How badly have UK proponents of Medically Unexplained Symptoms misled the medical community?

This is a very interesting write up in the link below and worth taking time to read if able. Medical Unexplained Symptoms (MUS) proponents - Wesseley and Sharpe two of them - have 'sold' their MUS strategy to doctors, healthcare workers, policy makers and commissioners by telling them that the MUS prevalence rate in secondary care outpatient clinics is very high – around 50% of new referrals – and therefore a huge strain and drain on NHS resources. Yet one of their own studies showed this not to be true, but they got round that by reporting the findings under two papers.

One of the MUS proponents, Chris Burton, is on the NHS guideline development group for the review of the NICE guidelines for ‘CFS/ME’. The outcome is many doctors are probably not overly concerned in diagnosing MUS and are not ordering further investigations as they have have been told MUS is high. Patient care is severely compromised.

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It´s crime.

 

@NelliePledge, I understand. I hope this may help?

Untangling the MUS Web: How badly have UK proponents of ‘Medically Unexplained Symptoms’ (MUS) misled the medical community?


The person who wrote and researched this has no conflicts of interest other than their wish to ensure that all patients wrongly labelled with ‘MUS’ (as they have been too) get the biomedical care that they deserve. They have been researching aspects of both ME and MUS since 2015, particularly focusing on discrepancies and flaws in the literature.


They have raised discrepancies here which this moderator believes should have a much deeper and broader impact on the BPS coterie than other exposés have done to date. Holding the BPS / MUS architects to account for the detail exposed will require others to bring these issues to public attention. As the author observes, if any of the findings presented here can be countered by good evidence then the author is more than happy to dissect those too, and they can be filtered back to the author via the OMEGA Facebook page here.


EDIT: the author intends to remain anon, but is happy to be known as 'goodelf' #goodelf


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From the murky mire of ‘medical’ literature on ‘MUS’, one reference emerges as more rancid than the rest. This 2001 paper - https://www.sciencedirect.com/science/article/abs/pii/S0022399901002239?via=ihub - by Nimnuan, Wessely and Hotopf has been used extensively as a key piece of propaganda for the UK’s MUS management project, but there’s been little mention or scrutiny of its ‘small print’, and that’s a crying shame. The paper documents a study on ‘MUS’ at outpatient clinics at 2 London hospitals and has been repeatedly cited to persuade doctors, other health professionals and NHS commissioners that ‘MUS’ is rife in secondary care (in 52% of new outpatient referrals overall) and so a great burden on doctors as well as a considerable drain on NHS resources. However, in many or perhaps most cases, readers haven’t been told that there were significant limitations to the study, including that the required sample size wasn’t reached and that the prevalence of MUS could have been exaggerated through patients not being followed up over a longer period of time. But that’s small potatoes compared to another issue with this study.


The study also yielded another paper by the same authors that was published a year earlier - this Nimnuan et al 2000 paper- https://academic.oup.com/qjmed/article/93/1/21/1588375 , and close inspection of it, and particularly of Table 4, reveals high MUS misdiagnosis rates in most of the 7 specialities studied. By ‘high’, we’re not talking a few percent. For cardiology, the MUS misdiagnosis rate was a whopping 31.7%, for neurology it was 21.1% and for gastroenterology it was 18.2%. This is misdiagnosis on a catastrophic scale. The authors expressed the misdiagnosis rate as the number of patients initially misdiagnosed with MUS out of all those who were finally given an ‘organic’ explanation for their symptoms. That’s one way of doing it, but people might think that the misdiagnosis rate would represent the number misdiagnosed with MUS out of all those initially diagnosed with MUS, i.e. the proportion/percentage of MUS diagnoses that turned out to be wrong. From the data given it’s possible to calculate that too. Expressed that way, the rate of MUS misdiagnosis was around 40% for rheumatology, 38% for cardiology and 19% for neurology, with an overall misdiagnosis rate for all 7 specialties of more than 25%.


In many or most of the cases that the Nimnuan et al 2001 paper has been referenced for its high MUS prevalence rates, readers haven’t been told that the accompanying MUS misdiagnosis rates were dangerously high. Shouldn’t doctors tell their colleagues the whole story, not just half of it? If they don’t then aren’t they failing in their duty (as outlined by the GMC ) to act with honesty and integrity - https://www.gmc-uk.org/-/media/docu...hash=DA1263358CCA88F298785FE2BD7610EB4EE9A530 (see page 21) and to disclose important information to the medical community to protect patients and the public - https://www.gmc-uk.org/ethical-guid...res-for-the-protection-of-patients-and-others (see point 60) ?


The 'JCPMH Guidance for commissioners of services for people with MUS' - https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf – comes across as a prime example of providing such misleading information. Here the MUS prevalence rates of the Nimnuan et al study are published in Table 2 (page 7), but there is no mention of the limitations of the study nor of its high MUS misdiagnosis rates. The JCPMH is a collaboration of 17 organizations co-chaired by the Royal College of Psychiatrists (RCPsych) and the Royal College of General Practitioners (RCGP) that develops guidance for healthcare commissioners - https://www.jcpmh.info/about/ . Their guidance on MUS was published in 2017 when Wessely was still President of the RCPsych. It was jointly funded by the two royal colleges and the RCPsych agreed to fund 50% of the costs. This is clear from the minutes of a meeting of the MUS Working Group (who worked on the Guidance) where members of that group met with Wessely on 16th July 2014 at the RCGP, less than a month after Wessely had become RCPsych President. (These minutes were available to read online but appear to have been removed.) The minutes record that Wessely told group members the news about the funding and also that he would be invited to join any Expert Reference Group. It’s hard to imagine then that he didn’t bother to read the finished guidance and that he didn’t know that NHS commissioners weren’t being informed about the high misdiagnosis rates of his own study. You’d have thought that Hotopf would have taken an interest in this document and in other MUS papers and articles too and could have alerted the medical community to the high misdiagnosis rates. (NB Tok Nimnuan was just a PhD student who was supervised by Wessely - https://nanopdf.com/download/professor-2_pdf .)


Clearly, other authors can’t be accused of concealing high misdiagnosis rates and misleading the medical community if they don’t know that the issue exists. The consequence of Nimnuan et al splitting their study between papers was that people could read and cite the 2001 paper for its high MUS prevalence rates whilst being blissfully unaware of the high misdiagnosis rates of the same study. However, it looks as though some people may have known about both the limitations and the high misdiagnosis rates of the Nimnuan et al study but done little to highlight them or raise the alarm. Among them are Jon Stone, Alan Carson and Michael Sharpe who’ve cited the Nimnuan et al 2001 paper in their work but who also referenced the Nimnuan et al 2000 paper when discussing this study - https://jnnp.bmj.com/content/74/7/897 and therefore should have been well aware of the misdiagnosis rate of 21.1% for neurology displayed in its Table 4. (After all, Michael Sharpe quite stridently told someone else to ‘read the paper’ on Twitter - https://twitter.com/user/status/1010509868954980357
! ) Moreover, Sharpe worked with both Nimnuan and Wessely on a 1999 paper - https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(98)08320-2/fulltext - so you’d have thought that they might have told him about the misdiagnosis issue then. It’s indisputable though that Alan Carson knew about the high misdiagnosis rates. In his 2001 MD thesis - https://www.semanticscholar.org/pap...rson/c0dedce75b873f5f8e2744bc521823c8f52a3974 - he documented on page 179 that the Nimnuan et al study showed high misdiagnosis rates for both medically unexplained and medically explained symptoms and put this down to there being a higher proportion of lower-grade staff in this study than in other studies. Carson seems to have been working under or alongside Michael Sharpe in the University of Edinburgh’s Department of Psychiatry at the time he wrote it.


In 2005, Stone, Carson and Sharpe appear to have tried to debunk Eliot Slater’s landmark 1965 paper - https://www.bmj.com/content/1/5447/1395 - and his conclusion regarding the misdiagnosis of hysteria. With others, they conducted a systematic review of studies in neurology looking at the misdiagnosis of conversion disorder - https://www.bmj.com/content/331/7523/989 - and then claimed that it showed that misdiagnosis rates had fallen and had been at quite low levels (around 4%) since the 1970s. They judged that this was most likely due to an improvement in the quality of the more recent studies rather than to the development of better diagnostic tests such as imaging but they didn’t include or mention the 2000/2001 Nimnuan et al study with its high misdiagnosis rates (despite presumably being well acquainted with it), and the inclusion criteria that they set would have excluded it. Hmm. They also pointed out that the rates of misdiagnosis of conversion symptoms/hysteria in older studies (which appear to have ranged from about 12% to 30% - 40%) had been unacceptably high. Surely then they must also regard Nimnuan et al’s MUS misdiagnosis rates as unacceptably high, including its 19% misdiagnosis rate for neurology (when expressed in the same way). Why didn’t they mention this issue in their review if they rated the Nimnuan et al study so highly that they cited it in their other work as evidence of high MUS prevalence rates? They followed up with a paper - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1299341/ - that argued that Slater’s 1965 study (conducted by Slater and Glitheroe - https://www.sciencedirect.com/science/article/abs/pii/0022399965900048?via=ihub ) had been of poor quality.


Earlier in 2005, another Stone, Carson and Sharpe paper/article had been published - https://www.acnr.co.uk/acnr jan feb 2005.pdf - in which they’d cited Nimnuan et al 2001 as evidence for high MUS/’functional symptoms’ prevalence rates in neurology. They claimed that Slater had been wrong about misdiagnosis, and that the rate of misdiagnosing neurological patients with functional neurological disorders in more recent times had been ‘consistently’ below 10%. Don’t they know what ‘consistently' means? It seems that these authors will reference the Nimnuan et al study when it suits them to evidence high MUS/functional disorder prevalence rates in neurology but will ignore its other findings when they’re discussing and reviewing misdiagnosis rates.


Their 2005 systematic review has been used to persuade and reassure doctors that they need not be overly concerned about the risk of misdiagnosis, and not only in neurology clinics but when labelling their patients with ‘MUS’ in any specialty. It was included as a reference in the RCPsych/RCGP’s 2011 “Guidance for health professionals on medically unexplained symptoms” - [available here on registering - https://www.scie-socialcareonline.o...unexplained-symptoms-mus/r/a11G00000017xGwIAI ] - to evidence that 4% to 10% of ‘MUS’ patients have their symptoms re-diagnosed as an ‘organic’ condition. Readers weren’t told about the high misdiagnosis rates of the Nimnuan et al 2000 paper, even though the paper was cited in the same section as evidence of high MUS prevalence rates! The same low 4% to 10% MUS misdiagnosis figure was also included on page 7 of this 2018 Paediatric Mental Health Association (PMHA)/ RCPsych guidance on MUS for pediatricians and other doctors - https://paedmhassoc.files.wordpress.com/2018/12/mus-guide-with-leaflet-nov-2018.pdf but the reference given was not the original review paper but the 2011 MUS guidance (discussed above) that had cited it. Paediatricians weren’t warned about the high misdiagnosis rates found in a key MUS study and weren’t advised to proceed to more complex investigations if basic investigations were negative.


Astonishingly, it seems that Stone, Carson, Warlow and Sharpe were concerned that their systematic review of misdiagnosis rates may not have been up to the mark years before those two guidance documents on MUS were published. In 2009 they reported on a newer study of misdiagnosis rates - https://academic.oup.com/brain/article/132/10/2878/333395 , advancing their lack of full confidence in their review’s conclusion as a reason for conducting the new study. (From the 2009 paper it looks as if they may have decided that their systematic review wasn’t good enough even before the review was published!) Do they know that their shaky review has been used since as evidence to persuade doctors that MUS misdiagnosis rates are quite low? If so, then don’t they have a duty as doctors to point out its shortcomings to the medical community? Perhaps they’ve done this somewhere, but the very next article in that 2009 journal was a paper by Wessely and others - https://academic.oup.com/brain/article/132/10/2889/328088 - in which the Stone et al 2005 review is referenced as evidence that ‘organic’ explanations can be ‘effectively’ ruled out. The paper opens with Nimnuan et al 2001 again being cited as evidence for high MUS prevalence rates (supposedly making up 30–60% of neurological referrals) but there’s no mention of that study’s 19% (or 21.1%) MUS misdiagnosis rate for neurology that, going by the Stone et al 2005 review paper, would be considered unacceptably high. What excuse is there for Wessely not mentioning those accompanying high MUS misdiagnosis rates?


Last but not least are Chris Burton’s contributions in the 2013 BMJ Book (edited by Burton) entitled “ABC of medically unexplained symptoms” - https://www.wiley.com/en-gb/ABC+of+Medically+Unexplained+Symptoms-p-9781119967255 - that was written as an expert’s guide to MUS for GPs and other primary care health professionals. Predictably, he reproduced the prevalence figures from the Nimnuan et al 2001 paper in Chapter 2 but in Chapter 3 gave the MUS misdiagnosis rates in neurology as being just 2% to 3%, even lower than the Stone et al 2005 review figures of 4% to 10%. The book gives no reference for his figures but he suggested that the rate could be similarly low in other disciplines too. Shouldn’t an expert in this field have known about the Nimnuan et al 2000 paper and its high misdiagnosis rates and thought them worthy of mention?


It looks as though several or many of the so-called ‘experts’ in the field of ‘MUS’ may have been pulling a fast one on the medical community and not only short-changed doctors and healthcare commissioners but put patient care in serious jeopardy. If doctors expect half of their outpatients to have MUS then they are unlikely to be concerned about labelling 50% of them with MUS and may well be predisposed to subjectively hunt for signs of MUS in patients to protect limited healthcare resources. (There’s a similar problem in the way that gender ratios have been wrongly touted for MUS - https://spoonseeker.com/2019/03/08/mus-international-womens-day/ - so potentially prejudicing women’s care.) But if doctors knew that the accompanying misdiagnosis rates were dangerously high would they still be unconcerned? Is it really acceptable for doctors to knowingly tell their healthcare colleagues half-truths to persuade them to implement their treatment models? Perhaps the GMC would like to answer that one.


It may not have felt like it, but this has been quite a brief a summary of the issue. The Nimnuan et al 2001 paper has been cited hundreds of times and there are details, aspects and people that have been left out here. If a key point has been missed, if something’s demonstrably incorrect or if the ‘experts’ mentioned can show where or how they’ve alerted the wider medical community to the high MUS misdiagnosis rates of the Nimnuan et al study (apart from in Carson’s MD thesis), then efforts will be made to amend this post. If only all authors and journal editors would do the same.

 

Thanks a lot to whoever wrote that - lots of interesting stuff in there and it's already led to me finding other pertinent things too.

I was just looking at a few of the papers linked to while reading this, but haven't read them properly at all so am just posting some quick notes before bed.

re the general point of prevalence and misdiagnosis: I guess it could be argued that the fact that there also seemed to be lots of patients whose symptoms were rated as being likely explained, yet were later classed as MUS means that the prevalence point is still valid, even if it takes time to correctly identify those who should be classed as having MUS?

Also, the relatively high rate of inaccuracy in judgements about patients symptoms in this study might be less surprising/worrying because it was just a provisional diagnosis at their first encounter with a patient, which is presumably quite different to a diagnosis of MUS being given after suggested investigations were carried out, etc:

It seems as if this study was asking doctors to make a premature assessment of whether symptoms were MUS or not in order to investigate what influenced those judgements, and so the relatively high error rate in that assessment may not reflect what happens in clinical practice when doctors make MUS diagnoses after seeing the patient more than once, and carrying out whatever investigations they believe should be done. (I may have misunderstood something here, as I haven't had time to properly read that paper, and I'm not really happy with myself for posting without having done so).

Their newer review stated:

https://academic.oup.com/brain/article/132/10/2878/333395

Isn't that even more confident than they were in their earlier review?

I thought presenting this as them believing their earlier review was not good enough seemed a bit of a stretch of language (unless they're more critical of their work elsewhere, that I didn't see) as researchers should always want to be improving the quality of evidence underpinning their claims:

 

We need to look at the evolution of this idea and its relationship to ME and its use as a way of bypassing concerns. Does anyone know, off the top of their head, the first use of the term and by whom it was used? I feel that it was used by the mid 1990's, and feel that Sharpe was an early user. It is interesting that the Wiki entry refers to the Surawy et al paper of 1995 and that is the earliest paper quoted, but I do not recall a mention of MUS in it.

It is interesting to see in Wiki a number of papers by Kroenke quoted. I seem to recall from Osler's Web that he had a malign effect on CFS but forget the details.

 

Following, very slowly, with interest.

Thank you @anniekim , OMEGA and #goodelf

 

NB, this is posted on Opposing MEGA or O-MEGA page, not OMEGA (Oxfordshire ME group for Action). The names are easily confused.

Priscilla, OMEGA chair

 

This is what's happening here in Scotland. Is this what's being given to GP's?

I find it deeply offensive.



https://www.nes.scot.nhs.uk/media/2546310/mus_f2_1evaluation_link.pdf

 

Jon Stone has now taken the MUS out of neurology by giving it the "robust" diagnosis of functional neurological disorder.

He calls the category robust because looking at patients after 4 or so years they were still diagnosed as FND. But deciding that someone's seizures are caused by demonic possession and then doing the same examination after a few years and coming to the same conclusion is not proof that it really is possession. It is only proof of that the view of the examiner is robust.

I am sure that sort of thinking makes them sure that MUS is a valid diagnosis.

 

yes, I've posted it, and I plan to take a closer look.

 

The logic appears to be: not disproved, therefore valid.

 

"Why not so?"

 

Someone has shared on Twitter this reddit post by a young person in the UK who is still having health problems a few weeks after getting CoVid. They share the doctor wants to refer them to a MUS clinic!

Moderator note: This reddit post is being discussed here:
https://www.s4me.info/threads/possibility-of-me-or-pvfs-after-covid-19.14074/page-8#post-257979

 

Goodelf has now written two further excellent follow up blogs to the one I shared on here, again they are very well researched. As Goodelf writes in the opening of their 2nd blog, the blog posts cover: ‘how one paper documenting a study by Nimnuan, Hotopf and Wessely has been extensively used to persuade doctors, healthcare commissioners, other healthcare workers and policy makers/government that there is a high prevalence of medically unexplained symptoms (MUS) in secondary care that must be addressed, not least to save the NHS a considerable amount of money’. Goodelf explains how the authors had split the findings of their study into 2 separate papers – Nimnuan et al 2000.

2nd blog - https://opposingmega.wordpress.com/2020/05/23/a-letter-to-jeremy-hunt/

3rd blog - https://opposingmega.wordpress.com/...OuzwuKgpIJg9tlZHzmyX4zuk9GP7dv48ctteawvNHcpog