Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds (March 2025)

[bad1080]

https://www.eurekalert.org/news-releases/1074887

More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much.

listening carefully to patients is key to avoiding the long-lasting harm that a mental health or psychosomatic misdiagnosis can cause

 

[kurt]

The primary problem with misdiagnosis is the misdiagnosis, not the psychological consequences. The study makes sense for something like misdiagnosed arthritis. Not sure what to think about it for ME/CFS. When nobody fully comprehends the disease a proper diagnosis is still important. But it's normal to be frustrated when you discover there's very little help for your disease.

 

[southwestforests]

That bit,

often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much.

Yep.
A couple weeks ago had a comprehensive initial appointment with young doctor who is replacing my retiring doctor & I did indeed say that I do not trust medical care any more ... and here are highlights of medical things which have happened to me since childhood.
Things gone wrong.
Things gone wrong in childhood for which there even today is observable evidence of them on my body.
Misdiagnosis.
Including misdiagnosis of bipolar instead of autism by multiple psychological/psychiatric care providers in 4 different cities in 2 different states in 2 different regions of the US between 1982 and 2009.

Yes, I have avoided healthcare.
As recently as this year and last year even.

The primary problem with misdiagnosis is the misdiagnosis, not the psychological consequences.

In my life, because of the above 27 years of misdiagnosis, there very much were, are, psychological consequences from being treated with psych meds for a psych thing I did not have.

Were even law enforcement consequences because of what happens when mind altering medications are given to someone who did not, does not, have the mind condition that medication was for.

 

[southwestforests]

I wish I could show you all the many posts in disability communities on Tumblr which tell about exactly that,
and even 2009 to 2015 when I was on Facebook and was in Fibromyalgia and ME/CFS groups

News Release 2-Mar-2025
Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds
Peer-Reviewed Publication
University of Cambridge

 

[Viala]

It's good that they do studies like that but their conclusions are not a discovery, these things are obvious. Anyone: misdiagnosed, mistreated, gaslighted, sick for years and without proper help, will suffer physical and psychological damages.

People die because of these diseases, of course they will not trust the doctors. Not 'more likely', as it was mildly put here. A healthy person should be angry about it, not just upset.

 

[southwestforests]

Post from an hour ago by a guy in Ireland looks directly relevant to this topic, ME/CFS is mentioned in the linked article by Time magazine,

https://myalgicencephalomyelitiscfstom.tumblr.com%2Fpost%2F777092642254258176

 

[southwestforests]

Have a couple excerpts from article above,
2nd one directly involving ME/CFS
with BOLD added by me
https://time.com/7206080/long-covid-psychiatric-wards/

The vast majority of Long COVID patients will not land in psychiatric wards, but Erin is far from the only one who has. “Emergency rooms are dangerous places for people with Long COVID,” says David Putrino, who studies and treats the condition as director of rehabilitation innovation for the Mount Sinai Health System in New York.

Numerous patients, he says, are told that inpatient mental-health care is their best or only option. He has worked with at least five patients who were ultimately admitted—and says some of his patients’ stories sound a lot like Erin’s. “Imagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you’re told, ‘Hey, good news, everything is normal and we’re sending you home,’” Putrino says. “Going home doesn’t sound like a survivable outcome. So at that point you might break down...and often that gets reinterpreted as ‘Let’s put this person on a psych hold.’”

Such experiences fit into a long, troubling tradition in medicine. Because there often aren’t conclusive tests for these types of complex chronic conditions, and because many patients do not outwardly appear unwell, they’re frequently told that they aren’t physically sick at all—that symptoms are all in their heads. “Mainstream medicine really isn’t geared toward treating conditions and diseases that it cannot see under a microscope,” says Larry Au, an assistant professor of sociology at the City College of New York who has studied one of the consequences of that disconnect: medical gaslighting of Long COVID patients.

and

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), for example, can follow a variety of viral or bacterial infections, leading to cognitive problems and extreme fatigue made worse by physical or mental exertion. (There is so much overlap between the symptoms of Long COVID and ME/CFS that many people now meet diagnostic criteria for both.) Today, the U.S. Centers for Disease Control and Prevention (CDC) calls ME/CFS a “serious, debilitating” biological illness—but for decades, it was written off as psychosomatic. A 1988 paper by researchers from the U.S. National Institutes of Health (NIH) suggested that it could be related to “unachievable ambition” and “poor coping skills.” And in 1996, a CDC researcher told a journalist that the condition has no viral cause, results in no immune abnormalities, and could be summed up as “hysteria.”


Because the disease was for so long dismissed as psychological, many clinicians to this day try treatments like cognitive behavioral therapy that, at best, do nothing to address the condition’s physical symptoms—and, at worst, exacerbate them. Elizabeth Knights, who is 40 and lives in Massachusetts, went through even more intensive mental-health treatment. She spent several weeks in a psychiatric ward in 2006 before finally being diagnosed with ME/CFS and finding care that dramatically improved her health.

During her senior year of high school, Knights caught a mono-like illness that never fully went away. Once at the top of her academic class and an avid skier and rock climber, Knights eventually had to withdraw from college and move in with her parents because she couldn’t function under the strain of persistent fatigue, flulike symptoms, and cognitive dysfunction—all of which her doctors chalked up to depression.

“I kept insisting, ‘There’s something else going on here,’” Knights remembers. But she didn’t know about ME/CFS at that time, and her doctors were adamant that her problems were psychological. So when physicians recommended she try inpatient psychiatric care, she went along with it. “That was the only path that was presented to me,” Knights remembers, and she took it.


The experience made things worse. She was given numerous medications to which she had bad reactions and went through electroconvulsive therapy, which she says damaged her memory to the point that she had to relearn how to talk and navigate her hometown. “Nobody was listening to me, and people were not informed enough to make a correct diagnosis,” she says. “I was being misdiagnosed and treated for something that I didn’t have.”

Rivka Solomon, a longtime ME/CFS patient advocate, says she hears this story a couple times a year: a patient, like Knights, has been wrongly admitted to or threatened with inpatient psychiatric care. And those are just the instances she learns about. “I worry about who is, right now, lying in a bed in a psych ward, too sick to function, left with no one to properly care for them, left with no one to advocate for them,” she says.