What are myalgic encephalomyelitis and chronic fatigue syndrome?
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are related and overlapping conditions which are associated with various behavioural and neurological symptoms, including excessive tiredness, impaired concentration, and weakness. There is no laboratory test for ME/CFS, but rather a diagnosis is made on the basis of symptoms. A diagnosis of ME/CFS usually requires the following symptoms to be present for six months or more:
- post-exertional malaise;
- fatigue;
- unrefreshing sleep;
- either cognitive impairment, presenting as impaired memory or ability to concentrate, or orthostatic intolerance (Institute of Medicine, 2015)
Although there is no laboratory test for the diagnosis, ME/CFS is a serious condition that can be associated with significant disability, distress, and disruption to their activities.
What causes ME/CFS?
The precise causes of ME/CFS are not fully established, although some causal factors are known. ME/CFS is a complex condition that is likely to result from interactions of multiple causal factors. These can include psychological stress and trauma, social adversity, viral and bacterial infections, alterations in the immune system, and alterations in hormones and neurochemicals (Sapra and Bhandari, 2013). Recently, a form of ME/CFS has been associated with COVID-19 infection, although many cases of ME/CFS do not involve COVID-19. ME/CFS can affect people of all ages and genders, but it is more commonly reported in women (Lim et al., 2020). However, the reason for this is unclear.
Can gender affirming hormone treatment affect my ME/CFS?
Currently, there is no robust research on the prevalence of ME/CFS in the transgender community. As noted above, ME/CFS is more commonly reported in women. However, it is unclear whether this is due to the effects of hormones or due to other causal factors. Hence, there is insufficient evidence to predict how or whether gender affirming hormone treatment will affect your ME/CFS. Nonetheless, there are anecdotal reports from trans people with ME/CFS who have taken gender affirming hormone treatment without any trouble (ME Association Facebook Page, 2020). Hence, having ME/CFS is not a contraindication to gender affirming hormone treatment.
Recommendation
As noted above, having ME/CFS is not a contraindication to gender affirming hormone treatment. However, given the lack of research evidence, it is not possible to predict how or whether gender affirming hormone treatment will affect your ME/CFS symptoms. While some people with ME/CFS report no problems from gender affirming hormone treatment, different people's bodies may respond in different ways. It is recommended that you keep your general practitioner and specialist informed about your gender affirming hormone treatment, so that they can optimise management of your ME/CFS while you are commencing gender affirming hormone treatment.
References
- Institute of Medicine (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press.
- Lim, E. J., Ahn, Y. C., Jang, E. S., Lee, S. W., Lee, S. H., and Son, C. G. (2020). "Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)". Journal of Translational Medicine, 18 (1): 100.
- ME Association Facebook Page (2020). Facebook post. https://www.facebook.com/meassociation/photos/one-of-our-wonderful-supporters-asks-are-you-transgender-and-taking-estradiol-an/2984663568257948/?_rdr
- Sapra, A., and Bhandari, P. (2013). "Chronic Fatigue Syndrome". StatPearls, NBK557676.