I find this article extremely biased. It would have been preferable to also include stories about people who found a way forward in their lives despite their illnesses. I can tell you there are many people who have chronic illness who find not just support in online groups but resources to heal and improve their lives and become productive individuals. It's clear the author only wanted to focus on one side of this story. This is not great reporting.
I've had pain since a rear-end collision in 1993. I did all the normal things. I tried acupuncture and chiropractic. I went to neurologists and spine doctors. There were no obvious bones out of place and no big herniations, so I was told to take Advil, exercise, and lose weight. None of that worked, but "mainstream" doctors have no other answers to give. No one would tell me why I hurt. Must be mental.
Eventually I found pain doctors, those actually specializing in reducing pain. I always tried to fine one who was either a former anesthesiologist or trained as one. A big part of treating pain is steroid and other anti inflammatory injections. I wanted a trained MD as someone sticking a large needle in my back and neck.
About 15 years on the doctor found an operable hernia in my lower back. I jumped at the idea of surgery. Finally they found something fixable! For whatever reason the surgery "failed" and did not stop the pain and eventually led to both legs and both feet awash in peripheral neuropathy. The nerves were dying, and they hurt constantly. An internal spinal stimulator helps with the low back and legs, but mostly percocets and a fentanyl patch, plus lots of Advil and Tylenol and gabapentin.
For pain, pain doctors are the answer. I am not talking about pill mills but actual well run offices. Try one out.
Excellent. POTS is simple lightheadedness? I was amazed at her lack of education and empathy, especially when it merely takes a Google search. The sad thing is, people will apply the same dismissive attitude toward people they encounter with these serious illnesses in the future based on the erroneous description here.
This is one of the worst researched articles about the psychological affects of adolescents' chronic illnesses I have ever read. The writer significantly dismisses the severity of the medical conditions these kids are facing and therefore misrepresents the patient population in order to sensationalize the story over the facts. Yes, there are patients who have this kind of disordered thinking about chronic illness and overly rely on patient sites, but it does not accurately reflect the majority of patients.
First, the facts about these conditions/syndromes:
MALS is described in this article as a "vascular condition." MALS actually occurs when an artery and ligament become compressed and blood flow to the digestive system is restricted. This causes pain, nausea, weight loss, and exhaustion after eating. The only way to avoid these symptoms is to stop eating. Many patients who have severe MALS use a GJ tube for nutrition (TPN). It's just as likely that Morgan Cooper's weight had declined significantly before the tube was inserted.
POTS is described in this article as "lightheadedness" but it's much more than that - symptoms can range from mild to severely disabling affecting an estimated 1 in 100 teenagers and in the United States as many as 3 million adult and teen patients combined. Approximately 25% of POTS patients experience symptoms so severe that they are unable to attend school, work, drive, and some are bedridden at some point in their lives. It is a condition characterized by too little blood returning to the heart when moving from a lying down to a standing up position. Symptoms can include fainting, dizziness, or lightheadedness upon standing. It is the disorder of the autonomic system, the part of our body we cannot control and can affect several systems in the body. POTS also There are different types and causes.
Gastroparesis "stomach pain" should have been described as a condition that affects the stomach muscles (usually because autonomic system isn't working properly) and prevents proper stomach emptying. This can cause nerve damage in the stomach.
MCAS "allergy like reactions" should have been defined as immunological disorder resulting in a range of reactions that can affect every body system and sometimes includes anaphylaxis or near anaphylactic reactions.
Ehlers Danlos Syndrome "characterized by overly flexible joints and easily bruised skin." In reality, the most common form, hypermobile Ehlers Danlos Syndrome hEDS is a rare genetic disorder affecting the connective tissues. Typical symptoms include overly mobile joints (hypermobility), unusually stretchy skin, and chronic musculoskeletal pain, meaning pain in the muscles, bones, and joints. One of the defining factors of hEDS is pain - both chronic and acute (because of dislocating joints).
Approximately one third of these kids have the "trifecta" which is POTS, MCAS, and hEDS. Some will have additional medical issues. The author discussed Marybeth Marshall and her experience of pictures of EDS patients "in hospital beds and crying." However, it is widely known in the EDS community that hospitalization is rarely helpful except for specific surgical issues. There are several positive EDS Facebook communities that are positive and discuss positive ways to get better. I have known watched hundreds of kids and adults be diagnosed with these syndromes over the years, in addition to my daughter and me. It is common for most chronically ill patients to "go down the rabbit hole" when first diagnosed, but most recover enough to lead productive lives. The author should correct her reporting or remove this sensationalized article because it does not reflect most of the chronic illness community.
Are you happy now? If it wasn’t difficult enough to find a Doctor that didn’t internally role their eyes when you presented your quite legitimate symptoms to them, now you and Rowling have created this monster - https://www.reddit.com/r/medicine/comments/xaqb60/the_spoonies/
I hope you read Sean O’Neill’s piece in The Times, and feel as disgusted with yourself as parents of children with these diseases who are watching their children waste away, scared to death the next time they go into their child’s room, they’ll be dead through lack of medical care and frankly - compassion!
Likewise, several spoonie illnesses might be thought of as what doctors sometimes call “functional disorders”—meaning there is no known physical cause or confirmatory set of medical tests. Cases in point: irritable bowel syndrome, chronic fatigue syndrome, and fibromyalgia.
“Functional disease is a real and chronic problem,” said Dr. Katie Kompoliti, a neurologist at Rush University Medical Center who was part of the team treating the influx of tic-ing teens. “It’s just not the one they think they have.”
I missed this. Nearly 30 people died last year from “functional illness” Two of them were under thirty years of age. I expect you would have lumped those in as “spoonies”.
Fibromyalgia and ME are not functional illnesses. IBS is likely Mast cell activation - also not a functional illness. I am astonished at your lack of research ability. Have you even graduated?
I am pleased the writer found two people with clear mental health issues to speak for the thousands of people who don’t.
What’s sad about JK Rowling setting off uninspired “writers” like this one, is these diseases are real is the first thing to say. They are under researched, under treated, and most importantly under diagnosed.
Have a think about that before you start typing at 100 miles an hour about how terrible the internet is. We have millions of untreated people out there, shut in their homes, living pandemic style, and their only means of communication mostly are the various SM platforms.
Might seem strange to normal people able to leave the house freely, but it isn’t to those living a life under lockdown and proactively seek out the communities that need to lobby governments for change because people are dying without care or treatment, living decades in lockdown.
The only mass hysteria is the belief that "the spoonies are coming for your daughters". What a rediculous, poorly written article featuring a young woman who claims she doesn't like the sick role and victimization, but talks about her experience as a sick girl in length and claims she was victimized by "Spoonies".
Missing are all the stories of lives that were saved because neglected young women reached out to a community online. Those other women don't exist in a vaccum either; many of them have been seen by some of the worlds best doctors getting cutting edge treatment. In order to get better, not to "belong". Munchausens is far more rare than EDS, POTS and MCAS, and it's disgusting how young women are still pushing back the medieval "hysteria" diagnosis.
This article cherry picks examples from young women on tik tok and portrays then as munchhausens, or suffering from a "purely functional" mental condition, which is unfair and inaccurate. The person (Cooper) featured had a structural abnormality that was corrected with surgery. She didn't get better because she stopped using her phone and got therapy. Cooper got better because she got a surgical fix for a condition many doctors don't even think to screen for. It's likely she was the one that even advocated for doctors to give her a CT to check for MALS. Even coopers functional disorder, her ED, was cured by three weeks of intensive inpatient therapy, not just a couple CBT sessions or her parents taking away her phone. Disappearing off social media won't release your median acruate ligament spontaneously.
In addition, the "lying to doctors" isn't...lying. An active stand test requires patients *remove* compression garments. Tilt table tests require patients go off all their medications to provoke a response. These young women aren't taking beta blockers to fake fainting, and to my knowledge, there is no "technique" to raise your heart rate over 30bpm standing vs sitting. The diagnostic criteria for POTS can't be faked. I'd argue it's far easier to fake a "functional" condition to get on powerful, sedating anti-psychs than it is to fake having genetic conditions, like EDS. Besides, to get treatment covered, you *have* to name the condition, be it pots, eds, sinus tachycardia...whatever. The entire health insurance industry depends on ICD10 codes. These young women can't get the healthcare they need unless a doctor can see their condition in office (fainting, high HR standing) and gives it a name.
Diagnosing patients with a "functional disorder" is, ironically, what this article implies is wrong with modern medicine...the need to have a name to a set of conditions so badly it masks the *real* problem. This article fails to mention the women who received an functional diagnosis first, and were subsequently neglected in hospital when having gallstones, appendicitis, and heart attacks. If you have a functional disorder diagnosis in your chart, why "waste resources" testing for anything when you're pain is likely "neuroplastic". Imagine Cooper getting a functional diagnosis, then complaining of "chest pain, gastrointestinal discomfort and painful eating". No way they would have given her a CT...or recieve MALS surgery. Cooper would likely still be sick, and still need her feeding tube.
This article also fails to mention the reddits, discords and former Kiwi Farm forums dedicated to harassing these same young women on tik tok, attempting to not only discredit their illnesses, but threaten their doctors, their disability payments, their families and even reports of physical assault. Many of these women just want a community to connect too because of how they were dismissed by able bodied friends. No amount of proof will convince their hate followers otherwise. Many young women show so much online because they will not only be dismissed by their care teams meant to help them, but out of sheer desperation to quit getting daily death threats from the followers that don't believe them.
"Tik Tok is killing our kids" is such a low effort, centrist boomer scare tactic, and what makes this particular article dangerous is it's suggestion that chronically ill young women are more likely suffering from a mass psychosis than a real, curable illness. The science behind functional disorders and pain reprocessing therapy is weak, outdated, sexist, Freudian pseudoscience that answers every mystery illness with "maybe you just *think* you're sick". Not identifying as sick anymore doesn't cure you of all your sickness.
All this article does is further dismiss, demoralize and isolate young women already struggling to belong in a world increasingly hostile to chronic illnesses.
So the upshot is, it was hysteria way back when, and it's hysteria now. Only social media-induced hysteria. I went through a similar "mystery illness" when I was a little older than these girls, pre-Internet. A regimen of anti-depressants and regular exercise including swimming made short work of it. I'm glad to read the girl is getting physical exercise. There's nothing worse for a young body than a sedentary, inert lifestyle. The natural energy you have at that age has to have an outlet, and failing all else it will find one in psychosomatic pain and other ailments.
Being a victim is now more celebrated than being healthy, studious, ambitious or hard-working. Glued to screens and focussed inwards and on image, self-obsessed and searching for new ways to join groups to feel a sense of belonging...how on earth will we be able to stop this? When these young kids are the generation in charge, in maybe 30 years, what kind of world will it be?
Though the suffering may be real, the underlying diseases and syndromes may well be imaginary.
There's a well-documented history of hysterical illness, not restricted to but prevelent amoung young women. It seems to me plausible that the advent of social media has exacerbated this tendency.
The contemporary tendency to valorize suffering no doubt contributes toward the spread of this moral virus. What could be more appealing to adolescent and young women than the notion that their pains and travails canonize them?
Wow... I had no idea. These health issues seem to tie into another thread of thinking called, Symptom Pools, a subject I first learned about when reading Crazy Like Us, by Ethan Watters. A topic revisited recently in Bari's interview with Johann Hari.
I'm curious if any of the social contagion typical of Spoonie's could be similar to the 5300% increase in teenage girls identifying as "other" or male vs. female over the past decade. It also points directly to Dr. Lisa Littman hypothesis of something she named, Rapid Onset Gender Dysphoria.
I find this article extremely biased. It would have been preferable to also include stories about people who found a way forward in their lives despite their illnesses. I can tell you there are many people who have chronic illness who find not just support in online groups but resources to heal and improve their lives and become productive individuals. It's clear the author only wanted to focus on one side of this story. This is not great reporting.
I've had pain since a rear-end collision in 1993. I did all the normal things. I tried acupuncture and chiropractic. I went to neurologists and spine doctors. There were no obvious bones out of place and no big herniations, so I was told to take Advil, exercise, and lose weight. None of that worked, but "mainstream" doctors have no other answers to give. No one would tell me why I hurt. Must be mental.
Eventually I found pain doctors, those actually specializing in reducing pain. I always tried to fine one who was either a former anesthesiologist or trained as one. A big part of treating pain is steroid and other anti inflammatory injections. I wanted a trained MD as someone sticking a large needle in my back and neck.
About 15 years on the doctor found an operable hernia in my lower back. I jumped at the idea of surgery. Finally they found something fixable! For whatever reason the surgery "failed" and did not stop the pain and eventually led to both legs and both feet awash in peripheral neuropathy. The nerves were dying, and they hurt constantly. An internal spinal stimulator helps with the low back and legs, but mostly percocets and a fentanyl patch, plus lots of Advil and Tylenol and gabapentin.
For pain, pain doctors are the answer. I am not talking about pill mills but actual well run offices. Try one out.
Excellent. POTS is simple lightheadedness? I was amazed at her lack of education and empathy, especially when it merely takes a Google search. The sad thing is, people will apply the same dismissive attitude toward people they encounter with these serious illnesses in the future based on the erroneous description here.
This is one of the worst researched articles about the psychological affects of adolescents' chronic illnesses I have ever read. The writer significantly dismisses the severity of the medical conditions these kids are facing and therefore misrepresents the patient population in order to sensationalize the story over the facts. Yes, there are patients who have this kind of disordered thinking about chronic illness and overly rely on patient sites, but it does not accurately reflect the majority of patients.
First, the facts about these conditions/syndromes:
MALS is described in this article as a "vascular condition." MALS actually occurs when an artery and ligament become compressed and blood flow to the digestive system is restricted. This causes pain, nausea, weight loss, and exhaustion after eating. The only way to avoid these symptoms is to stop eating. Many patients who have severe MALS use a GJ tube for nutrition (TPN). It's just as likely that Morgan Cooper's weight had declined significantly before the tube was inserted.
POTS is described in this article as "lightheadedness" but it's much more than that - symptoms can range from mild to severely disabling affecting an estimated 1 in 100 teenagers and in the United States as many as 3 million adult and teen patients combined. Approximately 25% of POTS patients experience symptoms so severe that they are unable to attend school, work, drive, and some are bedridden at some point in their lives. It is a condition characterized by too little blood returning to the heart when moving from a lying down to a standing up position. Symptoms can include fainting, dizziness, or lightheadedness upon standing. It is the disorder of the autonomic system, the part of our body we cannot control and can affect several systems in the body. POTS also There are different types and causes.
Gastroparesis "stomach pain" should have been described as a condition that affects the stomach muscles (usually because autonomic system isn't working properly) and prevents proper stomach emptying. This can cause nerve damage in the stomach.
MCAS "allergy like reactions" should have been defined as immunological disorder resulting in a range of reactions that can affect every body system and sometimes includes anaphylaxis or near anaphylactic reactions.
Ehlers Danlos Syndrome "characterized by overly flexible joints and easily bruised skin." In reality, the most common form, hypermobile Ehlers Danlos Syndrome hEDS is a rare genetic disorder affecting the connective tissues. Typical symptoms include overly mobile joints (hypermobility), unusually stretchy skin, and chronic musculoskeletal pain, meaning pain in the muscles, bones, and joints. One of the defining factors of hEDS is pain - both chronic and acute (because of dislocating joints).
Approximately one third of these kids have the "trifecta" which is POTS, MCAS, and hEDS. Some will have additional medical issues. The author discussed Marybeth Marshall and her experience of pictures of EDS patients "in hospital beds and crying." However, it is widely known in the EDS community that hospitalization is rarely helpful except for specific surgical issues. There are several positive EDS Facebook communities that are positive and discuss positive ways to get better. I have known watched hundreds of kids and adults be diagnosed with these syndromes over the years, in addition to my daughter and me. It is common for most chronically ill patients to "go down the rabbit hole" when first diagnosed, but most recover enough to lead productive lives. The author should correct her reporting or remove this sensationalized article because it does not reflect most of the chronic illness community.
.
Are you happy now? If it wasn’t difficult enough to find a Doctor that didn’t internally role their eyes when you presented your quite legitimate symptoms to them, now you and Rowling have created this monster - https://www.reddit.com/r/medicine/comments/xaqb60/the_spoonies/
I hope you read Sean O’Neill’s piece in The Times, and feel as disgusted with yourself as parents of children with these diseases who are watching their children waste away, scared to death the next time they go into their child’s room, they’ll be dead through lack of medical care and frankly - compassion!
https://twitter.com/TimesONeill/status/1525077745629286401
Likewise, several spoonie illnesses might be thought of as what doctors sometimes call “functional disorders”—meaning there is no known physical cause or confirmatory set of medical tests. Cases in point: irritable bowel syndrome, chronic fatigue syndrome, and fibromyalgia.
“Functional disease is a real and chronic problem,” said Dr. Katie Kompoliti, a neurologist at Rush University Medical Center who was part of the team treating the influx of tic-ing teens. “It’s just not the one they think they have.”
I missed this. Nearly 30 people died last year from “functional illness” Two of them were under thirty years of age. I expect you would have lumped those in as “spoonies”.
Fibromyalgia and ME are not functional illnesses. IBS is likely Mast cell activation - also not a functional illness. I am astonished at your lack of research ability. Have you even graduated?
I am pleased the writer found two people with clear mental health issues to speak for the thousands of people who don’t.
What’s sad about JK Rowling setting off uninspired “writers” like this one, is these diseases are real is the first thing to say. They are under researched, under treated, and most importantly under diagnosed.
Have a think about that before you start typing at 100 miles an hour about how terrible the internet is. We have millions of untreated people out there, shut in their homes, living pandemic style, and their only means of communication mostly are the various SM platforms.
Might seem strange to normal people able to leave the house freely, but it isn’t to those living a life under lockdown and proactively seek out the communities that need to lobby governments for change because people are dying without care or treatment, living decades in lockdown.
This piece is appalling and ableist.
The only mass hysteria is the belief that "the spoonies are coming for your daughters". What a rediculous, poorly written article featuring a young woman who claims she doesn't like the sick role and victimization, but talks about her experience as a sick girl in length and claims she was victimized by "Spoonies".
Missing are all the stories of lives that were saved because neglected young women reached out to a community online. Those other women don't exist in a vaccum either; many of them have been seen by some of the worlds best doctors getting cutting edge treatment. In order to get better, not to "belong". Munchausens is far more rare than EDS, POTS and MCAS, and it's disgusting how young women are still pushing back the medieval "hysteria" diagnosis.
Hypochondriacs👌
This article cherry picks examples from young women on tik tok and portrays then as munchhausens, or suffering from a "purely functional" mental condition, which is unfair and inaccurate. The person (Cooper) featured had a structural abnormality that was corrected with surgery. She didn't get better because she stopped using her phone and got therapy. Cooper got better because she got a surgical fix for a condition many doctors don't even think to screen for. It's likely she was the one that even advocated for doctors to give her a CT to check for MALS. Even coopers functional disorder, her ED, was cured by three weeks of intensive inpatient therapy, not just a couple CBT sessions or her parents taking away her phone. Disappearing off social media won't release your median acruate ligament spontaneously.
In addition, the "lying to doctors" isn't...lying. An active stand test requires patients *remove* compression garments. Tilt table tests require patients go off all their medications to provoke a response. These young women aren't taking beta blockers to fake fainting, and to my knowledge, there is no "technique" to raise your heart rate over 30bpm standing vs sitting. The diagnostic criteria for POTS can't be faked. I'd argue it's far easier to fake a "functional" condition to get on powerful, sedating anti-psychs than it is to fake having genetic conditions, like EDS. Besides, to get treatment covered, you *have* to name the condition, be it pots, eds, sinus tachycardia...whatever. The entire health insurance industry depends on ICD10 codes. These young women can't get the healthcare they need unless a doctor can see their condition in office (fainting, high HR standing) and gives it a name.
Diagnosing patients with a "functional disorder" is, ironically, what this article implies is wrong with modern medicine...the need to have a name to a set of conditions so badly it masks the *real* problem. This article fails to mention the women who received an functional diagnosis first, and were subsequently neglected in hospital when having gallstones, appendicitis, and heart attacks. If you have a functional disorder diagnosis in your chart, why "waste resources" testing for anything when you're pain is likely "neuroplastic". Imagine Cooper getting a functional diagnosis, then complaining of "chest pain, gastrointestinal discomfort and painful eating". No way they would have given her a CT...or recieve MALS surgery. Cooper would likely still be sick, and still need her feeding tube.
This article also fails to mention the reddits, discords and former Kiwi Farm forums dedicated to harassing these same young women on tik tok, attempting to not only discredit their illnesses, but threaten their doctors, their disability payments, their families and even reports of physical assault. Many of these women just want a community to connect too because of how they were dismissed by able bodied friends. No amount of proof will convince their hate followers otherwise. Many young women show so much online because they will not only be dismissed by their care teams meant to help them, but out of sheer desperation to quit getting daily death threats from the followers that don't believe them.
"Tik Tok is killing our kids" is such a low effort, centrist boomer scare tactic, and what makes this particular article dangerous is it's suggestion that chronically ill young women are more likely suffering from a mass psychosis than a real, curable illness. The science behind functional disorders and pain reprocessing therapy is weak, outdated, sexist, Freudian pseudoscience that answers every mystery illness with "maybe you just *think* you're sick". Not identifying as sick anymore doesn't cure you of all your sickness.
All this article does is further dismiss, demoralize and isolate young women already struggling to belong in a world increasingly hostile to chronic illnesses.
So the upshot is, it was hysteria way back when, and it's hysteria now. Only social media-induced hysteria. I went through a similar "mystery illness" when I was a little older than these girls, pre-Internet. A regimen of anti-depressants and regular exercise including swimming made short work of it. I'm glad to read the girl is getting physical exercise. There's nothing worse for a young body than a sedentary, inert lifestyle. The natural energy you have at that age has to have an outlet, and failing all else it will find one in psychosomatic pain and other ailments.
Being a victim is now more celebrated than being healthy, studious, ambitious or hard-working. Glued to screens and focussed inwards and on image, self-obsessed and searching for new ways to join groups to feel a sense of belonging...how on earth will we be able to stop this? When these young kids are the generation in charge, in maybe 30 years, what kind of world will it be?
There are similarities in the dynamics including spread of those claiming trans identities in adolescence and the physically I’ll spoonies.
Identify as sick?
There’s an unintended consequence of identity neo-religious fervor.
Maybe this is just the new stigmata.
Though the suffering may be real, the underlying diseases and syndromes may well be imaginary.
There's a well-documented history of hysterical illness, not restricted to but prevelent amoung young women. It seems to me plausible that the advent of social media has exacerbated this tendency.
The contemporary tendency to valorize suffering no doubt contributes toward the spread of this moral virus. What could be more appealing to adolescent and young women than the notion that their pains and travails canonize them?
This is real journalism. Thank you.
Agreed. Excellent reporting. We're being driven crazy by our phones.
it is, and that’s why we’re all here supplying them.
They’re part of a new wave of hope for the kids.
Wow... I had no idea. These health issues seem to tie into another thread of thinking called, Symptom Pools, a subject I first learned about when reading Crazy Like Us, by Ethan Watters. A topic revisited recently in Bari's interview with Johann Hari.
I'm curious if any of the social contagion typical of Spoonie's could be similar to the 5300% increase in teenage girls identifying as "other" or male vs. female over the past decade. It also points directly to Dr. Lisa Littman hypothesis of something she named, Rapid Onset Gender Dysphoria.
Great piece, Suzy!