Medically unexplained or not? Be aware of a somatic cause of Medically Unexplained Symptoms, 2022, Hilderink and van Vugt

Abstract

In 2 cases of men aged 26 and 55 respectively we illustrate the complexity of MUS patients since in both cases a somatic diagnosis was missed. The first patient presented with an inability to walk and persistent pain. Because of his symptoms he lost his job, had depressive moods and used alcohol and cannabis. His physical complaints were considered as a functional neurological disorder. Examination however revealed an avascular necrosis of the femoral head on both sides. After surgical treatment he is now slowly recovering. The second patient had developed sexual and bladder dysfunction 10 years ago. More recently he developed problems walking, speaking and swallowing. No neurological explanation had been found and the urologist prescribed self-catheterisation 6 times daily. Examination showed signs of multiple system atrophy. Patient was referred to a specialized neurologist who confirmed this diagnosis and now he can better accept his burden.

Only PubMed link to abstract available at time of posting, https://pubmed.ncbi.nlm.nih.gov/35499512/

 

Surely missing one or more diagnoses in patients must be a guaranteed outcome when making MUS a diagnosis in its own right? There may be some doctors who truly are thorough in investigating an MUS, but there will probably be a large number who look for the obvious, don't find it, and declare the symptom(s) to be MUS.

I also notice that the two examples given are both in men. I'm sure that most undiagnosed health problems occur in females. How many of them are allowed a second or third or fourth examination to look for a cause of their MUS? The idea that sick women are all depressed, attention-seeking hypochondriacs is still alive and well and very, very common. And any man who has symptoms believed to be common in women is also likely to find themselves being declared to be suffering from "MUS".

 

One thing I'm left wondering about is the second fellow with multiple system atrophy. It didn't sound like there is any treatment for this, just acceptance.

Agreed, @Arnie Pye. My experience and past university studies tell me that women are the more likely candidates to receive a MUS label.

If one starts with a MUS label, for example, ME, there's often nowhere to go but down when seeking medical care for symptoms unrelated to ME.

 

One of the main ideas behind psychosomatic ideology is to test as little as possible, to end testing as early as possible, in fact to avoid testing at all.

So yeah, it's a feature. By definition many diagnoses will be missed. For the same reasons allowing industries to self-regulate compliance with the law happens explicitly to bypass this compliance, it's the intended goal.

Because the primary goal is to reduce costs. Tests cost, so they are reduced, ideally eliminated. The premise of the ideology is to explicitly sacrifice people's lives and well-being to reduce costs. It's not even subtle. But it's coated in BS language so it's all good, people can pretend they're helping.

 

Yes, @rvallee you speak the brutal truth.

Imagine someone denied more expensive testing, because it's assumed they are a MUS person. Now imagine that person many years on getting that expensive in-depth testing they knew they needed and had asked for a long time ago.

Imagine that person's feelings of anger and betrayal when it's found they have a documentable and treatable biomedical disease revealed by this once denied testing.

Eventually, this will be the case for a number of pwME.

 

Also, as above, imagine all the hell that supposed pwMUS has gone through with the disability insurance industry, government assistance programs, doctors, friends, colleagues and family.

Denied the very testing that would definitively support a biomedical diagnosis and open the door to more care and understanding from many, if not most involved.

 

Rings true yeah. I also think this is a thing where the way we govern ourselves is very ineffective. The ethical implications aside for a moment, I can't imagine an enormous group of people not contributing to the economy being a plus.

Also if you look at CBT/GET-treatment costs. My stint at Het Roessingh in the Netherlands cost me 15.000 euro's(insurance covered it). That was in 2005. In that particular part of the institution 6 patients were treated for a period of 5 weeks. Now let's say they can treat about 8 groups there for 5 weeks every year. That's 8x6x15.000=720.000 in cost every year for at least a 20-year period. So about 14 mil that could've gone to biomedical research from that little department alone. Talking about roughly 1000 patients they treated there in about 20 years time.

Even at Het Roessingh they had a similar department for Fibromyalgia and then they had a bigger department for youth that was treated more intensively. I think 40 mil in total expended on those 3 departments is a very conservative estimate over that 20-year period.

In the Netherlands alone we have a bunch of additional treatment facilities that are similar in nature. We have less intensive facilities as well. The amount of money wasted is humungous. Now extrapolate that to all the similar facilities world-wide that have done the same.

If all that money were spent on biomedical research I imagine they at least would have found ways to get a good number of us up and running again. Which would give a much better return on investment than fobbing us off with bs treatment.

 

We really need data on how many people diagnosed with an MUS turn out to have a treatable medical condition, and what the costs, including worsening health and preventable deaths and subsequent legal actions, are of being misdiagnosed as MUS resulting in delaying or failing to treat a missed biomedical condition.

I always cite the example of a friend who experienced severe pain on moving following open heart surgery. She was told that the pain had nothing to with the successful operation, rather it was purely psychological. She was repeatedly refused further medical investigations but given ‘counselling’ instead. Fortunately she ignored the pressing advice to push through the pain and to exercise, as the eleven inch stainless steel surgical implement in her chest cavity could have punctured a vital organ. However, the numerous doctors visits and the specialist psychological interventions, did not help during the two years it took her to find a doctor who finally agreed to a simple chest X-ray. She was lucky the psychosomatic mis diagnosis did not seriously harm or even kill her.

Not one of the many doctors she saw ever apologised, even when the court case was over, for their misdiagnosis based on no meaningful medical investigation and ignoring the patient’s reported symptoms.

 

A colleague's sister was told her sudden concerning neurological symptoms were "all in her head". Her parents were told by a specialist that she was "faking it for attention".

It turned out she had rapidly progressive MS and was given less than 12 months to live.

Her parents came from a cultural background that had a strong respect for doctors and they thus gave some credence to the advice that she was "faking it" which essentially destroyed that family.

 

The only way I see this happening is with patients funding it. No institution would ever approve such a study, it's too confrontational, no one wants to risk exposing the lie. And it would need institutional support, working through clinical networks and directly engaging with patients and records.

But of course with so little money available, given the general poverty of our population, it'd be a waste of funding since it would need to be a massive population study, working directly with institutions working under this paradigm, expecting them to find fault in things they have been doing for years. It would be very expensive, only a large healthcare system can do this.

It's as likely as asking a corrupt police force to investigate themselves and acknowledge wrongdoing. Actually, strike that, it's even less likely, because police corruption is a problem that is generally acknowledged as bad.

And that's the whole game. This is why nothing ever changes, when a system is unable to acknowledge its own flaws, even minor ones, let alone major ones. There is simply no genuine accountability anywhere in medicine, only compliance.

 

100% agree. It's basic isn't it. To the point you assume that they would have done at least some of it, by virtue of the system must log these things somewhere. How many who go into what is a known dumping pot were diagnosed with something else later on - including comorbidities and misdiagnosis (and timeframe that took). So that these are flagged and studied where relevant (e.g. if there is a link or it's a differential/common one to look out for).

I'm shocked that we don't even have proper coding so everything with it is accounted for. Death rates. There should be progression stats and deaths even if it was due to something else - particularly noting the misdiagnosis rate as well as issues not just with treatment but adjustments to keep people for getting worse etc. I do not see how it is justified by systems as it is basic to science, understanding of illness and care.

 

This is a memorable example @Peter Trewhitt.

Amazing your friend got through this physically. But what an ordeal!

If only someone had believed her early on, and done a chest X-ray.

I know of two other times where chest and abdominal X-rays were vital, but never thought of, nor pursued by medical personnel.

It seems so logical - pain in the chest, do an X-ray, but instead deny this test on the basis of a MUS belief.

 

Would this stand more of a chance in countries where they have a " no blame" system for medical mistakes ?
Blame seems to play a huge part in mistakes and cover ups in UK.

 

I think in a way that may have already occurred in an extent with the PWME who also have POTS.
The first I heard of POTS was in the late 90s when a private doctor with an interest in ME was using the poor man's TTT in his office.
However this was never taken up by the NHS and actively discouraged by the old NICE guideline.
Around 2010 .I asked for POTS investigations through a CFS clinic and a NHS cardiology dept and was turned down.
It wasn't until I had a private test when living abroad that I got a formal dx.

 

I don’t know about the UK or the US etc but I’m a big believer in the no blame approach to management.
Some years ago, went to a course as a first responder. Run by a senior police trainer. Told us that we had a great culture, one that the police would really benefit from /needed more of:
We put ourselves in high stress, high risk situations and do the best we can, if we”re not the leader we think like we are and offer what we’d want. But most important is the debrief and the stats. After every callout we talk about it. We always look for ways we could have done it better, discuss, figure out how to make sure that’s how we’d do it next time. And record what happened, any near misses or things to follow up (eg someone in the crew was emotionally affected or should have been). We look at those stats every year and see if there are any patterns we can manage out of existence. Because the best emergency response is prevention.
But none of that would work, not even a little bit, if there was a hint of blame. We don’t do blame, we do better.

Someone once told me that my reaction to a person whose relative was a patient was really well trained. I was a bit surprised, training? No, not training, experience and understanding: people react to emergencies in ways that even they would be shocked by. But that’s why we’re there: to help them navigate the worst day/night of their life. It’s not about me. It’s not about blame, or bad behaviour, or …any of that. It’s about looking at what’s not working and fixing that. (And if it’s still not working, keep looking, listening, problem solving).

A culture in medicine where every patient’s events are reviewed to see where a successful diagnosis could have been found sooner depends on a freedom from blame and a focus on excitement about how we can do better.
TBH I’m scared that in a search for accountability we’re losing sight of the actual goal: improvement.

Do I dislike the fact that this is two young men? Yes. And the implication that MUS is a diagnosis at all (I would see it as a category for admin purposes - like UFO, it doesn’t/shouldn’t mean green men and saucers it means we’ve not identified it yet).

But it is good that we’re publishing things that remind the complacent that categorising someone is not the end, it’s a first step, always up for review.

(I’ve known someone who died of an unrelated cancer because everyone assumed it was the first cancer. A blood test would have told them otherwise. But they thought they had her categorised already. It shouldn’t matter what the first category you put someone in, it matters that you keep reviewing it, doing better.)

 

[tangent alert]

I was unaware of even the possibility of orthostatic issues in ME for the first twenty years I had the condition even though I had seen a range of consultants, participated in a number of research projects and had a course of ‘treatment’ by a specialist CFS/ME service.

Some ten years ago I became aware that activity upright more readily triggered my PEM than activity sitting down and in turn than lying down. I had assumed that the additional physical exertion from lying through sitting to standing was the reason, but it was only when I became aware of the possibility of orthostatic intolerance though online patient groups that I realised it better explained my issues than the simple exertion required to sustain different postures. This was particularly so as my ME worsened and standing started to result in fainting, also with bending forward to weed in the garden becoming impossible for more than a couple of minutes.

Many, if not most of us, are not given the basic information required to monitor and balance our own activities and activity levels.

 

Back in 2001 misdaingosis was studied by:

Nimnuan, Matthew Hotopf & Simon Wessely

https://www.sciencedirect.com/science/article/abs/pii/S0022399901002239?via=ihub

The first author published two papers on the subject both showing high levels of misdiagnoses.
Also, Stone did a review of 'hysteria' and showed 4% misdiagnosis rate.

Future 'hypothesisers' like Richard Brown in 2013vused the idea of low levels of misdiagnosis to push their psychosomatic woo view on all of this. I disputed this. I had no response from him afterwards. the idea that misdiagnosis might cause harm seems to bypass some. Baffling. Kyboshed several decades of my life!

I routinely challenge MUS within the NHS/IAPT when I see 'MUS' anywhere. Not seen it for a while TBH. Mike Scott, myself and Keith G published in Journal of Health Psychology in 2021 dismissing the CBT model of MUS. Nothing, literally nothing since. Word gets about in networks that MUS is toxic. If anyone is seeing MUS within NHS, let me know. I can write and politely point out that this is not helpful....

I do see more FND on pt's notes now, if pt's have been unlucky enough to see a neurologist who thinks this is helpful.

 

From the first page of results from a Google search.

"Possible causes of medically unexplained symptoms
...
For others, the symptoms may be part of a poorly understood syndrome, such as:

• chronic fatigue syndrome (CFS) – also known as ME
• irritable bowel syndrome (IBS)
• fibromyalgia (pain all over the body)"

https://www.nhs.uk/conditions/medically-unexplained-symptoms/


"Long Term Conditions and Medically Unexplained Symptoms

Two thirds of people with a long-term physical health condition also have a co-morbid mental health problem, mostly anxiety and depression. In addition, up to 70% of people with Medically Unexplained Symptoms also have depression and/or anxiety disorders. These common mental health disorders are detectable and treatable."

https://www.england.nhs.uk/mental-health/adults/iapt/mus/


Medically Unexplained Symptoms, https://www.elft.nhs.uk/medically-unexplained-symptoms

This last one 'helpfully' includes this

"Hear from our international and local experts on Medically Unexplained Symptoms including latest research and developments in Somatic Symptom Disorder.

Professor Rona Moss-Morris (Professor of Health Psychology, National Advisor, MUS – IAPT, King’s College London); Professor Peter Henningsen (Professor of Psychosomatic Medicine, University of Munich); Kevin Mullins (Head of NHSE); Dr. Phillip Moore (Chair Mental Health Commissioners Network, General Practitioner and Deputy Chair Kingston CCG); Professor Claas Lahmann (Professor of Psychosomatic Medicine, University of Freiburg, Germany)."

 

Good spots. These need challenging. No place on NHS websites.....