“I still can’t forget those words”:mixed methods study of persisting impact [of] psychosomatic and psychiatric misdiagnoses, 2025, Sloan+

As good an example as any that medical professionals really cannot handle the most basic criticism about them, and predictable: the medicine sub-reddit locked and deleted the thread.

The reason given is: no personal agendas. Seriously, most monarchs in history have handled criticism better than this. They had to. Pathetic.

 

There is definitely a phenomenon of online communities often having vague rules that moderators selectively enforce when they see something they do not like. A sort of way for them to remove anything they don’t like while keeping plausible deniability that they were just enforcing a rule when just looking at a single case. In this case it’s a theater to give the illusion of fairness.

In fact, the irony being that it’s more likely that the moderators removed this post to enforce their own worldview / agenda, then that this post way made by someone trying to push a specific agenda…

 

The post is outside the normal themes in the sub, so I wouldn’t be surprised if both parties had an agenda. But we’re getting a bit off track here.

I think it’s a futile effort to try and create change in subreddits in general, so it’s probably better to spend our energy elsewhere.

 

With @Aaron we’ve had pretty good experiences making posts in sciency and news related subreddits about ME. And the posts often get quite big and attract sympathetic comments. We haven’t tried anything to do with subreddits doctors are on though.

But our posts on other subs have led to a couple DMs and thread conversations with sympathic medical professionals who end up reading resources we send them.

 

@Yann04 that’s a positive surprise!

 

This was more like 1 yr to 8 months ago, I don’t have the energy or will to spend my time arguing on reddit anymore, and I think I agree with you there are more productive ways to spend my energy.

But honestly occasionally posting a post that might get big and then crossposting it to r/cfs if it’s getting a lot of upvotes (this ensures the comments tend to be more sympathetic), is an okay method of activism I think. It ends up having quite a big reach.

 

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

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


A ‘chasm of misunderstanding and miscommunication’ is often experienced between clinicians and patients, leading to autoimmune diseases such as lupus and vasculitis being wrongly diagnosed as psychiatric or psychosomatic conditions, with a profound and lasting impact on patients, researchers have found.

A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

The researchers are calling for greater awareness among clinicians of the symptoms of such diseases, which they recognise can be difficult to diagnose, and for more support for patients.

Autoimmune rheumatic diseases such as rheumatoid arthritis, lupus and vasculitis are chronic inflammatory disorders that affect the immune system and can damage organs and tissues throughout the body. They can be very difficult to diagnose as people report a wide range of different symptoms, many of which can be invisible, such as extreme fatigue and depression.

Dr Melanie Sloan from the University of Cambridge led a study exploring patient-reported experiences from two large groups, each of over 1,500 patients, and in-depth interviews with 67 patients and 50 clinicians. The results are published today in Rheumatology.

Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing. For example, one patient with multiple autoimmune diseases said: “One doctor told me I was making myself feel pain and I still can’t forget those words. Telling me I’m doing it to myself has made me very anxious and depressed.”

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. I even stopped taking my immunosuppressive medicine because of those words”.

Following these types of misdiagnoses, patients often then blamed themselves for their condition, as one individual described: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”

One patient described the traumatising response their doctor’s judgement had on them: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”

Dr Melanie Sloan, from the Department of Public Health and Primary Care at the University of Cambridge, said: “Although many doctors were intending to be reassuring in suggesting a psychosomatic or psychiatric cause for initially unexplainable symptoms, these types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care. These appear to rarely be resolved even after the correct diagnoses. We must do better at helping these patients heal, and in educating clinicians to consider autoimmunity at an earlier stage.”

Clinicians highlighted how hard it was to diagnose autoimmune rheumatic diseases and that there was a high risk of misdiagnosis. Some doctors said they hadn’t really thought about the long-term problems for patients, but others talked about the problems in regaining trust, as one GP from England highlighted: “They lose trust in anything that anyone says…you are trying to convince them that something is OK, and they will say yes but a doctor before said that and was wrong.”

However, there was evidence that this trust can be rebuilt. One patient described having been “badly gaslit by a clinician”, but that when they told the clinician this, “She was shocked and had no idea … She was great. Took it on the chin. Listened and heard. Apologised profusely…For me, the scar of the original encounter was transformed into something much more positive.”

Mike Bosley, autoimmune patient and co-author on the study, said: “We need more clinicians to understand how a misdiagnosis of this sort can result in long-standing mental and emotional harm and in a disastrous loss of trust in doctors. Everyone needs to appreciate that autoimmune conditions can present in these unusual ways, that listening carefully to patients is key to avoiding the long-lasting harm that a mental health or psychosomatic misdiagnosis can cause.”

The study authors recommend several measures for improving support for patients with autoimmune rheumatological diseases. These are likely to apply for many other groups of patients with chronic diseases that are often misunderstood and initially misdiagnosed.

They propose that clinicians should talk about previous misdiagnoses with patients, discuss and empathise with their patients as to the effects on them, and offer targeted support to reduce the long-term negative impacts. Health services should ensure greater access to psychologists and talking therapies for patients reporting previous misdiagnoses, which may reduce the long-term impact on wellbeing, healthcare behaviours, and patient-doctor relationships. Education may reduce misdiagnoses by encouraging clinicians to consider systemic autoimmunity when they assess patients with multiple, seemingly unconnected, physical and mental health symptoms.

Professor Felix Naughton, from the Lifespan Health Research Centre at the University of East Anglia, said: “Diagnosing autoimmune rheumatic diseases can be challenging, but with better awareness among clinicians of how they present, we can hopefully reduce the risk of misdiagnoses. And while there will unfortunately inevitably still be patients whose condition is not correctly diagnosed, with the correct support in place, we may be able to lessen the impact on them.”

The research was funded by LUPUS UK and The Lupus Trust.

Reference
Sloan, M, et al. “I still can’t forget those words”: mixed methods study of the persisting impacts of psychosomatic and psychiatric misdiagnoses. Rheumatology; 3 Mar 2025; DOI: 10.1093/rheumatology/keaf115

Journal
Rheumatology

DOI
10.1093/rheumatology/keaf115

Method of Research
Survey

Subject of Research
People

Article Title
“I still can’t forget those words”: mixed methods study of the persisting impacts of psychosomatic and psychiatric misdiagnoses

Article Publication Date
3-Mar-2025

 

I've been amazed at how often on medical-related forums the House MD quote "It's never lupus" crops up. I have wondered how many students and doctors have subconsciously been influenced by that even though it is usually said with tongue-in-cheek.

 

I found this quote referring to doctors who'd read the research :

from this link on the subject :

https://theconversation.com/all-in-...se-autoimmune-disease-as-psychosomatic-250953

to be shocking.

It suggested to me that many doctors have no idea how human beings work.

When being told a health problem is psychological or stress-related most patients will realise they aren't going to get a proper diagnosis or any help other than, possibly, a prescription for an anti-depressant.

Edit : And such a diagnosis will affect all their interactions with doctors from that day onwards. Everything will be assumed in the first instance to be psychological or psychiatric, and many doctors won't look any further.

Another issue is that with the computerisation of medical records and text-search of an entire medical record being available to all and sundry with access to records, doctors and nurses can more easily dig up the opinions of earlier medical staff (some probably long-dead) and assume they still apply.

I was first assumed to be attention-seeking and/or drug-seeking in my teens (1970s). I'm now in my 60s. That diagnosis probably led to a triage nurse calling out to me as I arrived at her door "I can't give you any pain killers" even though I wasn't asking for them. This happened in 2018 in a hospital I had never been to before to ask for an x-ray of an arm I thought might be broken. It turned out I had a large haematoma but no broken bone.

 

But the psychosomatic models tells them everything there is to know, how can they possibly be wrong about human nature? /sarcasm

 

Medscape News UK

Autoimmune Disease Misdiagnoses Can Cause Long-Term Harm
Dr Sheena Meredith
March 06, 2025

https://www.medscape.com/viewarticl...25a10005ln?&icd=login_success_email_match_fpf

 

I'm sorry but I reject this bullshit entirely. These people are smart enough to know how psychosomatic ideology is strongly negatively experienced by patients. Hell, it's all over the literature, filled to the brim with knowledge of how those delusional fantasies, which are meant to reassure them, not us, are rejected by most. In fact it's been the main body of work for decades: how to turn that frown upside down.

They know. This is just a pitiful excuse that both shows how, as Arnie said, they are utterly clueless about human behavior and how they don't bother paying attention to things happening right in front of them. All of those things have been said millions of times to them. Hell, accounting for the last century, easily hundreds of millions. No one is that clueless. This is malfeasance, not normal incompetence.

This is very close to the language of abusers. "I thought she liked being roughed up a little". Screw. This. If they ever truly were motivated to improve their patients' experiences none of this would have ever happened because that experience told them explicitly that this is harmful. It's been happening for over a century, there are zero excuses for this that don't depend on incompetence so extreme it has to be matched with immediate resignation from the profession.

Feigning stupidity while claiming god-like powers, declaring that if they don't know about it now, then it can't possibly be real, is truly a category of hubristic ineptitude of its own.

 

Just because it's so relevant, here's this interaction with Sharpe on the old Twitter about this exact problem. It exemplifies the rot and corruption at the heart of this industry. They know. They don't care because they write down everything and can pretend like up is down, or however they want it to be.

"Well if that were true it would be terrible. But it is not."

 

Maybe showing your doctor your own post here is even better. This post says it all.
Do you have laws to have something removed from your dossier?

Please take good care of the parent of your children, YOU!!!

I asked my GP to remove ME/CFS from the illness hystory in referral letters, he did.
I'm seeing a neurologist in a few weeks, now ME is in the tekst of the referral.
My GP will be getting an earful when I see him again.

 

I have never understood this idea that a patient with a long list of symptoms must be a hypochondriac. People can have more than one illness at a time and, particularly in autoimmune diseases, once a patient has one of them they are at greater risk of developing another one than a patient with no known autoimmune diseases at all.

...

There are so many comments in the paper that ring true for me. For example, if I think I need a doctor but can't prove that I'm ill i.e. there is no swelling, no inflammation, no fever, no rash, no unusual lumps, then I think doctors won't believe me so there is really no point in trying to get an appointment with my surgery or going to hospital to try and get help. I would do anything to avoid doctors rather than see one if there was nothing to see. I already treat a couple of my own medical problems and pay for my own testing and treatment.

I always think in any talk with a member of staff of the NHS, whether they are receptionist, nurse, doctor or whatever, that I can't predict the consequences and repercussions of what I say, so again I try not to go anywhere near them.

For example, I once had a minor accident (I fell downstairs at home). Parts of one foot swelled up and became very discoloured, and I decided I ought to get an x-ray. At the hospital, after the x-ray, I was told I had broken two toes, but there was nothing that could be done and I just got the toes taped together to reduce movement. I was happy with that result. I knew what was wrong, knew there was unlikely to be any long-term consequences, and I went home.

The next time I went to my GP surgery I saw a doctor for reasons that had nothing to do with my toes (which had completely healed with no issue and my foot was normal colour again). The doctor drew attention to what had happened, and mentioned that I had broken a toe. I said I was told I'd broken two toes. He immediately bristled up and said "No, it was just one toe" and he was clearly annoyed with me for not immediately agreeing with him. It was of no long-term consequence, and I immediately backed off so that I didn't anger him further.

I feel in conversations of that type like a medieval servant in front of a bad-tempered king and as a servant I am well aware that the king can make me suffer or, literally, die. There are consequences in dealing with doctors and I have no way of protecting myself from those consequences. The power imbalance between me and medical staff is insurmountable. I can't change the flags on my records. I am almost always as non-confrontational as I can be because I am prescribed medicines that make me feel better, including ones for chronic pain, and I am terrified that they will be taken away. It took me about 40 years to be prescribed medicines to help me control chronic pain. I assume that every time I asked for help with the pain it was yet another flag on my records suggesting that I'm a drug seeker.

I have also noticed in any situation where I need an appointment or help that I can be left waiting because I am bottom of the heap in terms of severity urgency.

Another issue is that some of my NHS records where someone has written up a serious problem I had, the details have been mangled beyond belief. For example, aged 13 I had a very serious medical problem that caused me very severe pain for a month. My medical records reduced that to 24 hours. The organ that had to be removed isn't mentioned - and its absence wasn't noted in my records for 20 years. Six years after that surgery where I lost that organ another surgeon recorded that the now-missing organ was perfectly healthy and had no problems. The repeated incompetence I come across in the profession is just mind-boggling. How can people ever trust them?

 

During my latest encounter with a BPS physiotherapist, he claimed that if you had a long list of symptoms, it was most likely that it was from the same source. He also claimed that the source was very likely to be your nervous system (he really just meant some kind of FND).

I ditched him, but not before he caused a massive crash lasting for months.

 

This may often be wrong but could sometimes be right too. I went to over 100 physiotherapist appointments with maybe problems in 20 different spots. Even though I had stopped playing sports and was just either doing a bit of swimming or a bit of cycling so shouldn’t have had so many injuries. It would have been useful if some sort of systemic diagnosis was considered. I ended up diagnosing myself but only after getting severe.

 

My mind literally went there from how your started explaining it, in a slight bit of a satirical exaggeration, very aware that this is a possibility. Amazing. They could have gone to "the organ has regenerated, it's a miracle!" and it would only be slightly more absurd. Just barely.

It's actually very hard to satirize medicine at times. For a long time it used to be lawyer jokes, but medicine can be just as inept and it's so much less funny considering how real the consequences are. But just as ridiculous.

 

It makes me laugh when you hear press releases or articles suggesting the nhs has useful data eg for big data

someone should have told those in the nhs/gps/HCPs who’ve been using the notes for very different purposes/agenda than ‘an accurate big picture fir the purposes of science’ if that was the intention

all any big data from what I know of the nhs notes tells us more about what staff decided to write and do when given access to notes that make or break other peoples lives and ‘no one’s watching/pulling you up if it is wrong so you won’t get caught’ + other pressures on said staff (like what they should have done but didn’t, or top-down cost saving choices being justified by pretending something wasn’t needed)

they certainly weren’t and aren’t normally done pre hoc and without prejudice as the big data stuff would pretend

it’s always fun when someone has so much power vs patient in this dynamic that whether an organ exists or not in your body is down to you assuming the person who took it out didn’t lie or miss it but that the person who claimed they checked it years after it wasn’t there did - and you have to focus on in a conversation which is the correct person to be seen placating /the right answer over the truth

At least the gp made it nice and clear to you what they saw the right answer would be on his many broken toes you had