The CFIDS Memorial List : Highlights and Statistical Data
About The Data
This post aims to summarize the key data around MECFS as a cause of death. The most extensive data source for this is the CFIDS/ME (Chronic Fatigue Immune Dysfunction Syndrome / Myalgic Encephalomyelitis) Memorial list which contains the obituaries of 166 patients who died with ME (regardless of whether ME caused their deaths)
This post aims to provide a concise source of both emotional and statistical highlights based on the information in the CFIDS/ME list as well as the statistical analysis performed in the study "Causes of Death Among Patients With Chronic Fatigue Syndrome."
Note this post also includes my personal thoughts on both the biases of this data source and relation to other known statistics about MECFS.
https://www.ncf-net.org/memorial.htm
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Severe ME Kills
Over 1 in 10 patients with ME died of "complications relating to CFIDS/ME"
While this number is likely a bit high as cases were more likely to be reported in the database if patient's deaths were related to ME this still represents a significant portion of the obituaries for a disease generally labeled as non-terminal.
Patients who died of complications of ME were often reported as having "severe" and "progressive" forms of the disease. As 15% of patients with ME have a declining course* of illness this statistic would suggest 2 in 3 of such patients will die of the illness.
*Standford Study: Onset Patterns and Course of MECFS
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/
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ME Patients Die Younger from Heart Failure and Cancer
The top causes of death for patients with ME were Suicide (20.1%) Heart Failure (20.1%) and Cancer (19.4%) accounting for 59.6% of all deaths.
ME patients died 24.4 years earlier from heart failure with patients who died of heart failure averaging 58.7 yrs of age compared to 83.1 nationally.
ME patients died 24.2 years earlier from cancer with patients who died of cancer averaging 47.8 compared to a national average of 72.
The average age of death for patients on the CFIDS memorial list was 43.7 in comparison to a national average of 78.8 years or 35.1 years younger.
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ME Patients Die At High Rates From Suicide
20.1% of ME patients died of suicide. Only 2% of patients with a diagnosis of depression will go on to die from suicide (Source: US Dept Health and Human Services)
ME patients died 8.7 years earlier from suicide with patients who died of suicide averaging 39.3 yrs of age compared to 48 nationally.
Based on the average age of death in this study of 43.7, patients with ME who committed suicide took an average of 4.4 years off of their life expectancy.
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Early Death Analysis
A 35.1 year gap in life expectancy is extremely substantial and shows just how severely ill and frail people with ME are. However, it should be noted that older patients were possibly less likely to have their deaths reported as they would have been less likely to have a "noteworthy" death.
The cancer and heart failure statistics likely reflect the cardiovascular and immunological features of MECFS. However, they may also be higher due to the lifestyle adjustments necessary in ME patients such as living sedentary or bedbound lives (leading to higher risk of heart failure) and not being able to receive timely medical care (thus leading to later diagnosis of cancers).
The fact that death from suicides are high is unsurprising given the extreme medical and societal neglect faced by ME patients. However, it should be noted that 20% is an extremely high proportion of patients. For reference only 2% of patients ever treated for depression will go on to actually die from suicide, 6% in the case of those hospitalized for suicidal ideation (Source: US Dept Health and Human Services).
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Gender Differences
The makeup of patients in the CFIDS database reflects the gender disparity of ME patients generally with around 3 in 4 patients being female (74.4%).
However, there were interesting disparities in the proportion of men and women who died of cancer and suicide.
Women with ME were more likely to die of suicide (82.8% female vs 74.4%) and cancer (82.1% female vs 74.4%). Whereas men were more likely to die of heart failure (34.5% male vs 25.6%).
The higher likelihood of cancer in women may be due to more autoimmune presentations of ME in women.
It is interesting that men are less represented in suicides in the ME population because nationally men are more likely to die of suicide with 7% of men with a history of depression going on to die from suicide and only 1% of women (Source: US Dept Health and Human Services).
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Patients Who Died Of ME Died Younger
Of all causes of death, complications related to CFIDS/ME had the lowest average age at 35.6 followed by suicide at 39.3 yrs of age.
This is in comparison to the average for all patients with ME of 43.7.
In other words, patients who died of ME more directly died on average 8.1 years younger.
This may be because patients with a more aggressive form of the disease are both more likely to die young and to die of ME before something else can kill them.
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Common themes
Extreme suffering was frequently mentioned, oftentimes in the context of decades spent with severe pain
Almost all obituaries that included information about the personal lives of the patient mentioned advocacy, this may be a bias in the dataset as it collects many entries from community groups
Suicides frequently happened decades into life with the disease indicating that it is not just a response to the immediate change of becoming disabled. However, many did occur shortly after worsening of the disease. It seems becoming severely affected may be a greater trigger for suicide than being diagnosed.
Medical mistreatment and neglect featured heavily in many of the stories particularly those who died of suicide or complications from ME. It featured least often in those who died from cancer but was still present in some cases.
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Human Lives
At the end of the day, the real power of the CFIDS/ME memorial list is not as a data source on statistical probabilities of death. It is a testament to the incredible suffering and strength of the hundred plus people with ME whose lives have been lost.
In addition to this post, I will be sharing a selection of entries from the list to my stories and saving them in a highlights reel. Every single story on the list matters. Every person matters, including the millions of people not listed.
Because there are so many people who never get the diagnosis of MECFS. Who die alone and unattended to. Who die on the streets because they couldn't keep going to work. Who die "suddenly" after becoming ill and trying to push themselves back into health. Who die of "natural causes" at 50 after being "in ill health."
Every life matters. These people matter. We remember them.
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Severe ME kills.
TW: #death & #suicide from #MyalgicEncephalomyelitis
The CFIDS ME memorial list is an incredible and tragic data source counting hundreds of stories of the lives of those with CFIDS aka MECFS or Chronic Fatigue Syndrome.
Of course, as the data from this list shows, calling this disease CFS "chronic fatigue syndrome" is like calling Parkinson's disease "shakey hands syndrome."
"Fatigue is what we experience, but it is like comparing a match to an atomic bomb."
The list shows many key facts about Myalgic E
1.) Severe ME Kills. While ME is certainly a chronic illness not a death sentence, it most certainly can lead to death, especially indirectly through frailty and infection. The extreme poor health of pwME must not be underestimated.
2.) Quality of life in ME is abysmal and made worse by medical gaslighting, medical neglect including lack of palliative care and stigma. The suicide rate of over 20% is extraordinarily high over 10x that of major depression disorder. In fact, CRPS often known as the suicide disease as it is one of the most painful conditions known to man with no cure "only" has a suicide attempt rate of around 15%.
3.) Research into ME is desperately needed. The life expectancy reductions in ME due to cancer and heart failure are still completely unexplained. The psychologization of this disease has slowed and hindered essential research into physical dysfunction. Dysfunction has a concrete effect on quality of life and mortality.
But in addition to all this, the true impact of the CFIDS memorial list is that of people's stories. These deaths are not just data points, they are mothers, daughters, fathers and sons. They are friends, family, artists, and athletes. They are the millions missing and millions more who had their lives stolen from them long before they ended up on this list. For those who have passed it is too late. But we share their memories, we share blue roses in the hope that maybe we can make ME Action for those who are not yet dead.
I urge you to read the list yourself and see the human toll of this disease.
