
Whether you are a opposite sex couple, single parent or same sex couple, there has been scant research done on the effect on the children where one or more of the parents has ME/CFS. What has been done includes a study by Dr Niloofar Afari and co-workers of adolescent offspring of mothers with ME/CFS to determine whether they reported higher prevalence of ME/CFS or more fatigue, greater pain sensitivity, more sleep problems, and poorer cardiopulmonary fitness than those with mothers without ME/CFS.
They found: “Compared to offspring of healthy mothers, those who were exposed to mothers with ME/CFS reported higher prevalence of fatigue of at least one month duration (23% versus 4%), fatigue of 6 months or longer (15% versus 2%), and met criteria for ME/CFS (12% versus 2%), although these differences only approached statistical significance. ME/CFS and healthy mothers differed on almost all study outcomes, but offspring groups did not differ on measures of current fatigue severity, pain sensitivity, sleep, mean number of tender points, and cardiopulmonary fitness.”
Genetics And ME/CFS: Is The Illness Heritable?
The role of genetic predisposition in ME/CFS has been and remains controversial. Genetic studies of identical (monozygotic) and non-identical (dizygotic) twins () and subsequent papers () have reported that genetic factors do play a part and that there is growing evidence that heritability contributes to one’s risk of developing ME/CFS. However, there is little agreement on the genes involved or the environmental factors at play.
Factsheets and other Websites
- Deciding to Have a Child for Women with ME/CFS
- The Effect of Pregnancy on ME/CFS
- The Effect of Maternal ME/CFS on the Child
- The Effect of ME/CFS on Pregnancy
- The Effect of ME/CFS on Labor and Delivery
- The Effect of ME/CFS after Delivery
- ME/CFS and Breast Feeding
- Coping with Child Rearing
The UK site Action for ME has a page called Mums and Dads with M.E. – it contains links to other pages on: deciding to have a child, pregnancy and childbirth, breastfeeding, and being a parent. They include real accounts of women with ME/CFS.
The Bateman Horne Center in Utah USA has a page on Pregnancy and ME/CFS.
Albright, F., et al. “Evidence for a heritable predisposition to Chronic Fatigue Syndrome.” BMC Neurol, 2011, 11: 62.
Smith, M. S., et al. “Adolescent offspring of mothers with chronic fatigue syndrome.” J Adolesc Health, 2010, 46(3): 284-291.
Allen, P. R. “Chronic fatigue syndrome: implications for women and their health care providers during the childbearing years.” J Midwifery Womens Health, 2008, 53(4): 289-301.
Crawley, E. and S. G. Davey. “Is chronic fatigue syndrome (CFS/ME) heritable in children, and if so, why does it matter?” Arch Dis Child, 2007, 92(12): 1058-1061.
Schur, E., et al. “Twin analyses of fatigue.” Twin Res Hum Genet, 2007, 10(5): 729-733.
Schacterle, R. S. and A. L. Komaroff. “A comparison of pregnancies that occur before and after the onset of chronic fatigue syndrome.” Arch Intern Med, 2004, 164(4): 401-404.
Baschetti, R. “Chronic fatigue syndrome, pregnancy, and Addison disease.” Arch Intern Med, 2004, 164(18): 2065.
Hickie, I. B., et al. “A twin study of the etiology of prolonged fatigue and immune activation.” Twin Res, 2001, 4(2): 94-102.