The Tragic Assisted Suicide of an ME/CFS Patient

How many ME/CFS patients die without being noticed or tracked by health institutions?

On January 27, a 28-year-old Danish ME/CFS patient ended her life with the help of legally sanctioned assisted suicide, as Judith Woods reported in The Telegraph. While she lived and died in Denmark, Lauren Hoeve’s death was mourned worldwide; her social media posts about the “severe ME” that kept her bed-bound touched patients, health providers, and a world of readers. (1)

Lauren wrote that she had previously been diagnosed with autism and ADHD (attention deficit hyperactivity disorder). Diagnosed with ME/CFS in 2019, she “battled extreme exhaustion and excruciating pain which left her bed-bound,” according to Lydia Hawken’s report in the Daily Mail. In 2022, Lauren started writing a blog called “Brain Fog” on X. (2)

On September 28, 2023, Lauren posted:

Sad about everything. Being severely chronically ill now and always
having been debilitated by autism & ADHD. My childhood and not
having a future. Never thought I’d grow very old, but I also didn’t
think I’d be having these life & death questions and thoughts at 28.
... I guess these feelings are normal. I’m grieving my past life, my
healthy body, everything that could have been if things had been
different. It feels unfair, but I know it’s just life. Some of us get 16
years, some get 28, others live until over 100. You get what you get. (3)

A little more than a year later, Lauren’s parents reported her death by assisted suicide.

“Lauren passed away peacefully on January 27, 2024, at age 28,” a notice posted on X by her family stated. “She requested euthanasia after years of unbearable suffering caused by severe myalgic encephalomyelitis (ME/CFS).” (2)

Early on January 27, Lauren posted a farewell to her nearly 10,000 followers on X. “This will be my last tweet. Thanks for the love, everyone. I’m going to rest a bit more and be with my loved ones.... ❤️😎👍”

While it’s known that the risk of suicide is increased among ME/CFS patients, “all-cause mortality” is considered to be no higher in this patient group than in the general population. In a 2016 study published in The Lancet, for example, no significant difference in all-cause mortality or “cancer-specific mortality” was found in ME/CFS patients when compared with the general populations of England and Wales. That study was conducted by professors from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London. (4)

A King’s College London news release, however, described The Lancet paper as reporting the suicide risk for ME/CFS patients to be six times more likely than the general population. (5)

Only a year later, a paper in the journal Fatigue reached opposite conclusions about all-cause and cancer-specific mortality in ME/CFS patients. Noting that there is “a dearth of research” on the subject, Leonard A. Jason and colleagues reported that their results suggested “there is an increase in risk for earlier mortality in patients with ME and CFS.” Two-thirds of the reported deaths were from cardiovascular problems, cancer, and suicide. They pointed out that more men with ME/CFS committed suicide compared to women patients, 53.33% to 46.67% of reported suicide deaths. (6)

“It should be noted that individuals with ME and CFS are reportedly dying at a younger age compared to the overall population,” Jason and colleagues reported. “However, only all-cause and cardiovascular-related mortality reached statistical significance. ... Most strikingly, individuals in this sample died of cardiovascular problems at an average age of 58.8. The average age of death for cardiovascular problems in the United States is 77.7, a stark contrast from the average age found in patients in this sample and the prior study.” (6)

Deaths from cancer and suicide also occur at younger ages. In this study, the mean age of cancer deaths among ME/CFS patients was 66.3, compared to the mean age of 71.1 for non-ME/CFS cancer deaths in the U.S. The mean age of death by suicide among ME/CFS patients was 41.3, compared to 47.4, the “average age of death from suicide in the United States.” (6)

Jason and colleagues also pointed out that U.S. health agencies have clearly underestimated the number of deaths attributable to ME/CFS.

The majority of caregivers (83.7%) believed that ME or CFS should
be implicated in the patient’s death. This is disproportionate with
the reported mortality rate. The National Institutes of Health (NIH)
reported that only 16 patients died as a result of ME or CFS in 2014.
The low mortality rate could be a result of this rate being based on
the ICD-10 code for post viral fatigue syndrome. Additionally, it is
possible that ME or CFS is not listed when the primary cause of death
is more apparent, such as with cancer. (6)

A study conducted at the National Cancer Institute (NCI) examined the possible connection between cancer and ME/CFS because both are “thought to be associated with immune abnormalities or infection.”  (7)

These investigators examined a database containing more than one million Medicare records of people with cancer and compared them to 100,000 control subjects. “CFS was present in 0.5% of cancer cases overall and 0.5% of controls. CFS was associated with an increased risk of non-Hodgkin lymphoma (NHL),” the NCI researchers wrote. Non-Hodgkin lymphoma is a blood cell cancer that begins in the lymph nodes (hence, “lymphoma”). (7)

AIDS patients, for example, are 10 to 20 times more likely to develop NHL than the general public because they have severe immune abnormalities, like people with cancer and/or ME/CFS. (8)

The increased rates of death and the early demise of ME/CFS patients compared to control groups are clearly in need of in-depth examination. Funding and attention are given to research investigating fatal illnesses and so far, those in charge of handing out government research funds have not yet admitted that ME/CFS can be fatal in numerous ways, some of which weren’t covered here, including malnutrition because of an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink; inability to get a diagnosis that would ensure ongoing medical care; and not being included in mainstream research because they are bed-bound and so are invisible to investigators.

Judith Woods’s article in The Telegraph veers away from Lauren Hoeve’s illness and death to discuss medically assisted suicide among people who suffer from psychiatric illnesses. Despite her heartfelt story of her own suicidal impulses due to postpartum depression, it’s jarring to see ME/CFS portrayed largely as a psychiatric illness in 2024. However, Woods concludes:

“Hoeve’s legacy will be her heartbreaking blog that charts the tragic journey she felt compelled to make. Anyone who cares about dignity in death should read it and weep.” (1)

BIBLIOGRAPHY
1.     Judith Woods. “28-year-old Lauren Hoeve died by euthanasia–to a degree, I understand her pain.” The Telegraph, February 2, 2024. https://news.yahoo.com/28-old-lauren-hoeve-died-160000727.html https://www.telegraph.co.uk/columnists/2024/02/02/lauren-hoeve-assisted-dying-suicide-postnatal-depression/
2.     Lydia Hawken. “Autistic Dutch woman, 28, who suffered with ME, dies at home by assisted suicide after sharing devastating last post saying: ‘Saturday will be my final day’.” Daily Mail, February 8, 2024. https://www.dailymail.co.uk/femail/article-13027297/women-harrowing-post-euthanasia-day.html
3.     @dutchlauren on X. https://twitter.com/dutchlauren
4.     Emmert Roberts, Simon Wessely, Trudie Chalder, Chin-Kuo Chang, Matthew Hotopf. “Mortality of People with Chronic Fatigue Syndrome: A Retrospective Cohort Study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre Clinical Record Interactive Search.” The Lancet 387:10028, p. 1638, April 16, 2016. DOI:https://doi.org/10.1016/S0140-6736(15)01223-4
5.     “Suicide six times more likely in CFS patients compared to general population.” King’s College London news brief. http://dx.doi.org/10.1016/S0140-6736(15)01223-4.https://www.kcl.ac.uk/archive/news/ioppn/records/2016/february/suicide-six-times-more-likely-in-cfs-patients-compared-to-general-population
6.     Stephanie L. McManimen, Andrew R. Devendorf, Abigail A. Brown, Billie C. Moore, James H. Moore, and Leonard A. Jason. “Mortality in Patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.” Fatigue. 2016; 4(4): 195–207.
7.     Cindy M. Chang, Joan. L. Warren, and Eric A. Engels. “Chronic Fatigue Syndrome and Subsequent Risk of Cancer Among Elderly U.S. Adults.” Cancer. 2012 Dec 1; 118(23): 5929–5936.
8.     “Lymphoma and HIV.” Lymphoma Action (a nonprofit charity in England and Wales). https://lymphoma-action.org.uk/types-lymphoma/lymphoma-and-hiv