No one should feel their only option is to die
Warning, some readers may find this content distressing. Please only read this article if you feel you are in a safe head space.
If you or someone you know is suicidal, here are some mental health helplines:
Australia: https://www.healthrect.gov.au/mental-health-helplines
International: https://blog.opencounseling.co/suicide-hotlines/
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“My only option is to die”
I was confronted with this nightmare scenario when a friend tweeted her frustration at the bureaucracy of navigating the medical system to seek assistance in ending her life. Again, she found herself misunderstood and let down by the same healthcare system that couldn't provide her with the 'healthcare' she needed in the first place. She has spent many years bedridden with severe myalgic encephalomyelitis [ME] (aka chronic fatigue syndrome), while routinely neglected from healthcare and government support. She couldn’t see any other option out of this never ending torture.
Tragically, she’s not the only one who feels assisted dying or suicide are their only options. Studies reveal the risk of suicide in people with ME is more than six-fold. The reason for such high suicide rates isn’t due to depression. Many of these patients still have motivation to do the things they love, but the severity of their daily symptoms prevents them from experiencing life in a normal human way. Instead, they endure a 'living death' existence.
The risk factors of suicide include: poverty from being too sick to work, medical neglect, rejection of disability support, social isolation, unrelenting unbearable symptoms and severe-to-extreme disability. This is compounded by disbelief from the medical community and in some cases, their own families.
For decades, this complex neuroimmune disease has been wrongly treated as a deficiency of a person’s character. Multiple sclerosis was also wrongly treated as hysteria until the invention of the MRI machine. Women with MS were placed in psych wards until scanning technology could detect brain lesions.
My body’s energy system has jumped from ‘resting’ to ‘anaerobic’ while reclined in bed, just typing this. The action of typing has bumped my heart rate up to 137bpm and I can feel the lactic acid burning in my arms.
People with ME have a dysfunctional aerobic energy system. On top of cellular energy production dysfunction and other metabolic impairments, ME studies have found neuroinflammation, vascular problems, abnormal immune response, autoimmunity, malfunction of the autonomic nervous system and changes in gut microbiome.
Very severe cases of ME leave patients completely bedridden. They cannot eat, drink or talk and are kept alive by a feeding tube and intravenous fluids. Some live like this for years in darkened rooms, unable to tolerate light, noise or any stimuli. Even reading a text on their phone or rolling over in bed can deteriorate their health causing further disability.
Yet, many doctors have this medieval belief that ME is psychosomatic or it’s just ‘fatigue’ that can be fixed by exercise and positive thinking. Up to 90% of people with ME have gone undiagnosed or are misdiagnosed because doctors aren’t properly educated.
In Australia, GPs are still referring to 20 year old clinical guidelines that don’t even require the hallmark feature of ME, post-exertional symptom exacerbation (PESE). This is a worsening of symptoms after physical or cognitive activity and is often delayed by 24-48 hours. Now there are over 100 million people in the world with long COVID and a large number of them already meet the international diagnostic criteria for ME.
People developing longterm illness after a virus is not new. Over 70% of ME patients report their symptoms began after a viral infection. And many of them (including me) predicted the world would face a tsunami of ME-like illness from the pandemic long before the term ‘long COVID’ was coined.
If doctors aren’t screening patients for post-exertional symptom exacerbation, they can cause irreparable damage by prescribing exercise therapies or encouraging their patients to increase activity.
We all had lives and careers that we loved before ME or long COVID turned it all upside-down. And it's only natural for many of us to keep pushing past our limits to hold onto those lives. If anything, we need help reducing our activity, not increasing it.
Here are hundreds of heartbreaking one line bios from people with ME or long COVID explaining what they were doing before their lives were stolen. 
So much harm has been done to this vulnerable group over the last 40 years. It’s time we fight back and get the medical research funding and government support we deserve.
You can learn more about the dire situation and the horrible history of ME by reading the following articles. If you want to help, please learn about this illness and tell others about it.
We desperately need more healthy advocates! Millions are depending on you.
If you’re in Australia, please let your GP know about this ThinkGP education module and email them the link below:
Busting the myths and redefining Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
https://www.thinkgp.com.au//education/mecfs
This education is accredited: RACGP 2 CPD, ACRRM 1 CME PD.
If you’ve had COVID or another virus and still don’t feel well after months and think you might have post-exertional symptom exacerbation (PESE) otherwise known as post-exertional malaise (PEM), please check out this advice: https://www.meaction.net/stoprestpace/
ME and PEM a short video explaining post-exertional symptom exacerbation (PESE)
If you are feeling mentally vulnerable, please talk to someone right away or seek help from the mental health helplines provided at the top of this article. And remember, you're not alone in this. Governments will not be able to brush long COVID under the rug like they did with ME. We have strength in numbers, but we need you alive to help us fight.
Doctors with ME Confront the Taboo of Suicide
https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome/lily-chu-eleanor-stein-suicide/
Why So Many Long COVID Patients Are Reporting Suicidal Thoughts
https://time.com/6186429/suicide-long-covid/
People with ME are NOT just ‘tired’ or ‘fatigued’.
My body’s energy system has jumped from ‘resting’ to ‘anaerobic’ while reclined in bed, just typing this. The action of typing has bumped my heart rate up to 137bpm and I can feel the lactic acid burning in my arms.
People with ME have a dysfunctional aerobic energy system. On top of cellular energy production dysfunction and other metabolic impairments, ME studies have found neuroinflammation, vascular problems, abnormal immune response, autoimmunity, malfunction of the autonomic nervous system and changes in gut microbiome.
Very severe cases of ME leave patients completely bedridden. They cannot eat, drink or talk and are kept alive by a feeding tube and intravenous fluids. Some live like this for years in darkened rooms, unable to tolerate light, noise or any stimuli. Even reading a text on their phone or rolling over in bed can deteriorate their health causing further disability.
Yet, many doctors have this medieval belief that ME is psychosomatic or it’s just ‘fatigue’ that can be fixed by exercise and positive thinking. Up to 90% of people with ME have gone undiagnosed or are misdiagnosed because doctors aren’t properly educated.
In Australia, GPs are still referring to 20 year old clinical guidelines that don’t even require the hallmark feature of ME, post-exertional symptom exacerbation (PESE). This is a worsening of symptoms after physical or cognitive activity and is often delayed by 24-48 hours. Now there are over 100 million people in the world with long COVID and a large number of them already meet the international diagnostic criteria for ME.
People developing longterm illness after a virus is not new. Over 70% of ME patients report their symptoms began after a viral infection. And many of them (including me) predicted the world would face a tsunami of ME-like illness from the pandemic long before the term ‘long COVID’ was coined.
If doctors aren’t screening patients for post-exertional symptom exacerbation, they can cause irreparable damage by prescribing exercise therapies or encouraging their patients to increase activity.
We all had lives and careers that we loved before ME or long COVID turned it all upside-down. And it's only natural for many of us to keep pushing past our limits to hold onto those lives. If anything, we need help reducing our activity, not increasing it.
Here are hundreds of heartbreaking one line bios from people with ME or long COVID explaining what they were doing before their lives were stolen.
As you can see, they were all highly skilled and productive people who are now missing from the workforce, schools and the community. We’re not hysterical women, malingerers or attention seekers. We’re just like you. We were happily living our life, then one day we became sick and never recovered. If it can happen to super fit athletes, it can happen to anyone.
So much harm has been done to this vulnerable group over the last 40 years. It’s time we fight back and get the medical research funding and government support we deserve.
You can learn more about the dire situation and the horrible history of ME by reading the following articles. If you want to help, please learn about this illness and tell others about it.
We desperately need more healthy advocates! Millions are depending on you.
If you’re in Australia, please let your GP know about this ThinkGP education module and email them the link below:
Busting the myths and redefining Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
https://www.thinkgp.com.au//education/mecfs
This education is accredited: RACGP 2 CPD, ACRRM 1 CME PD.
If you’ve had COVID or another virus and still don’t feel well after months and think you might have post-exertional symptom exacerbation (PESE) otherwise known as post-exertional malaise (PEM), please check out this advice: https://www.meaction.net/stoprestpace/
✋ Stop. 🛌 Rest. ⏱ Pace.
ME and PEM a short video explaining post-exertional symptom exacerbation (PESE)
If you are feeling mentally vulnerable, please talk to someone right away or seek help from the mental health helplines provided at the top of this article. And remember, you're not alone in this. Governments will not be able to brush long COVID under the rug like they did with ME. We have strength in numbers, but we need you alive to help us fight.
"Where there's life there's hope."
The world is finally waking up and acknowledging ME/CFS and LC like they did with AIDS and MS. Hopefully this will lead to billions being invested in biomedical research to help find treatments and give us our quality of life back.
ARTICLES WORTH READING AND SHARING
Doctors with ME Confront the Taboo of Suicide
https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome/lily-chu-eleanor-stein-suicide/
https://time.com/6186429/suicide-long-covid/
A Tsunami of Post-viral Disease is About to Hit Australia
https://www.emerge.org.au/pages/category/state-of-the-nation
A Life Changing Illness
“It would be difficult to design a condition that causes as much suffering while demanding any less attention from policymakers and the general public.” – Winston Blick
https://medium.com/@winstoncb/a-life-changing-illness-73c9a131acb
The Horrible History of ME
I caught a virus and never recovered – part three
https://illustratorinterrupted.blogspot.com/2021/05/i-caught-virus-and-never-recovered-part.html
Videos explaining ME including patient accounts: https://www.dialogues-mecfs.co.uk
https://www.emerge.org.au/pages/category/state-of-the-nation
A Life Changing Illness
“It would be difficult to design a condition that causes as much suffering while demanding any less attention from policymakers and the general public.” – Winston Blick
https://medium.com/@winstoncb/a-life-changing-illness-73c9a131acb
The Horrible History of ME
I caught a virus and never recovered – part three
https://illustratorinterrupted.blogspot.com/2021/05/i-caught-virus-and-never-recovered-part.html
Videos explaining ME including patient accounts: https://www.dialogues-mecfs.co.uk