Menstrual problems in ME/CFS

Menstrual problems and worsening of existing menstrual/gynaecological problems have been reported to occur in some patients with myalgic encephalomyelitis and chronic fatigue syndrome.

Symptom recognition
The International Consensus Criteria (ICC) for myalgic encephalomyelitis includes Genitourinary dusturbances as an optional diagnostic criteria, but does not give examples of these. The ICC primer for clinicians states that females have a higher incidence of peri-menstrual symptoms (symptoms before and during the menstrual cycle) and these can last two weeks, and ME can involve having more severe peri-menopausal and post-menopausal symptoms.

The Canadian Consensus Criteria for ME/CFS recognizes: These are not considered part of the diagnostic criteria, but are listed under possible genitourinary symptoms in the Appendix.
 * dysmenorrhea
 * premenstrual syndrome (PMS) or irregular menstrual cycles

Boneva et al. (2011) compared women with Chronic fatigue syndrome with matched controls, and concluded that: "Amenorrhea, pelvic pain unrelated to menstruation, endometriosis, any gynecological surgery, and specifically hysterectomy and oophorectomy, were all more common in the CFS than in the control group. These differences between CFS and controls were statistically significant for pelvic pain (p = 0.004), endometriosis (p = 0.046), and any gynecological surgery (p = 0.045) (Table 2). In addition, the CFS group had a significantly greater mean number of pregnancies (2.8 in CFS vs. 2.0 in controls, p = 0.05) and greater mean number of gynecological surgeries (1.7 in CFS vs. 1.1 in controls, p = 0.05). Menopause occurred on average 4 years earlier in the CFS group (∼42 years vs. 46 years in controls), but this difference was not statistically significant (p = 0.11) (Table 2). For the subset of women without a history of surgical menopause, however, the mean age at menopause was similar for the CFS and control groups (approximately 50 years) (table 2)."

Notable studies

 * 2019, Endometriosis as a comorbid condition in chronic fatigue syndrome (CFS): Secondary analysis of data from a CFS case-control study - (Full text)
 * 2015, Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women - (Full text)
 * 2013, Perinatal perspectives on chronic fatigue syndrome - (Full text)
 * 2011, Gynecologic history in chronic fatigue syndrome (CFS): a population-based case control study - (Full text)
 * 2015, Gynecological Disorders Related to Chronic Fatigue Syndrome  - (Full text)

Possible causes
The causes of new or worsening menstrual symptoms in people with ME/CFS are not fully understood, however other hormonal problems and symptoms resulting from the endocrine system have been widely reported.

Some medications are known to cause side effects that are hormonal.

Fibromyalgia
Some people with fibromyalgia experience new or worsening menstrual or gynaecological symptoms.

Long COVID
Anecdotal reports from people with Long COVID have reported the sudden onset of significant menstrual problems after developing Long COVID. Fiona Lowenstein, co-founder of Body Politic reports: "I do still have some long-term symptoms. The most notable is that my menstrual periods have changed entirely, and they're very debilitating now. And I have a return of flu-like symptoms as well as fatigue and migraines and sometimes nausea and vomiting. And that's something I never experienced before COVID, but it is something that we see with a lot of long COVID patients and survivors who menstruate."

- Fiona Lowenstein Davis et al. (2021) reported that of the Long COVID patients surveyed who menstruated, over a third experienced relapses of Long COVID symptoms during or during their periods, which is the most inflammatory time in the menstrual cycle.

Sharp et al. (2021) reports that this is similar to the experience of ME/CFS patients, who have more flare-ups worsening their systems when they have premenstrual syndrome and at the start of menopause. Some Long COVID symptoms including changes in menstrual cycle overlap with menopause symptoms, which may result in menopause being misdiagnosed as Long COVID.

Learn more

 * Period pain - MedlinePlus
 * Perimenopause
 * Premenstrual Syndrome, Female hormones and ME/CFS - ME Association