OP72 Myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review 2022, Pearce et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Abstract
Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a fluctuating complex condition. More common in women than men, it tends to develop between mid-20s and mid-40s, including the main childbearing age (15–45 years). There are currently no systematic reviews summarising evidence relating to ME/CFS and pregnancy. The lack of quality assessed, and systematic summary evidence makes it harder for people with ME/CFS to make informed decisions about pregnancy, and harder for health care professionals to offer evidence-based care. This mixed methods systematic review aims to examine and summarise existing evidence relating to ME/CFS and pregnancy, both in relation to pregnancy outcomes and experiences of pregnancy but also the effect of pregnancy on ME/CFS severity and symptoms.

Methods This review followed a convergent segregated design. Seven electronic databases, relevant grey literature, reference lists of relevant reviews, and reference lists and citations of all included studies, were searched. Where necessary, authors were contacted for additional information. Studies of any design published in English, reporting on ME/CFS and pregnancy/postpartum (up to two years), risk of pregnancy outcomes with ME/CFS, or experiences during pregnancy for mother, partner or health and social care professionals following pregnancy with ME/CFS were included. Three researchers performed screening, data extraction and quality assessments independently. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses, respectively (meta-analysis was not appropriate). Findings were integrated through configuration.

Results Searches identified n=2,789 studies, n=10 met our inclusion criteria. There were five quantitative studies, two qualitative studies and three pieces of grey literature. Preliminary results suggest that evidence is conflicting. In the qualitative literature, one study suggested one participant thought pregnancy improved ME/CFS symptoms while the other noted a participant commented that ME/CFS may have adversely affected her pregnancy. Of the four quantitative studies that reported on ME severity during pregnancy, two suggested pregnancy negatively impacted on ME/CFS, one study found most women had no change in ME/CFS symptoms during pregnancy, and one found ME/CFS improved during pregnancy. Only one study reported on pregnancy outcomes, finding a higher rate of spontaneous abortions, and increased developmental and learning delays in infants born to mothers with ME/CFS.

Conclusion Current evidence on ME/CFS in pregnancy is limited, and findings are inconsistent. Studies are limited by small sample size and currently, there is no UK evidence. More high-quality research into ME/CFS and pregnancy is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.

OP72 Myalgic encephalomyelitis/chronic fatigue syndrome and pregnancy: a mixed-methods systematic review | Journal of Epidemiology & Community Health (bmj.com)
 
article about the paper
An Ongoing Tragedy: Women with ME/CFS, Their Infertility, Miscarriages & Babies Born with Learning Disabilities

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.
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An Ongoing Tragedy: Women with ME/CFS, Their Infertility, Miscarriages & Babies Born with Learning Disabilities (substack.com)
 
This seems to be the 'one' study that looked reported pregnancy outcomes: chronic fatigue syndrome and pregnancy

https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/216675

A Comparison of Pregnancies That Occur Before and After the Onset of Chronic Fatigue Syndrome
2004
Richard S. Schacterle, PhD; Anthony L. Komaroff, MD


"Abstract

Background Many women with chronic fatigue syndrome (CFS) fear that pregnancy will worsen their condition, increase the risks of maternal complications of pregnancy, or threaten the health of their offspring. Little empirical evidence, however, has been published on this matter.

Methods A detailed questionnaire was administered to 86 women regarding 252 pregnancies that occurred before or after the onset of CFS and the outcomes of these pregnancies were observed.

Results During pregnancy, there was no change in CFS symptoms in 29 (41%), an improvement of symptoms in 21 (30%), and a worsening of symptoms in 20 (29%) of 70 subjects. After pregnancy, there was no change in CFS symptoms in 21 (30%), an improvement of symptoms in 14 (20%), and a worsening of symptoms in 35 (20%) of the subjects. The rates of many complications were similar in pregnancies occurring before the onset and in those occurring after the onset of CFS. 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. 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).

Conclusions Pregnancy did not consistently worsen the symptoms of CFS. Most maternal and infant outcomes were not systematically worse in pregnancies occurring after the onset of 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."

Full paper at link.

The unqualified comment in the Pearce et al paper's abstract "finding a higher rate of spontaneous abortions, and increased developmental and learning delays in infants born to mothers with ME/CFS." seems unwarranted given Schacterle and Komaroff's paper says:

"Many women were afraid that their offspring would also be adversely affected, but there was little evidence that this happened. Although there was a higher reported rate of developmental delays and learning disabilities when pregnancies occurred after the onset of CFS, that difference could be explained by confounders such as the older age of women.

There also was little evidence that the rates of various maternal complications during pregnancy, or outcomes of the pregnancy, were different in pregnancies that occurred following the onset of CFS compared with those that occurred before. One exception was the significantly greater number of spontaneous abortions in the pregnancies that occurred after the onset of CFS. This difference also could be explained by confounding, particularly by age or parity. We compared rates of spontaneous abortions in patients with CFS of different age and parity (nulliparous vs multiparous) with rates in a population-based Danish survey of 1 221 546 pregnancy outcomes,5 and did not find clearly higher rates in our patients."





 
CRG said:
This seems to be the 'one' study that looked reported pregnancy outcomes: chronic fatigue syndrome and pregnancy

https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/216675


Results During pregnancy, there was no change in CFS symptoms in 29 (41%), an improvement of symptoms in 21 (30%), and a worsening of symptoms in 20 (29%) of 70 subjects. After pregnancy, there was no change in CFS symptoms in 21 (30%), an improvement of symptoms in 14 (20%), and a worsening of symptoms in 35 (20%) of the subjects.

Conclusions Pregnancy did not consistently worsen the symptoms of CFS.
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It is frustrating how a major error in this paper has never been corrected. As the raw numbers show, the percentage worsened after pregnancy is 50% not 20%. The latest article only gives the wrong percentage, not the raw numbers. This often happens and the results misinterpreted.
 
Dolphin said:
It is frustrating how a major error in this paper has never been corrected. As the raw numbers show, the percentage worsened after pregnancy is 50% not 20%. The latest article only gives the wrong percentage, not the raw numbers. This often happens and the results misinterpreted.
Click to expand...
The error is only in the abstract , the paper itself seems correct?
 
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