Women and ME/CFS

Gynaecological Concerns In Women with ME/CFS

ME/CFS affects disproportionately more women than men, with women being 2 to about 4 times more likely than men to acquire the condition (Jason L. A. et al. 1999Reyes, M. et al. 2003 and Phoenixrising.me).

Women with ME/CFS commonly have a bewildering array of symptoms that can occur in every body system, including the reproductive system. Diagnostic confusion sometimes occurs because some symptoms are common to both ME/CFS and gynaecological conditions such as premenstrual syndrome or menopause. These common gynaecological conditions can also cause an exacerbation of ME/CFS symptoms.

The following article on the Fighting Fatigue Website on Gynecological Concerns In ME/CFS Women discusses some of the issues women face.

Some women report hormonal changes pre-date ME/CFS or served as “early warning” symptoms. In 1998 Komaroff and co-workers studied 150 women with ME/CFS who reported gynaecological complications such as irregular cycles, absences of periods (amenorrhoea) and sporadic bleeding between menstrual periods prior to acquiring the illness. Polycystic Ovarian Syndrome (PCOS) was also reported more often in ME/CFS patients than controls. The researchers did not conclude these gynaecological issues cause ME/CFS but they raised the possibility that conditions which lower progesterone, may lower immune function thus leading to future problems.

Unfortunately, most women will report increased gynaecological symptoms upon onset of ME/CFS. In the Chronic Fatigue Treatment Guide 2nd Edition, Dr Rosemary Underhill, a British Gynaecologist, points out that “Gynaecological symptoms in women with ME/CFS should not be assumed to be merely part of the ME/CFS symptomatology. Their investigation and treatment in patients with ME/CFS should follow standard gynaecological practice, and patients will benefit from relief of symptoms.”

We at Emerge Australia would also like to make it very clear that the gynaecological symptoms of ME/CFS are relatively easily treatable and that it is worth persevering with doctors.

A study by the CDC in 2009 showed that women with ME/CFS not only experience more frequent pelvic pain and amenorrhoea, they are also more prone to endometriosis and go through menopause (Reeves W. C. et al. found  approx. 4 years) earlier than controls. Likewise, a study in the US in 2002 found: “hypothyroidismfibromyalgia, chronic fatigue syndrome, autoimmune diseases, allergies and asthma are all significantly more common in women with endometriosis than in women in the general population.”

Interestingly, a number of women with ME/CFS have 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.

The same study by Komaroff and co-workers, of 86 women regarding 252 pregnancies that occurred before or after the onset of ME/CFS, 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.”

A recent journal article published in Medscape Nurses, identified risk indicators for gynaecological issues in women with ME/CFS. Menstrual abnormalities, endometriosis, pelvic pain, hysterectomy, and early/surgical menopause are all associated with ME/CFS.  This article highlights a need for raised awareness amongst clinicians of the association between common gynaecology problems and ME/CFS in women. It is recommended that further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of ME/CFS in some women. The full article can be read on the Medscape website.

Jean Hailes for Women’s Health is a national not-for-profit organisation dedicated to improving the knowledge of women’s health throughout the various stages of their lives, and to provide a trusted world-class health service for women.  The organisations website provides easy access to a valuable source of information and resources for women of all ages on women’s health issues.


Boneva, R. S., et al. “Early Menopause and Other Gynecologic Risk Indicators for Chronic Fatigue Syndrome in Women.” Menopause. 2015, 22(8), 826-834. This work was presented, in part, as a poster at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Conference, Ottawa, Canada, September 2011, and at the Women’s Health Conference, Washington, DC, March 21 to 24, 2013.

Boneva, R. S., et al. “Gynecological history in chronic fatigue syndrome a population-based case-control study.” J Womens Health (Larchmt), 2011, 20(1): 21-28.

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.

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.

Reyes, M., et al. “Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas.” Arch Intern Med, 2003, 163(13): 1530-1536.

Sinaii, N., et al. “High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis.” Hum Reprod, 2002, 17(10): 2715-2724

Jason, L. A., et al. “A community-based study of chronic fatigue syndrome.” Arch Intern Med, 1999, 159(18): 2129-2137.

Harlow, B. L., et al. “Reproductive correlates of chronic fatigue syndrome.” Am J Med, 1998, 105(3A): 94S-99S.