Implications of ME/CFS for Women of Childbearing Age

Thanks to Schizmu for including this post as part of their blog carnival.

I thought this information from the Journal of Midwifery & Women’s Health article on ME/CFS, pregnancy and childbirth was really important to post because we don’t see a lot of crucial articles and information on this.

Howmany ME/CFS women out there have decided to not have children because there was never any information available on how pregnancy and childbirth would effect our illness? How many of us haven’t been able to have more than one child because we don’t know what the repeated physical strain will do to our bodies?

The author of the 12-page guide Chronic Fatigue Syndrome: Implications for Women and their Health Care Providers During the Childbearing Years is Peggy Rosati Allen, MS, WHNP, CNM, a Clinical Instructor in the graduate Nurse-Midwifery and Womens Health Nurse Practitioner programs at the University of Utah College of Nursing. The guide:

• Concisely summarizes the conclusions of more than 60 studies by respected researchers, addressing ME/CFS etiology, markers, symptoms, co-existing conditions, diagnosis by exclusion (tests, evaluation flow chart), treatment options, and future directions.

• Reports the limited available data on the experiences of women with ME/CFS who anticipate or experience pregnancy.

• Presents expert findings and opinions on the optimal management of health issues unique to these women. This guidance is based on information shared by well-known clinicians in the U.S. who specialize in treatment of ME/CFS and fibromyalgia. Among them, Drs. Lucinda Bateman, Nancy Klimas and Charles Lapp.

As Allen notes in the introduction, most women with ME/CFS who consider pregnancy are concerned about the possible health consequences for them and their children. But most healthcare providers arent conversant with the current evidence regarding ME/CFS and very little information is yet available on the pregnancy, childbirth, and postpartum experiences of women with this illness. Even the reports of the expert clinicians are based on relatively small numbers of women whom they have followed throughout pregnancy.

Some of the highlights of the guide state that:

• Very preliminary research shows that ME/CFS may be associated with reduced fertility. “Polycystic ovarian syndrome (cysts on the ovaries) is more frequent, and dysmenorrhea (painful periods/cramps) is almost universal. Dysmenorrhea is commonly associated with endometriosis (an overgrowth of tissue lining the uterus; known for interfering with fertility).”
• Women who are trying to become pregnant or who are breastfeeding will most likely need to stop taking medications used to treat their ME/CFS.
• “The largest study of childbearing-age ME/CFS patients (86 women, representing 252 pregnancies before and after illness onset), by Drs. Richard Schacterle and Anthony Komaroff at Harvard Medical School, found that of the women who already had ME/CFS, 41% reported no change in their symptoms during pregnancy and 30% improved, while 29% worsened. The researchers couldnt pinpoint the factors associated with these differences.”
• First trimesterspontaneous miscarriages may be more frequent for ME/CFS mothers than for normal mothers.
• “Dr. Klimas reports improvement and in some cases total remission of symptoms during all of the 20 ME/CFS pregnancies she has managed (albeit sometimes with more severe than normal early nausea). Dr. Bateman says all of the 6 pregnancies she has observed felt less ill, and Dr. Lapp reports 25 of his 27 pregnant ME/CFS patients felt better. He suggests this may be associated with immune and hormonal changes during pregnancy.”
• One in five (21% of women in the Schacterle/Komaroff survey) said they had chosen to avoid a first pregnancy or additional pregnancies for fear they would be too disabled for proper child care.
• Although there is strong evidence that ME/CFS is associated with a genetic predisposition, so far theres no evidence of direct maternal ME/CFS transmission to the fetus.
• Dr. Klimas reports that her patients tend to do well for 3 to 6 months post-partum and then have a relapse of symptoms that can be severe. She suspects the delay reflects a reduction in the volume of red blood cells, which increased during pregnancy. Dr. Lapp has seen a similar worsening in about one-third of his new mothers. And Dr. Bateman says the risk of postpartum relapse is the most important issue to address with ME/CFS patients consideringpregnancy. (All agree post-partum sleep disruption and hormonal changes likely play a role.)

The American College of Nurse-Midwives released this statement about ME/CFS and childbirth:

Although the interaction between CFS and pregnancy, childbirth, and the postpartum period is not yet scientifically elucidated, evidence indicates that midwives are ideally suited to provide the type of perinatal care that is most conducive to a positive childbirth experience for women with CFS.

To read more, click here.