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

[Dx Revision Watch]

I’m not sure if I’ve asked this question before in relation to MUS. is there any research into delayed diagnosis of things like MS or cancer that could be used to challenge the MUS idea that physical symptoms should be pushed back on. Am I wrong in having a gut feeling that MUS approach could be contributing.

ETA I’m just wondering if there’s any scope for ME charities to try to work with other groups on the issue of what causes delays in diagnosis and try to influence them to challenge MUS

The Countess of Mar/Forward-ME were intending to follow up other organisations:

Forward-ME Minutes of March 2018 meeting:

http://www.forward-me.org.uk/28th March 2018.htm

"...Other organisations representing people with MUS should be alerted so that, if they wish, they can make representations to the WHO. The Chairman would find as many of them as possible."


But I am no longer associated with the COM and I do not know whether any approaches to non ME organisations and groups were made. I've seen nothing in the Minutes of subsequent meetings that discusses ongoing outreach to other illness groups.

Incidentally, the March 2018 Minutes had noted an intended approach to the Royal College of General Practitioners. According to the Minutes of the May 2018 meeting, a "favourable response" had been received; but no response from the RCGP has been posted on the Forward-ME site - so the content of the response from the RCGP is not available for scrutiny.

 

[Barry]

Wessely et al.

Previous studies have suggested this in individual clinics, for example, only 16% of one clinics new outpatient attendees to a US internal medicine clinic was a definite biomedical cause identified for symptoms. [Kroenke et al]

This statement is clearly very misleading nonsense. It was not a study of new outpatient attendees, it was a 3 year retrospective study of all consultations by 1000 patients. Since we have no information about whether the 62% of patients studied had any problems getting their symptoms diagnosed, nor whether other symptoms of the 38% were diagnosed. We only have information about whether a particular subset of the 38% group’s symptoms were diagnosed, nothing about whatever other symptoms they reported.

Always comes back to the same modus operandi: Implying untruths by cherry picking the truths, and skewing their contexts, that favour SW's opinion.

 

[Barry]

The title of this thread is whether the statistic is true or not. It may be entrenched, but so what? It may be useful for the ME cause, but again, so what? Some members may have ethical concerns about quoting a statistic that is known to be dodgy just because it is thought to be useful. That's the kind of attitude we are used to from the BPS activists. The papers that have demolished PACE have stuck to what is known to be true, so they can't be argued against.

Wholeheartedly agree with this. A great deal of our endeavours are in seeking the truth, wherever it falls, be it to our gain or not. In doing so we implicitly therefore seek to expose untruths and show them for what they are, irrespective of whether they might notionally be of assistance to us or not. It would be deeply hypocritical of us to utilise untruths favourable to us, whilst exposing others for utilising their own untruths; moreover untruths are invariably exposed sooner or later, and the absolute last thing we need is for that to happen to us. The greatest strength we have is that truth is on our side, so no way must we corrupt that. We have to expose untruths wherever they arise.

As a general comment to all: Note I do not use the word 'lies', which implies a particular motivation for stating untruths. Establishing such motivations from the BPS camp may one day be the focus of some enquiry or other (I really do hope), but for us it is about establishing truths and untruths, not motivations (something I as much as anyone must try hard to remember!).

 

[Barry]

OK, though I am not sure I am convinced their assurances are worth much.

Yes, the military are rigorously screened volunteers, so very unlikely representative of the general population, no matter what might have been thought.

 

[Samuel]

The only way to defeat this problem is to state clearly, every single time, what exactly you're talking about.

[hi, i'm a 4 year old child. i am in class. i am raising my hand.]

i agree.

why has a-4-year-old-can-understand-it's-wrong conflation of terms not driven perpetrators out of town?

why is this not considered failure of the entire academic industry? same with casual conflation of "placebo effect". is it literal magic? is it response bias?

 

[JemPD]

https://ejcrim.com/index.php/EJCRIM/article/download/430/564

Dysautonomia: an Explanation for the Medically Unexplained?
Senthil Chandrasekaram1, Ranga H Fernando2, Vikram Aarella1, Emily T Mudenha1, Devaka JS Fernando1
1Department of Endocrinology and Diabetes,King's Mill Hospital, Sherwood Forest Hospital NHS Foundation Trust, Sutton-in-Ashfield, UK
2University of Manchester, Manchester, UK

"Patients attending specialist clinics with medically unexplained physical symptoms (MUS) account for a high proportion of frequent clinic visits, multiple investigations and health care costs, with emotional and psychological effects[1].

MUS have been divided into four categories: 1) MUS subsequently confirmed as MUS; 2) MUS initially medically explained and subsequently confirmed as medically explained; 3) MUS initially thought to be explained but later found to be unexplained (missed unexplained); and 4) MUS initially thought to be unexplained and later found to be explained (missed explained)[1].

Dysautonomia comprises a collection of conditions which may occur in different combinations in different individuals[2] and include postural orthostatic tachycardia syndrome (POTS), inappropriate sinus tachycardia, vasovagal syncope, pure autonomic failu re, neurocardiogenic syncope, neurally mediated hypertension, orthostatic hypotension, orthostatic hypertension, autonomic instability, paroxysmal sympathetic hyperactivity and cerebral salt wasting syndrome[2].
We describe a series of patients with symptoms not fitting into organ-based specialities which were incorrectly labelled as psychological in origin, who had dysautonomia, thus falling into the missed explained category.

...Failure to recognise dysautonomia as a clinical entity delayed diagnosis and had a significant adverse impact."

Goodness me... are we actually seeing some curious doctors?!

Interesting paper, only case studies but still... they are to be commended for looking past the obvious.

One of the case studies...

The patient was labelled as having Munchausen's syndrome and memos to that effect were circulated to local hospitals.

While she may well have had Munchausens (finding abnormalities doesnt preclude that) I sure hope they had a VERY good reason - ie not a mere 'opinion' - for that label... because if not, & maybe even if they did, the memo to local hospitals, is chilling.

 

[Amw66]

Goodness me... are we actually seeing some curious doctors?!

Interesting paper, only case studies but still... they are to be commended for looking past the obvious.

One of the case studies...
While she may well have had Munchausens (finding abnormalities doesnt preclude that) I sure hope they had a VERY good reason - ie not a mere 'opinion' - for that label... because if not, & maybe even if they did, the memo to local hospitals, is chilling.

I would agree - the lack of curiousity is curious in itself.

 

[Roy S]

“Almost one half of Primary Care Patients have at least one medically unexplained symptom that does not respond to standard care. This leads to unnecessary investigation, referrals, health costs, medications as well as frustration in patients and health professionals alike. The great majority of these patients have psychophysiological disorders.” Dr. Allan Abbass, MD, FRCPC MUS Expert , Dalhousie University’s Director of Education."


This is at Bristol with several speakers not yet named.
https://www.healthcareconferencesuk.co.uk/medically-unexplained-symptoms

thread here
https://www.s4me.info/threads/confe...mary-care-response-bristol-uk-july-2019.8813/

 

[Amw66]

“Almost one half of Primary Care Patients have at least one medically unexplained symptom that does not respond to standard care. This leads to unnecessary investigation, referrals, health costs, medications as well as frustration in patients and health professionals alike. The great majority of these patients have psychophysiological disorders.” Dr. Allan Abbass, MD, FRCPC MUS Expert , Dalhousie University’s Director of Education."


This is at Bristol with several speakers not yet named.
https://www.healthcareconferencesuk.co.uk/medically-unexplained-symptoms

thread here
https://www.s4me.info/threads/confe...mary-care-response-bristol-uk-july-2019.8813/

The empire building goes on.

 

[TiredSam]

psychophysiological

Oh good, another word to keep on top of:

https://en.wikipedia.org/wiki/Psychophysiology

Some people have difficulty distinguishing a psychophysiologist from a physiological psychologist, two very different perspectives.

Yup, guilty.

 

[fossil]

Oh good, another word to keep on top of:

https://en.wikipedia.org/wiki/Psychophysiology

And there's an empire built around that word too - Howard Schubiner, thinks CFS is a Psychophysiologic Disorder (PPD.) He is a cofounder of the Psychophysiologic Disorders Association. More here;

https://www.s4me.info/threads/this-...on-pain-treated-with-mind-body-medicine.8087/

He's also written a book with Dr. Allan Abbass who is quoted above.

 

[Jonathan Edwards]

“Almost one half of Primary Care Patients have at least one medically unexplained symptom that does not respond to standard care. This leads to unnecessary investigation, referrals, health costs, medications as well as frustration in patients and health professionals alike. The great majority of these patients have psychophysiological disorders.” Dr. Allan Abbass, MD, FRCPC MUS Expert , Dalhousie University’s Director of Education."

Building an empire on fake news of this sort is going to be quite hard to sustain in the long run I think. This figure means absolutely nothing, and nor does the restive the sentence, or the rest of the paragraph for that matter.

Fortunately, this is a commercial conference in Bristol and relatively few doctors will be stupid enough to pay the fee.

I worry for Dalhousie University though.

 

[Esther12]

This quote reminded me of this thread:

A curiosity of the situation as described is a concomitant frustration felt by those who do access healthcare services. 1 In a recent study, it is estimated that as many as 40% of patients consulting their GP have persistent physical symptoms that remain undiagnosed and are not regarded as organic disease. Health professionals find it difficult to account for symptoms that do not fit standard models of illness. 2

Not sure if either of these references are for that 40% claim:

1 H. Haller, H. Cramer, R. Lauche, G. Dobos, Somatoform disorders and medically unexplained symptoms in primary care: a systematic review and meta- analysis of prevalence, Deutsch. Arztebl. Int. 112 (2015) 279– 287. 2 Morton, L., Elliott, A.,, Cleland, J., Deary, V., Burton, C. A taxonomy of explanations in a general practitioner clinic for patients with persistent “medically unexplained” physical symptoms. Patient Education and Counselling 100 (2017) 224–230

From something V Deary was a co-author of about how FND relate to Long Covid- Covid and Society: Accessing healthcare before, during and after the pandemic: https://www.thebritishacademy.ac.uk...ng-after-pandemic-SAS-London-January-2021.pdf

There's a lot on working with patients and the trouble with distrust in there, which is funny coming from Deary.

Summary of the position paper here: https://www.thebritishacademy.ac.uk...sing-healthcare-before-during-after-pandemic/

Don't know much about the British Academy but it looks like they sometimes get asked by the government to do reports.