July 11, 2008
The July 2008 issue of the Journal of Midwifery & Women’s Health offers an outstanding guide for female ME/CFS patients and their healthcare teams – on pregnancy-related issues from preconception to postpartum support (“Chronic Fatigue Syndrome: Implications for Women and their Health Care Providers During the Childbearing Years”). More broadly, though, the guide begins with an excellent, fact-based summary of the science on chronic fatigue syndrome (ME/CFS).
The author, Peggy Rosati Allen, MS, WHNP, CNM, is a Clinical Instructor in the graduate Nurse-Midwifery and Women’s Health Nurse Practitioner programs at the University of Utah College of Nursing. The full text of her Guide has been posted for free access on the Co-Cure listserv.
OVERVIEW & SUMMARY OF KEY POINTS
In this dense 12-page resource for women with ME/CFS, Allen:
n 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.
n Reports the limited available data on the experiences of women with ME/CFS who anticipate or experience pregnancy.
n Presents expert findings and opinions on 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.
Background
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 aren’t 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 Key Points
n Very preliminary research indicates 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).
n Women who plan to become pregnant and/or breast feed should be advised that they must discontinue certain drugs often prescribed for ME/CFS symptoms, including some for ME/CFS-related orthostatic intolerance. (A common symptom that involves dysregulated heart rate and blood pressure response and a range of symptoms such as weakness when one rises to an upright position.)
n 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 couldn’t pinpoint the factors associated with these differences.
n Another finding was that maternal and infant outcomes of pregnancies after ME/CFS onset were not “systematically” worse than those before – although, subject to further investigation, first trimester spontaneous miscarriages may be more frequent than for normal mothers.
n Additionally, 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.
n Guidance is important to help ensure that stress and exertion will be minimized during pregnancy, including recognition of a need for help with or reduction of home, childcare, or employment responsibilities. (ME/CFS is typified by relapses or “flairs” subsequent to exertion beyond tolerable levels.)
n There have been no studies of changes in orthostatic intolerance during pregnancy, though the increased blood volume associated with pregnancy may reduce symptoms; and compression stockings and “pushing” oral fluids may be helpful.
n During labor, a particular emphasis on hydration to avoid fatigue, and avoidance of “vasodilating” heated baths or showers are advised. The usual encouragement of walking and position changes to stimulate labor should likely be moderated to conserve energy.
n When labor is prolonged, epidural anesthesia may be advisable to reduce physical stress. But the advisability of elective Cesarean for this purpose “is highly debatable.”
n Lower birth weight was not identified in offspring of women giving birth after becoming ill, according to Schacterle & Komaroff, though developmental delays were reported more often. One thought is that this may be associated with the hypocortisolism common with ME/CFS. (Discussed in "Chronic Fatigue Syndrome, Pregnancy, and Addison Disease" by Riccardo Bashetti, MD.) Hypocortisolism involves reduced levels of cortisol, referred to as the “stress response” hormone.
n Although there is strong evidence that ME/CFS is associated with a genetic predisposition, so far there’s no evidence of direct maternal ME/CFS transmission to the fetus.
n 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.
n As for post-partum relapse, there are no data, but Drs. Bateman, Klimas, and Lapp all agree a prolonged and painful labor might well increase the risk, given the “well-documented” tendency to crash in response to stress and exhaustion among ME/CFS patients in general.
n Again, “anticipatory guidance” is recommended to support post-partum energy conservation – including perhaps a home health nurse referral to assess and advise on the types of support the mother will require once at home.
n 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 considering pregnancy. (All agree post-partum sleep disruption and hormonal changes likely play a role.)
n No research is available on the relationship between breastfeeding and relapse. And the impact of ME/CFS on milk supply hasn’t been studied, though an effect is possible given some evidence that the illness affects pituitary function.
n Dr. Lapp has suggested the possibility – though remote - that a subset of patients believed to have ME/CFS induced by viral infection might transmit the virus via breast milk, but no information is available.
Overall, women’s healthcare providers have a strong responsibility for guiding and supporting female ME/CFS patients anticipating pregnancy – and the numbers of these cases will only grow as awareness of the illness increases and ability to diagnose it improves.
The author of “Chronic Fatigue Syndrome: Implications for Women and their Health Care Providers During the Childbearing Years,” Peggy Rosati Allen, MS, WHNP, CNM, may be reached at
peggy.allen@nurs.utah.edu.
The Journal of Midwifery & Women’s Health is a publication of the American College of Nurse-Midwives (ACNM). According to an ACNM statement regarding this article, “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.” The Guide won a "best of 2008" award from the publisher in August 2009.
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Note: This information has not been evaluated by the FDA. It is generic and is not intended to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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