12/05/2026
Myalgic Encephalomyelitis Awareness Day 💙
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ME (myalgic encephalomyelitis or encephalopathy), also known as ME/CFS, is a multisystemic disease involving the brain, muscle, immune and neuroendocrine (hormone producing) systems.
It has significant life-limiting and/or life-threatening potential, particularly due to the lack of awareness/knowledge, time to diagnosis, and some practitioner's denial of the condition.
It disproportionately impacts biological females, and it is thought to increase inflammation in the brain, spinal cord and muscles - impacting the signalling ability of the body.
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I began experiencing increased fatigue and post-exertional malaise (PEM) around my 21st birthday - particularly noticeable while on holiday with Lewis in March 2015.
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There are several proposed 'causes' of ME, but we have never managed to identify or isolate my root cause.
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I have been sent to five different specialisms within the NHS - all of which found the individual system they work with to be functioning no bother, and I regularly have 'normal' labs - before being referred to the ME clinic. This was 12-18 months per specialism and ME clinic due to referral and report wait times, and having to constantly instigate the investigation process again after each 'no issues'.
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It has been suggested on several occasions that it's all in my head or is mental health related, although that kind of stopped once I was actually diagnosed. At least until an appointment of April 2026 🫣.
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The only recommended therapy or treatment was Pacing, which focuses on learning to live within your limits. There were no guidelines around safe or appropriate exercise, diet changes or additions, or any supplements or potential medication routes.
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I am so lucky to have to support that I do. Loved ones are either shafted with additional jobs/tasks because I can't do them, are helping me dress, or are worrying that I'm doing too much 😓.
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I eventually left zoo-keeping because I was spending every day in intense pain, struggling to breathe, beating myself up for not doing 'more'.
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I was diagnosed at 30.
