List of deaths caused by myalgic encephalomyelitis or chronic fatigue syndrome

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Sophia suffered from very severe ME, which caused her death

When Sophia Mirza, a young artist, died in 2005 her death was widely reported as the first death from ME/CFS, but Sophia's may not have been the first death certificate stating that the cause of death was ME or chronic fatigue syndrome.[1][2] After Mirza's death, Merryn Crofts died from ME shortly after her 21st birthday.[2]

Name Age at death Died Notes
Samantha Lincroft 25 2024 Missing since 2019 with ME. Died on 31st August 2024 in Melbourne, Australia. Shining light in the ME/CFS community with her advocacy, support, and information about severe ME shared on her blog and social media. [3]
Roger Cicero 45 2016 Died of a stroke which caused reported as being caused by chronic fatigue syndrome, just hours after performing.[4] He had collapsed with severe weakness the previous year, leading to a diagnosis of myocarditis, and had to cancel the remainder of his tour.[5]
Isla (daughter to Jackie) 18 2024 Inquest open.
Emily Collingridge 30 2012 Died from "respiratory arrest in an individual with clinically diagnosed ME due to the side-effects of prescription drugs and aspiration of gastric contents" during a long hospital admission.[6] Emily became tube fed due to ME, doubly incontinent, suffered extreme pain and transient blindness and epidoses of paralysis.[6] Ill with ME since she was six years old.[6]
Merryn Crofts 21 2017 Merryn's death was due to severe malnutrition after the withdrawal of her nutrition due to ME.[7] Doctors had previously suggested her weight loss was due to anorexia but investigating found intestinal failure and swallowing problems. She had a feeding tube, then an intravenous nutrition line, but it became infected.[8] Merryn was bedbound with extreme sensitivity to light, convulsions, breathing problems and paralysis.[9]
Brynmor John 54 1988 Collapsed outside the House of Commons gym, after being told to exercise for ME.[2]
Kara Jane Spencer 32 2023 Kara was a British singer-songwriter who died from sepsis and Myalgic Encephalomyeltis, after battling for fifteen years with M.E.[10][11] ME was recorded as the cause of death on her death certificate.[12]
Sophia Mirza 32 2005 Causes of death: 1. Acute renal failure arising from the effects of chronic fatigue syndrome; 2. previous meningitis; high body mass index, dorsal root ganglionitis; and hepatic steatosis.[13][14] Severe infection of her spine was found at autopsy.[15] Severe ME Awareness Day created in memory of her.[citation needed]
Annabel Senior 60 2003 Richard Senior that reported his wife died in North Wales, and had CFS recorded on her death certificate. [1]
Laurie Walker 59 2001 Laurie was an artist who became increasingly ill with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). She developed her own hypothesis about CFIDS, and contributed to research, always fighting to try to get better. She eventually died suddenly when in her art studio.[16]
Andrew Williams 23 2019 Andrew was a young British man who developed ME/CFS when studying genetics at the University of Edinburgh. After his death, funds were raised to sponsor a PhD student to research genetics in ME/CFS patients.[17][18]
Maeve Boothby O'Neill 27 2021 Maeve died from malnutrition having been refused tube feeding after she became unable to sit up, chew or complete a liquid meal. She did not want to die and was fully conscious of the neglect she was experiencing. The inquest into how she died took three years to report systemic failure, citing six national institutions responsible for the prevention of future deaths.

Publications[edit | edit source]

In 2010, Professor Malcolm Hooper published Magical Medicine: How to Make a Disease Disappear, which described the deaths of Sophia Mirza, Merryn Crofts, Brynmor John MP, who collapsed outside the House of Commons gyms after being told to exercise by his doctor, and many others whose deaths were attributed to ME.[2][19]:15-17

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 Senior, Richard (July 26, 2006). "Not, sadly, the first". New Scientist. Comment section. Retrieved August 10, 2018.
  2. ↑ 2.0 2.1 2.2 2.3 Hooper, Malcolm (February 12, 2020). "Magical Medicine: How to Make a Disease Disappear" (PDF). Contributions from members of the ME community. Researched by Margaret Williams.
  3. ↑ "ME and more". ME and more. Retrieved March 21, 2025.
  4. ↑ Deutsche Welle (news) (March 29, 2016), German jazz singer Roger Cicero dies, aged 45
  5. ↑ "Er lebte so gesund! Wie konnte das passieren?". Bunte de Redaktion. March 30, 2016. Doch wie konnte es trotz seines gesunden Lebensstils zu seinem tragischen Tod kommen? Hat sich der leidenschaftliche Sänger so kurz vor seiner Tournee womöglich zu viel Stress zugemutet? Schon Ende letzten Jahres musste Roger Cicero wegen akuter Schwächesyndrome Termine absagen, er erlitt einen Zusammenbruch. Die Diagnose damals: Herzmuskelentzündung. Doch der Sänger, der seine Arbeit so liebte, schonte sich kaum, reiste von einer Stadt in die nächste, um seine „Cicero sings Sinatra“-Tour zu promoten, die im April starten sollte. Hat er sich zu wenig Ruhe gegönnt?
  6. ↑ 6.0 6.1 6.2 "In Remembrance: Emily Rose Collingridge" (PDF). Invest in ME Research. July 2017.
  7. ↑ "'Vindication' for woman who wanted ME on death certificate". BBC News. July 27, 2018. Retrieved December 8, 2021.
  8. ↑ Baker, Keiligh (April 2, 2018). "Woman dies aged 21 weighing just six stone after wasting away from ME". Mail Online. Retrieved December 8, 2021.
  9. ↑ Wilkinson, Damon (April 1, 2018). "'Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture'". Manchester Evening News. Retrieved December 8, 2021.
  10. ↑ "A Heartbreaking Announcement". Kara Jane Sings. January 2, 2023. Retrieved January 9, 2023.
  11. ↑ Bevis, Gavin. "Kara Jane Spencer: Severely ill singer who recorded hit album dies". BBC News. Retrieved January 10, 2023.
  12. ↑ "M.E Recorded As Underlying Cause of Kara's Death". Kara Jane Sings. January 6, 2023. Retrieved January 9, 2023.
  13. ↑ Mirza, Sophia. "Certified Copy of an Entry - Death Certificate". SophiaAndME.org.uk.
  14. ↑ Hooper, Rowan (June 16, 2006). "First official UK death from chronic fatigue syndrome". New Scientist. Retrieved August 10, 2018.
  15. ↑ "Neuropathological Report". sophiaandme.org.uk. Retrieved August 10, 2018.
  16. ↑ "Obituary - Laurie Walker". Retrieved December 9, 2021. Working with others she devloped an hypothesie regarding the cause of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), the disease that led to her death.
  17. ↑ "Investing in the future" (PDF). Breakthrough: 11–12. Spring 2022. Archived from the original on April 4, 2022.
  18. ↑ "Experimental investigation of genetic risk factors for ME/CFS revealed by the DecodeME project". ME Research UK. Retrieved August 12, 2023.
  19. ↑ Hooper, Malcolm (February 12, 2010). "Press release" (PDF).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990s, this term has apparently fallen into disuse.

See Chronic Fatigue and Immune Dysfunction Syndrome.

stress Stress can by either physical or psychological, or both. Stress is either 1) a state of emotional or psychological strain or 2) the physical stress (pressure or tension) that a physical object such the human body is placed under, e.g., a stress test is a medical test that monitors the cardiovascular system during strenuous exercise.

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - Chronic Fatigue and Immune Dysfunction Syndrome is another term for Chronic Fatigue Syndrome, but one which emphasizes the immunological aspects of the disease. Popular in the 1990s, this term has apparently fallen into disuse.

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