Is it true that more than half of medical consultations are for MUS? A look at the evidence.

[Trish]

Continuing from my previous post looking at your paper, @Diane O'Leary you say this:

Findings at that high end have been echoed by several additional studies (Korber et al. 2011; Steinbrecher et al. 2011)

Those two papers refer to different aspects of the same study, as noted in post #3 on this thread.

As I noted in that post, as I understand it, the 76% in the first paper refers to number of MUS symptoms, not number of patients with MUS, which was about 23%. Have I gone wrong somewhere?

 

[Dx Revision Watch]

The garbage about there being over 50% of patients with MUS and/or somatoform disorder must be compounded by the fact that there is no standard way of feeding back an accurate diagnosis to a doctor who found nothing wrong with the patient. Many cases of MUS must be solved eventually, not least because some cases of MUS must be life-threatening. But the doctors who found nothing wrong just continue on their merry way assuming that their rate of misdiagnosis or missed diagnosis is much better than it really is.

Might be of interest:

https://www.kingsfund.org.uk/sites/default/files/Diagnosis and referral.pdf

The quality of GP diagnosis and referral

Catherine Foot Chris Naylor Candace Imison

This paper was commissioned by The King’s Fund to inform the Inquiry panel.

 

[ME/CFS Skeptic]

Thanks for looking at this @Trish .Had a quick look for other MUS-prevalence studies (it's hard to find them because they keep changing the name FSS, MUS, PPS etc.). Have only had the time (or rather the energy) to read the abstracts. It seems that most studies took place in primary care, where there is enormous variability in percentages reported. Has anybody found other studies of MUS prevalence in specialized care, besides the one from Simon Wessely's team?

Just a thought: if MUS-prevalence would turn out to be much higher in primary care than in secondary or tertiary care, that would be rather contrary to what MUS-proponents are saying. It would mean that patients with persistent MUS need a more thorough clinical investigation or care from someone who understands their disease, rather than CBT, exercise or antidepressants.


MUS-prevalence studies:

Secondary care:

Reid S, Wessely S, Crayford T, Hotopf M. Medically unexplained symptoms in frequent attenders of secondary health care: retrospective cohort study. BMJ. 2001 Mar 31;322(7289):767.

McGorm K, Burton C, Weller D, Murray G, Sharpe M. Patients repeatedly referred to secondary care with symptoms unexplained by organic disease: prevalence, characteristics and referral pattern. Fam Pract. 2010 Oct;27(5):479-86.


Primary care:

Peveler R, Kilkenny L, Kinmonth AL. Medically unexplained physical symptoms in primary care: a comparison of self-report screening questionnaires and clinical opinion. J Psychosom Res. 1997 Mar;42(3):245-52.

Verhaak PF, Meijer SA, Visser AP, Wolters G. Persistent presentation of medically unexplained symptoms in general practice. Fam Pract. 2006;23(4): 414–20.

Körber S, Frieser D, Steinbrecher N, Hiller W. Classification characteristics of the Patient Health Questionnaire-15 for screening somatoform disorders in a primary care setting. J Psychosom Res. 2011 Sep;71(3):142-7.

Aamland A, Malterud K, Werner EL. Patients with persistent medically unexplained physical symptoms: a descriptive study from Norwegian general practice. BMC Fam Pract. 2014;15:107.


Studies discussed by Trish

Nimnuan C, Hotopf M, Wessely S. Medically unexplained symptoms: an epidemiological study in seven specialities. J Psychosom Res. 2001 Jul;51(1):361-7.

Kroenke K, Mangelsdorff AD. Common symptoms in ambulatory care: incidence, evaluation, therapy, and outcome. Am J Med. 1989 Mar;86(3):262-6.

Steinbrecher N, Koerber S, Frieser D, Hiller W. The prevalence of medically unexplained symptoms in primary care. Psychosomatics. 2011 May-Jun;52(3):263-71.

Swanson LM, Hamilton JC, Feldman MD. Physician-based estimates of medically unexplained symptoms: a comparison of four case definitions. Fam Pract. 2010;27(5):487–93.

 

[rvallee]

It seems to me this is much easier.

Ordinary headache is medically unexplained, despite various unconvincing explanations being popular (tension etc).

Everybody gets ordinary headaches.

So the prevalence of medically unexplained symptoms is 100%.
This is, if we are defining MUS simply as medically unexplained symptoms.

But clearly that is not what is meant by MUS for those who make a living out of it. They mean symptoms that are unexplained but are due to somatisation. This is clearly a contradiction because they are now explained.

So the prevalence of MUS is 0%.

You might think this was muddled thinking, or manipulation of words. Well, at least that seems to be the standard approach for MUS. If others can muddle and manipulate, why not me?

That is roughly the explanation given when trying to frame the symptoms of ME/CFS/WHATEVER as catastrophizing ordinary aches and symptoms: that everyone gets them. Those normal aches and weird symptoms are medically unexplained. Everyone gets them. Hence 100% MUS. !QED.

The issue is with unexplained. It's completely meaningless, especially given the way science progresses. A drone is a UFO when seen from far enough away. So is a bird. All it says is you haven't identified it yet, likely because it's just too far and you don't have good enough resolution to identify it.

That's way too much internal contradiction. This ideology is being implemented as validated but it hasn't even gotten to step 1 yet, it's still stuck at step 0 and pretending it's a formality to prove any of it, just deploy it and it will work. A good working theory cannot have this much internal contradiction, it's madness to pretend this stuff is ready for the real world.

 

[Diane O'Leary]

Like the Lancet?


If there is something I learned since becoming sick, it is that you always have to check by yourself.


By this standard, we should trust Wessely and ignore the Cochrane rebutal made by @Tom Kindlon and Robert Courtney.

@Cheshire I'm sure not suggesting that you shouldn't check things for yourself. I think the research of ME advocates is so astute that it actually achieved a change in professional consensus - and I've written that, publicly. If you read more carefully you'll see that I'm not saying you should believe everything that's published. I most definitely would never say that.

I'm saying that you need to know what kinds of things you can trust in a publication and what kind you cannot trust. My article begins with a review of research on prevalence of MUS, then it settles on a middle figure as a reasonable representation of current opinion, defending that figure with policy and educational documents. So the figure doesn't tell you what's true about the prevalence of MUS. It gives you a moderate picture of what professionals who work on MUS believe about prevalence. Given the quality of the journal, and the lack of pushback in the critiques, you can trust that this figure represents typical understanding for professionals working with MUS.

I have never suggested that anyone should trust it just because it's published in a good journal. I'm saying be astute about which things you can and cannot trust. This debate about the 50% figure is not deserving of your time and energy, which are valuable. You'd get a lot more bang for your buck if you focused on the substance of the article.

 

[rvallee]

The garbage about there being over 50% of patients with MUS and/or somatoform disorder must be compounded by the fact that there is no standard way of feeding back an accurate diagnosis to a doctor who found nothing wrong with the patient. Many cases of MUS must be solved eventually, not least because some cases of MUS must be life-threatening. But the doctors who found nothing wrong just continue on their merry way assuming that their rate of misdiagnosis or missed diagnosis is much better than it really is.

Especially given the abundance of literature showing how common it is for patients with complex problems to receive entirely different diagnoses from different specialists, sometimes as many diagnoses as specialists. Which of those are correct? If any?

Some of those even give the wrong impression that there now is an explanation, even though it's possible that none of them are actually valid. And usually there is an explanation, but sometimes it will be diagnoses in which the symptom is known to be associated with but is still unexplained, like pain and fatigue commonly are. Is the fatigue from MS explained? Is the pain from RA explained? We know it's part of it, but what does explained mean?

Then again, this is an ideology that aims to deal with medically unexplained symptoms by... explaining them. Which is supposed to be the entire point and completely self-contradictory. So not exactly the sharpest knives in the drawer.

 

[Diane O'Leary]

Thanks for looking at this @Trish .Had a quick look for other MUS-prevalence studies (it's hard to find them because they keep changing the name FSS, MUS, PPS etc.). Have only had the time (or rather the energy) to read the abstracts. It seems that most studies took place in primary care, where there is enormous variability in percentages reported. Has anybody found other studies of MUS prevalence in specialized care, besides the one from Simon Wessely's team?

Just a thought: if MUS-prevalence would turn out to be much higher in primary care than in secondary or tertiary care, that would be rather contrary to what MUS-proponents are saying. It would mean that patients with persistent MUS need a more thorough clinical investigation or care from someone who understands their disease, rather than CBT, exercise or antidepressants.


MUS-prevalence studies:

Secondary care:

Reid S, Wessely S, Crayford T, Hotopf M. Medically unexplained symptoms in frequent attenders of secondary health care: retrospective cohort study. BMJ. 2001 Mar 31;322(7289):767.

McGorm K, Burton C, Weller D, Murray G, Sharpe M. Patients repeatedly referred to secondary care with symptoms unexplained by organic disease: prevalence, characteristics and referral pattern. Fam Pract. 2010 Oct;27(5):479-86.


Primary care:

Peveler R, Kilkenny L, Kinmonth AL. Medically unexplained physical symptoms in primary care: a comparison of self-report screening questionnaires and clinical opinion. J Psychosom Res. 1997 Mar;42(3):245-52.

Verhaak PF, Meijer SA, Visser AP, Wolters G. Persistent presentation of medically unexplained symptoms in general practice. Fam Pract. 2006;23(4): 414–20.

Körber S, Frieser D, Steinbrecher N, Hiller W. Classification characteristics of the Patient Health Questionnaire-15 for screening somatoform disorders in a primary care setting. J Psychosom Res. 2011 Sep;71(3):142-7.

Aamland A, Malterud K, Werner EL. Patients with persistent medically unexplained physical symptoms: a descriptive study from Norwegian general practice. BMC Fam Pract. 2014;15:107.


Studies discussed by Trish

Nimnuan C, Hotopf M, Wessely S. Medically unexplained symptoms: an epidemiological study in seven specialities. J Psychosom Res. 2001 Jul;51(1):361-7.

Kroenke K, Mangelsdorff AD. Common symptoms in ambulatory care: incidence, evaluation, therapy, and outcome. Am J Med. 1989 Mar;86(3):262-6.

Steinbrecher N, Koerber S, Frieser D, Hiller W. The prevalence of medically unexplained symptoms in primary care. Psychosomatics. 2011 May-Jun;52(3):263-71.

Swanson LM, Hamilton JC, Feldman MD. Physician-based estimates of medically unexplained symptoms: a comparison of four case definitions. Fam Pract. 2010;27(5):487–93.

It might be helpful to note that when it comes to prevalence MUS is not the same as somatoform disorder, and neither is the same as FSS or groupings of that kind. I mean, all of those are based on the same BPS reasoning, but they capture different patient groups. MUS is a non-DSM psychosomatic diagnosis, so there are a whole lot more MUS patients than somatoform patients. MUS patients are often described as pre-somatoform or abridged somatoform, so MUS is basically an extremely common everyday form of somatization that's not up to the level of a DSM diagnosis.

There are a lot of somatoform patients who don't have FSS or central sensitivity syndromes or anything like that, so prevalence will be different for those too.

On the prevalence of MUS, there are thousands of articles.

 

[Wonko]

They may all have different names but what they all seem to mean is 'timewaster', don't waste resources on them, slap a label on them, and on their records, to stop others from 'wasting' resources on them.

Just different names for the same shoddy treatment of people who went to a 'medical professional' for help.

 

[Diane O'Leary]

Continuing from my previous post looking at your paper, @Diane O'Leary you say this:



Those two papers refer to different aspects of the same study, as noted in post #3 on this thread.

As I noted in that post, as I understand it, the 76% in the first paper refers to number of MUS symptoms, not number of patients with MUS, which was about 23%. Have I gone wrong somewhere?

Thanks Trish for your questions. You're absolutely right that some research focuses on number of symptoms, while other research focuses on number of patients. Researchers generally fail to note that difference in comparisons and that's really a huge problem. Research on MUS is very unscientific - in large part that is the point of my article.

I'm not sure it's useful to run through all these figures in detail. That's not going to change the big picture. The very extensive process of review and critique for the article did not find any reason to challenge the 50% figure as representative of current understanding among professionals who work with MUS. I think that means you can trust that this is what they generally believe.

I think they're right that roughly 50% of outpatients' symptoms are unexplained, as in, undiagnosed. It's just that they equate this with psychosomatic diagnosis - and there's a serious problem with that. The last part of the paper shows why it's both unscientific and unethical to equate diagnostic uncertainty with psychosomatic diagnosis. That's the part that really matters.

 

[Jonathan Edwards]

Given the quality of the journal, and the lack of pushback in the critiques, you can trust that this figure represents typical understanding for professionals working with MUS.

No you cannot Diane, as members here have worked out for themselves.
And anyway the 'professionals working with MUS' are pretty much by definition people with no understanding - especially as I gather the name has been abolished in the US and the psychosomatic implication debunked.

I cannot really understand what you are trying tog get at in the MUS article - which I have now read. If we are agreed that the acronym MUS, used to imply a somatoform tendency in an individual (and in fact not the symptoms themselves in any important sense), describes a non-existent entity, how can that entity pose an ethical problem? If, on the other hand, as you seem to, we talk about medically unexplained symptoms in small letters used in the non-term-of-art- vernacular sense then why would anyone want to lump them together. Why have a policy for headache, tummy ache and leg ache when there is every reason to think they are quite separate problems, even if we are not quite sure of their causes?

Why give credence to a psychological empire-building exercise none of us believe in by quoting figures that are laughable from the empire-builders. I just don't get it.

And you obviously are arguing from authority. Viz the quote above. Whatever is written in journals is of no interest to anyone other than inasmuch as it influences what physicians on the ground take seriously in practice. So what matters is what physicians take seriously in practice. Publications in journals are otherwise of no medical or ethical interest.

 

[Trish]

I'm not sure it's useful to run through all these figures in detail. That's not going to change the big picture.

Thank you for your concern about how I choose to use my time and energy.

Strange though it may seem to you, I am finding it fascinating digging into the numbers and choose to wile away a few hours lying in bed trying to track the references.

I accept your statement that in some circles the belief is that 50% is accurate. I want to dig into the evidence used to back up that statement.

So far the only figure I have seen that is over 50% is the Wessely 52%, which, as I've already explained, needs to be unpacked for what it is actually saying.

The papers you quote as showing figures even higher than that don't seem to be saying that at all, as I've said in the above posts. I am puzzled, and ask you again, where have I gone wrong?

All the other papers I've looked at, which are mostly referenced in your paper, seem to show much lower figures, so how did you arrive at 50% as your middle figure?

 

[Lisa108]

A journal of this ranking does not present controversial figures as factual. In a low ranking journal you might need to check, but in a top ranking journal you can trust that a core figure will be uncontroversial for the field.

It's terrific that you guys are so astute about research, and able to explore the validity of what you read. It's very important, though, to see the difference between a non-professional looking for a handful of easy access papers and the process of peer review and commentary for the top ranked journal.

It is very common on s4me for objectivity to be obscured by loyalty to factions within the advocacy community. This is really not helpful to your understanding, to your cause, or to your spirits.

Dear @Diane O'Leary,

these are the bits I found most "controversial", to say the least. You might want to reconsider these statements, as they are partly untrue, partly (they sound) offensive and presumptuos.

You seem to take critique very personally. People here are interacting on eye-level. And there are more "professionals" on this board than you seem to be aware of. Experts from various disciplines. And they all contribute, which is great, considering the health constrictions of most.

Out of necessity members of S4ME developed an interest in re-analyzing studies.
So you can take the opportunity to discuss your work. You'll find people here are inherently interested, science-savvy, sceptical and friendly. They admit a mistake easily, when proven wrong. We are not loyal to factions, we are loyal to facts.

So, I hope you'll stay around, and adopt the style of S4ME.

 

[Trish]

Keith Geraghty recently complimented Hartman and Rosmalen (both MUS-researcher who were on the Dutch health council) for citing lower prevalence estimates of MUS in primary care:

Thanks for that Michiel. Here's the paper Keith links:

Symptom management for medically unexplained symptoms in primary care: a qualitative study (2019)
It is not in itself a data collection study but it quotes the figure as 3% to 20% in primary care and gives references.

 

[Diane O'Leary]

No you cannot Diane, as members here have worked out for themselves.
And anyway the 'professionals working with MUS' are pretty much by definition people with no understanding - especially as I gather the name has been abolished in the US and the psychosomatic implication debunked.

I cannot really understand what you are trying tog get at in the MUS article - which I have now read. If we are agreed that the acronym MUS, used to imply a somatoform tendency in an individual (and in fact not the symptoms themselves in any important sense), describes a non-existent entity, how can that entity pose an ethical problem? If, on the other hand, as you seem to, we talk about medically unexplained symptoms in small letters used in the non-term-of-art- vernacular sense then why would anyone want to lump them together. Why have a policy for headache, tummy ache and leg ache when there is every reason to think they are quite separate problems, even if we are not quite sure of their causes?

Why give credence to a psychological empire-building exercise none of us believe in by quoting figures that are laughable from the empire-builders. I just don't get it.

And you obviously are arguing from authority. Viz the quote above. Whatever is written in journals is of no interest to anyone other than inasmuch as it influences what physicians on the ground take seriously in practice. So what matters is what physicians take seriously in practice. Publications in journals are otherwise of no medical or ethical interest.

I know that you do not have expertise in ethical reasoning @Jonathan Edwards, but I think you should be expected to accurately determine the central ideas in a paper from AJOB.

After the review of research, the article notes that there's a very substantial, very clear difference between symptoms that are unexplained and symptoms that are psychosomatic. Then it defines terms. From that point "MUS" is used in the article to mean "symptoms that are not yet explained". The word "psychosomatic" (or maybe it's "psychogenic") is used to mean "symptoms with primarily psychological causes". If you don't take note of those definitions, you cannot make any sense of the rest of the article. This is why you are railing against ideas that I have never written.

Once the article has established the difference between unexplained symptoms and psychosomatic symptoms, it then explains in detail why it's unscientific, and unethical, to equate these two things. This article shows a very large, new medical audience that the BPS camp is dealing with "MUS" in a way that's unscientific and extremely harmful for patients.

Again, I think it's really important for the good people at s4me to see how distorted your version of my article is. And, again, this is not credible discourse.

 

[Diane O'Leary]

Thank you for your concern about how I choose to use my time and energy.

Strange though it may seem to you, I am finding it fascinating digging into the numbers and choose to wile away a few hours lying in bed trying to track the references.

I accept your statement that in some circles the belief is that 50% is accurate. I want to dig into the evidence used to back up that statement.

So far the only figure I have seen that is over 50% is the Wessely 52%, which, as I've already explained, needs to be unpacked for what it is actually saying.

The papers you quote as showing figures even higher than that don't seem to be saying that at all, as I've said in the above posts. I am puzzled, and ask you again, where have I gone wrong?

All the other papers I've looked at, which are mostly referenced in your paper, seem to show much lower figures, so how did you arrive at 50% as your middle figure?

It's a good question, Trish. It might help to know that the higher estimate in Kroenke and Mangelsdorf (in the body of the paper) was incredibly influential. That's a big part of this - it's not just what the papers say. It's also a matter of knowing which ones are really influential and which are peripheral. On this point, note that the JCPMH estimate is not just another research paper. It's a policy document - so no matter what the research says, this is the figure that drives UK health policy.

Note too that the Up to Date research review system - which you won't be able to access - tells doctors that "more than 50% of patients are not suffering from a medical condition", or something like that. This is the system that summarizes current consensus on everything in a way that doctors can access while they're in the exam room or hospital hallways.

In any case, I can't go through that whole section of the paper here. Is there a part of that section that you're finding unclear?

 

[MSEsperanza]

Apologies for just popping in. Only was able to skim the thread.

Just wanted to say what interests me about Trish's and Keith Geraghty's questioning those MUS numbers.

I think it would be an important finding if the numbers of people seeking medical care and being diagnosed with MUS were grossly exaggerated by certain people—especially if those experts who exaggerate the numbers are justifying their proposed MUS treatments or overarching concepts like IAPT with high numbers of MUS diagnoses, cost-effectiveness etc.

It also would be an important finding if grossly exaggerated numbers were not questioned by authors and peer reviewers in top journals.

Also it seems to me that when mentioning any figures about MUS it‘s necessary to refer not only to the conceptual problems of the term but also to the fact that the validity of the numbers is questionable or at least very restricted to certain contexts—for the reasons Trish and others have given (if I understood properly).

 

[Jonathan Edwards]

I understood all that perfectly, Diane. But that wasn't my point.

The fact that the BPS camp is dealing with 'MUS' in an unscientific and harmful way is already in the literature - quite a lot of it by S4ME members! No harm in driving the point home but as a doctor I really could not work out how you manage to conflate unexplained symptoms, which people have all the time, with the problem encountered by a small group of people whose complaints are not believed. In practical clinical terms it just doesn't relate to reality.

I was pretty surprised by your suggestion that symptoms might occur as a result of emotions. I have never thought of myself of having symptoms as a result of emotions (except sweating). I get emotional when I think a spot is a melanoma and I feel it itching all the time until my dermatologist tells me the histology is normal. But that does not mean that emotions caused the symptoms. And when I really did have prostate cancer and basal cell carcinoma the symptoms went up and down with anxiety too.

I think I know what points you were trying to make but that was because they are so familiar.

 

[Diane O'Leary]

Thanks for that Michiel. Here's the paper Keith links:

Symptom management for medically unexplained symptoms in primary care: a qualitative study (2019)
It is not in itself a data collection study but it quotes the figure as 3% to 20% in primary care and gives references.

I've recently collaborated with Keith Geraghty on a chapter about MUS for the Oxford Handbook of Ethics and Psychotherapy, and there we use the 50% figure. (That chapter is still under review.)

I think there's a big misunderstanding here about what I'm saying when I say that MUS professionals generally accept a 50% prevalence figure. I am not saying that 50% of symptoms are psychosomatic! I think @Jonathan Edwards writes as if that's what I'm saying, but that is very seriously inaccurate.

What I'm saying is that half of symptoms are undiagnosed in outpatient settings. Then I say (in the article) that research typically equates undiagnosed symptoms with psychosomatic symptoms. The article is then devoted to showing how it's unscientific, and unethical, to assume that undiagnosed symptoms are psychosomatic. See?

Maybe this misunderstanding explains why people have felt such a need to dispute that figure?

 

[Lisa108]

for the good people

You certainly meant "for the good OF people", here?

If we were discussing this face-to-face, it would be much easier to clear up misunderstandings. So bear with us. You might have misunderstood things too.

It may well be that the points people here misunderstood in your paper were due to unclear phrasing.

The discussion of this figure is not about "Diane got it wrong" or "Diane got it right". It is a huge figure, with huge potential to influence health politics.

We are allies here.

 

[Diane O'Leary]

Dear @Diane O'Leary,

these are the bits I found most "controversial", to say the least. You might want to reconsider these statements, as they are partly untrue, partly (they sound) offensive and presumptuos.

You seem to take critique very personally. People here are interacting on eye-level. And there are more "professionals" on this board than you seem to be aware of. Experts from various disciplines. And they all contribute, which is great, considering the health constrictions of most.

Out of necessity members of S4ME developed an interest in re-analyzing studies.
So you can take the opportunity to discuss your work. You'll find people here are inherently interested, science-savvy, sceptical and friendly. They admit a mistake easily, when proven wrong. We are not loyal to factions, we are loyal to facts.

So, I hope you'll stay around, and adopt the style of S4ME.

Thanks so much for your collaborative efforts @Lisa108. I do not take credible critique personally, and there's been a whole lot of that about my work on s4me. I've learned so much from those discussions.

You good people are very trusting, and I think you don't know what an attack looks like in the language of professional discourse.

There is a difference between aggression and rigor.

In philosophy we have a ground rule: you don't challenge another professional's work until you first lay out an accurate summary of what it says. That doesn't happen here on s4me, so there's a lot of discussion based on misunderstanding.