An Ongoing Tragedy: Women with ME/CFS, Their Infertility, Miscarriages & Babies Born with Learning Disabilities
When will someone really care about these women's inability to have healthy babies?
On Twitter and other social media platforms, ME/CFS patients mourn the loss of their hopes and dreams, their “normal” lives and their hoped-for futures. People who become ill in childhood or in their teens often miss what the rest of us consider to be major life milestones, including completing an education. Women who contract ME/CFS in their early 20s or 30s (or before) often face another loss: the inability to become pregnant and carry a healthy child to term.
The September 2022 issue of the Journal of Epidemiol. Community Health (a British Medical Journal publication) featured a review of the latest findings of how ME/CFS affects pregnancy. Not surprisingly, it’s not a positive outcome. Also not surprisingly, there’s little that is new.
Dr. Mark Pierce and associates from Population Health Sciences Institute at Newcastle University (Newcastle upon Tyne, UK), along with a colleague from The ME Association in Bristol (UK), looked at the outcome of pregnancies among ME/CFS patients as well as the effects of pregnancy on the symptoms of ME/CFS. (1)
In this review, the investigators searched for all studies on the subject published in English in seven electronic databases. They found only five studies that examined pregnancy in ME/CFS, and there were mixed results: some women reported no effects on their ME/CFS, some reported that symptoms worsened, and in one study, ME/CFS symptoms improved during pregnancy. (Pregnant multiple sclerosis patients also find their symptoms sometimes improve. [2]) Additionally, these British researchers identified an increased rate of miscarriage among women with ME/CFS. (1)
One of the five studies followed pregnant women with ME/CFS until they gave birth. Their babies had a higher-than-normal rate of learning and developmental delays.
Like others before them, these British researchers concluded that the findings were inconsistent and called for further research. (1)
One of those previous studies was published in 2004, when Richard Schacterle and Anthony Komaroff at the Brigham and Women’s Hospital (Boston, MA) studied the outcomes of 252 pregnancies in 86 women; some became pregnant after developing ME/CFS and some before. (3)
Schacterle and Komaroff examined the effects of pregnancy on the ME/CFS symptoms experienced by 70 women who were diagnosed before they became pregnant: 41% of the 70 had no change in symptoms, 30% experienced an improvement in symptoms and in 20%, symptoms worsened. After pregnancy, 30% of these 70 women had no change in their ME/CFS symptoms, 20% experienced an improvement of symptoms and in 20%, symptoms worsened.
“There was a higher frequency of spontaneous abortions in the pregnancies occurring after, vs. before, the onset of CFS (22 [30%] of 73 pregnancies after vs. 13 [8%] of 171 before; P<.001), but no differences in the rates of other complications,” Schacterle and Komaroff report. “Developmental delays or learning disabilities were reported more often in the offspring of women who became pregnant after, vs. before, the onset of CFS (9 [21%] of 43 children vs 11 [8%] of 139 children; P =.01).” (3)
To put it more simply: 30% of women with ME/CFS had miscarriages, compared to 8% of women who were healthy when they became pregnant; 21% of the babies born to ME/CFS patients had developmental delays and/or learning disabilities, as opposed to 8% of babies born to healthy women.
Schacterle and Komaroff suggest that the developmental delays and learning disabilities among babies born to women with ME/CFS “should be investigated by larger, prospective studies with control populations.” They don’t outline a plan to do so. (3)
Studies of fertility and pregnancy in ME/CFS patients have been conducted for at least 30 years—and despite the advances in technology, current results are not much more illuminating, as can be seen from The Lancet’s 2022 review article.
One common cause of miscarriage and even infertility is endometriosis. It’s a painful condition in which the tissue lining the inside of the uterus (the endometrium) migrates to other areas, causing endometriosis. This tissue can travel to any location in the body once endometriosis begins but is most often found on the surfaces of structures nearest the entrance to the uterus: the bowel, bladder, fallopian tubes, ovaries, the outer surface of the uterus, and the surfaces of supporting tissues (muscles and connective tissue). Endometriosis appears to occur at much higher rates in women with ME/CFS than it does in otherwise healthy women. The cause(s) of endometriosis are unknown.
In 1993, I interviewed Dr. Perry Orens, a Long Island (NY) physician who had many ME/CFS patients in his practice at that time. He believed that an as-yet-unidentified hormonal component is responsible for the increased rate of endometriosis among women with ME/CFS. This hormonal imbalance, Dr. Orens suggested, might explain why more women than men have—or at least are diagnosed with—ME/CFS. Other researchers have reported that as many as 30% of female ME/CFS patients have endometriosis. (4)
What causes all these problems in pregnant women with ME/CFS? A virus that’s active in both ME/CFS and AIDS patients, Human Herpes Virus 6 (HHV-6), has been linked to miscarriage by Japanese scientists.
In 1992, a research team from Japan’s Nara Medical University studied 30 women who miscarried early in pregnancy, at six to 12 weeks. When tissue from the miscarriages was examined, they were found to contain HHV-6 antibodies that were four times higher than those in pregnant women who didn’t miscarry. In a November 1992 report published in The Lancet, this research team suggested that an active HHV-6 infection “may predispose” to miscarriage in pregnant women. (5)
For the last 30 years, physicians and researchers have documented the fact that women with ME/CFS have higher-than-normal rates of endometriosis, miscarriage, and babies born with developmental delays and learning disabilities. When is a serious study, complete with control groups—as suggested by Schacterle and Komaroff, who himself has studied ME/CFS for more than 20 years—going to be done? In another decade, or two, or three?
Of everything that women with ME/CFS lose, one of the most heartbreaking is the ability to have a healthy child. Why doesn’t anyone care?
BIBLIOGRAPHY
1. Pearce M, Slack E, Pears K, et al OP72 ”Myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review.” J Epidemiol Community Health 2022;76:A35. http://dx.doi.org/10.1136/jech-2022-SSMabstracts.71
2. “Multiple Sclerosis and Pregnancy”; Johns Hopkins Medicine 2022; johnshopkins.org
3. Richard S Schacterle, Anthony L Komaroff; “A comparison of pregnancies that occur before and after the onset of chronic fatigue syndrome”; Arch Intern Med 2004; Feb 23;164(4):401-4. doi: 10.1001/archinte.164.4.401.
4. Ostrom, Neenyah. Chapter Twenty-five: “Endometriosis Seems to be Common in Women with CFS.” In America’s Biggest Cover-Up: 50 More Things Everyone Should Know About the Chronic Fatigue Syndrome Epidemic and Its Link to AIDS. Updated 2nd Second Edition. Originally published by TNM, Inc., P.O. Box 1475, Church Street Station, New York, NY 10008, 1993. Second Edition available from Amazon in Kindle and paperback versions, 2022.
5. Ostrom, Neenyah. Chapter Five: “A Virus Found Growing in CFS Patients Has Been Linked to Miscarriage.” In America’s Biggest Cover-Up: 50 More Things Everyone Should Know About the Chronic Fatigue Syndrome Epidemic and Its Link to AIDS. Updated 2nd Second Edition. Originally published by TNM, Inc., P.O. Box 1475, Church Street Station, New York, NY 10008, 1993. Second Edition available from Amazon in Kindle and paperback versions, 2022.