Trial By Error: The Cost of MUS

By David Tuller, DrPH

In January, I wrote about the problematic online training course developed by the Royal College of General Practitioners and touted by Steve Brine MP as addressing the “misconceptions” about ME (or CFS/ME, as the online course calls the illness). The lead author of the course was Carolyn Chew-Graham, a professor of general practice research at Keele University in Staffordshire. Rather than addressing any “misconceptions,” the course repeats various bogus claims that the GET/CBT ideological brigades have been pushing all along.

Like the PACE authors and those in their orbit, Professor Chew-Graham is a leading proponent of psychological and rehabilitative treatments for patients identified as having “medically unexplained symptoms,” or MUS. (Journalist Maya Dusenbery and I discussed some of the problems around the MUS construct in this Q–and-A last year for BerkeleyWellness.com.) In fact, Professor Chew-Graham has represented the Royal College of General Practitioners as co-chair of a joint effort with the Royal College of Psychiatrists to develop commissioning guidelines for MUS services.

One vehicle for advancing these treatments is a program called Improving Access to Psychological Therapies, or IAPT. NHS England has been rolling out IAPT for the past decade. (Different national branches of the NHS work differently. When NHS is mentioned below, it refers to NHS England.) In recent years, the program has grown to include more people suffering from “long-term conditions” and MUS. For IAPT’s purposes, the latter category includes what the program calls CFS/ME. The most common treatments offered through IAPT include cognitive and behavioral therapies.

Those promoting IAPT and a biopsychosocial approach to MUS argue that the strategy is evidence-based. But many of the same people argue that the rehabilitative treatment paradigm for ME/CFS is evidence-based, so their judgement cannot be considered reliable. IAPT advocates further suggest that the program offers financial advantages, since people with MUS have been identified as heavy users of medical services. If these patients are indeed experiencing untreated psychological problems, then linking them to mental health interventions makes sense, potentially alleviating their suffering while reducing their overall health care usage.

The promise of this idea rests on two assumptions: First, that all or most of those with MUS suffer primarily or to a serious degree from untreated psychological problems rather than from undiagnosed organic illnesses; and second, that the proposed interventions are effective for these untreated psychological problems. Both assumptions are questionable.

The current expansion of IAPT to those with MUS has been premised in part on the potential for savings in NHS expenditures. Given the significance of this factor in the debate, it is surprising that Professor Chew-Graham has demonstrated some difficulty in accurately citing the relevant literature. On at least a few occasions—a blog post, a published paper and a slide presentation–she has conveyed apparent misinformation about the estimated costs of MUS to NHS.

Here is the core of the issue: A 2010 study (Bermingham et al; more on this study below) documented the costs of health care services for working-age people with MUS. The authors concluded that these services accounted for around 10% of NHS expenditures for all services for those of working age. This figure appears to have been translated, by Professor Chew-Graham among others, to mean something a bit different–that spending on these working-age patients with MUS accounts for 10% of total NHS expenditures, not just expenditures for those of working age.

Here is what Professor Chew-Graham wrote about the cost of MUS in a 2017 blog post on her university’s website: “MUS actually accounts for a considerably high proportion of NHS activity, with approximately 10% of total NHS expenditure being spent on services for the working age population in England with medically unexplained symptoms.”

And a 2017 paper she co-authored in the British Journal of General Practice stated that “annual NHS costs for MUS in adults of working age in England was estimated to be £2.89bn in 2008/9 (11% of total NHS spend).” Professor Chew-Graham included the same statement on a slide called “The scale of the problem,” part of a conference presentation on the development of the MUS commissioning guidance. The co-author of the presentation was Dr Simon Heyland, a psychiatrist and Professor Chew-Graham’s co-chair on the collaboration between the RCGP and RCPsych to create this commissioning guidance. (The stated change in the proportion of MUS-related costs from 10 % to 11% of NHS expenditures was not explained.)

So according to Professor Chew-Graham’s public statements, the NHS spends about a tenth of its total budget on working-age patients with MUS. A commenter on the 2017 blog post explained the problem—that the “10%” related to how much was spent on those of working-age, not how much was spent on everyone. Professor Chew-Graham has never responded. A few weeks ago, I sent Professor Chew-Graham a letter that mentioned the misleading statements in both the blog post and the journal article. I have not heard back. Neither the post nor the journal article has been clarified or corrected.

Professor Chew-Graham is a key player in the development of national health policy for people with MUS. Any sloppiness or ambiguity on her part is especially troubling, given that this kind of misinformation about such a salient issue could influence the opinions of others’ and impact their decision-making. But Professor Chew-Graham is not the only one to propagate this error. It has popped up repeatedly in academic discussions of MUS in the nine years since Bermingham et al was published.

The 4th edition of a textbook called Psychiatry in Primary Care, published by Cambridge University Press the year after Bermingham et al, mentioned the statistic. The textbook noted that “some have estimated that up to 10% of the NHS budget is taken up with medically unexplained symptoms,” although it also suggested that the estimate was probably too high. A 2013 article about MUS in The Psychologist, published by the British Psychological Society, cited Bermingham et al in noting that the cost of these conditions accounted for “approximately 10 per cent of total NHS expenditure at that time.”

The Winter 2016/2017 edition of the RCPsych’s Medical Psychotherapy Faculty newsletter included a section on MUS that stated this: “Current political interest in MUS is more about the potential for cost-savings than anything else, but the focus on this group of patients is long overdue. They are estimated to account for around 10% of the annual NHS budget, yet rarely get access to specialist care.” Even as it disseminated this untrue information, the newsletter touted the RCPsych’s role in developing a guidance for commissioning services for people with MUS.

And here is a statement about MUS-related expenditures from a paper published last November in the journal Frontiers in Psychology: “At approximately £11.64 billion it cost around 10% of the whole English National Health Service (NHS) budget in 2015/16.” The paper is called “Different Strokes for Different Folks: The BodyMind Approach as a Learning Tool for Patients With Medically Unexplained Symptoms to Self-Manage.”

Surprisingly, the paper does not cite a reference for the £11.64 billion figure, but it follows a mention of Bermingham et al. Absent other clues, what seems likely to have happened is that the authors derived the statistic themselves by calculating 10 % of the total NHS budget–based on their misunderstanding of the relevant data from Bermingham et al. This interpretation of events is consistent with the fact that the NHS budget for that fiscal year was £116.4 billion.

Helen Payne, a professor of psychotherapy at the University of Hertfordshire, co-authored the Frontiers in Psychology paper. And at an event called the “Medically Unexplained Symptoms/Somatic Symptom Disorder: National Summit 2017,” her lecture slides included one that noted this about MUS: “Extremely costly approximately £11.64 Billion, 10% NHS budget 2015/16.” Presumably none of Professor Payne’s colleagues at the MUS conference understood, or bothered to tell her, that the cost numbers were off, since she included the point in the Frontiers paper the following year.

Such misstatements by well-regarded researchers have likely helped foster an impression that providing services to people with MUS consumes a much greater percentage of NHS funds than it does. Over-estimating the budget impact of MUS in this manner would likely raise hopes or expectations that expanding a program like IAPT could result in substantial savings. That would be convenient for those with professional or financial interests in expanding IAPT.

Let’s take a look at Bermingham et al, the study that has triggered so much apparent confusion among renowned experts in this field. “The cost of somatization among the working-age population in England for the year 2008-2009” was published in a journal called Mental Health in Family Medicine. According to Google Scholar, it has been cited 120 times. (Google Scholar does not provide data on how often Bermingham et al has been mis-cited.)

The study abstract includes these two sentences: “The incremental health care cost incurred by somatising patients is estimated to be £3 billion. This represents approximately 10% of total NHS expenditure on these services for the working-age population in 2008–2009.” (In this post I’m not addressing whether the study’s methodology or calculations were sound.)

The phrasing of the second sentence could be considered a bit confusing. Taken alone, it would be possible to interpret it as did Professor Chew-Graham and some of her colleagues apparently have. But even a quick review would reveal any such interpretation to be incorrect.

First, the meaning cannot be misconstrued in that way when the £3 billion figure is considered, since 10% of total NHS expenditure would have amounted to much more than that amount. Moreover, elsewhere the study states the conclusion about the costs for working-age people with MUS more precisely, noting that “10% of total healthcare expenditure for this age group is accounted for by somatising patients.”

So Bermingham et al reported that 10% of the funds NHS spent on health care services for the working-age population went toward patients with MUS. It did not report that 10% of all NHS expenditures went towards working-age patients with MUS. The two statements are very different. The matter should not be that complicated for people used to reading medical and public health studies. Yet these researchers have repeatedly managed to get this wrong.

One conclusion to draw here is that members of the MUS/IAPT ideological brigades have misrepresented, whether intentionally or not, a major plank in support of their biopsychosocial agenda. It is unsettling that such a substantive error could percolate for years through a field of scientific inquiry—and then get cited to help justify ill-advised health policies. This untrue statistic doesn’t by itself invalidate other findings, of course. But if these folks can’t grasp such basic facts or don’t notice (or care) that their colleagues are making unwarranted claims, it would be wise to regard their other pronouncements about MUS, IAPT and anything else with a huge dose of caution.

(I want to thank the keen-eyed sleuth who uncovered this “sleight-of-budget” situation.)

{ 14 comments… add one }
  • Daisy 25 February 2019, 11:41 am

    Thanks for this David. It can’t be underestimated how important this kind of error is. Local Commissioning is very likely to review expenditure for what appears to be such a large block of the budget with a view to saving money.

    In my local area there appears to be a push for expanding IAPT (CBT) into ME/CFS services and expanding the service to include patients with “chronic fatigue” whose primary presentation is psychological. This dilution of ME/CFS services leaves those with M.E. and CFS and especially the severely affected, even less likely to receive anything approaching appropriate care.

  • Steve Hawkins 25 February 2019, 12:04 pm

    The whole, misleadingly named, concept is a massive exercise in gaslighting both patients and the health service providers into handing over money to the psych professions, for fabricated disease concepts for which they have no cures in any case.

    The tragedy is that the NHS ‘diagnostic environment’ is almost perfectly constituted so as not to be able to detect anything but the most plainly visible illness until it is much too late to effect a cure, even if the do detect it. It should not be much of a stretch of the imagination to assume that the vast majority of all symptoms go undiagnosed. Thus ‘MUS’ is a really troubling disease *of the NHS*: not the patients who are the unfortunate recipients of the attempts at brainwashing ‘cures’ for real physical disease that the current services can only diagnose correctly by sheer good luck.

  • Couch Turnip 25 February 2019, 12:06 pm

    WOW!
    What staggering incompetence, this epic fail makes these people a laughing stock. (And how we would laugh if this wasn’t so serious, if it wasn’t endangering so many lives.) Year 10 students could do a better job, but the people who have messed up so spectacularly here are doctors and professors of universities, commanding high positions and salaries and influencing policy and medical care. This truly beggars belief.

    It’s not just that they got it wrong, but that they’ve failed to correct such grave mistakes. It seems that Professor Chew-Graham has had 2 years to correct her BJGP article and blog since the commenter on her blog highlighted the problem, and David reminded her about it in an email several weeks ago. She can’t claim that she didn’t know or hasn’t had time to act. But this criticism appears to have fallen on deaf ears, she seems too arrogant to admit and correct her mistake. A Clinical Champion? I don’t think so. The Royal Colleges fail us all if their advisors, chairs and ‘champions’ won’t admit when they are wrong and correct their mistakes promptly and make amends.

    You have to feel just a bit sorry for Professor Payne though, don’t you? She likely went to all the trouble of looking up the total NHS budget for 2015/16 before multiplying it by 10% to arrive at the £11.64 billion figure for her article and conference presentation. In the process, did it escape her attention that £2.89 billion had increased to £11.64 billion over just seven years, or did she believe that MUS patients had been multiplying like tribbles (Star Trek reference)? The BPS crowd do seem to subscribe to some very strange, science-fictional beliefs.

    So how has this appalling error influenced policy? How many NHS bosses and politicians now think that MUS takes up 11% of the NHS budget? And how many GPs and secondary care doctors have taken this misleading information on board and targeted patients with unexplained symptoms to rid the NHS of this supposed huge drain on its resources?

    We need answers to these questions, and Carol Monaghan and the whole Science and Technology Committee need to know about this monumental Groupthink error.

    We also need well publicized corrections and apologies from all those at fault. Perhaps the Science Media Centre could like to do a press release for starters?

    Thank you David, you’re a star!

  • Tina Rodwell 25 February 2019, 12:07 pm

    I would like to thank that keen-eyed sleuth who uncovered this “sleight-of-budget” situation. I also thank you David and one day perhaps we can breath easy due to all the wonderful people that support each other and dig deep to find the truth.

    All this makes you tremble with sheer disbelief and although it makes for a good thriller suspense novel, it should never happen in reality when real peoples lives are at stake.

    I am truly stunned by what is being uncovered.

  • Clyde 25 February 2019, 1:31 pm

    22 years ago Narcolepsy would have been considered a Medically Unexplained Symptom. It had no biomarker, it had no diagnostic test. It took the 1998 discovery of a new neurochemical (Orexin) and some smart brains to figure out its absence due to an autoimmune event is the cause of Narcolepsy.
    For generations dream analysis and antidepressants and therapy were the dominant treatments despite their dismal success rate. Even the discovery of Dexedrine and later Modafinil changed nothing about the lack of biomarker or diagnostic test. Treating these patients with CBT is akin to treating a broken bone with CBT. Utterly stupid.
    ME/CFS has many analogues to the Narcolepsy story and the MS story (Hysterical paralysis).

    Many patients have diseases that need a good specialist to diagnose, especially those that present differently from patient to patient, often its medically unexplained because the right doctor or right test has not been done. Telling these people there is nothing medically wrong with them and they are imagining their symptoms is complete BS. Diseases like MS, Lupus, Arthritis and more have had people suffer because they were not properly tested and treated.
    The percentage of true MUS patients is likely a fraction of a percent of what these ‘learned’ professionals think. Lets not forget how long Freudian analysis was defended despite its virtually non existent cure rate.
    Here are libraries of people who would have been treated with CBT had they not found the right people to figure out what they have. Almost ALL would have been given CBT and called non compliant when they failed to improve leading to anything from reduced quality of life, pain, loss of benefits, being sanctioned against their will or even death.
    https://www.washingtonpost.com/national/health-science/medical-mysteries/
    https://www.nytimes.com/column/diagnosis

    Assuming a patient is imagining their symptoms will lead to more human misery, with the disease often advancing when in fact their conditions could have been treated at earlier stages and we would see more preventable deaths and ironically higher costs as treating conditions in earlier stages is often cheaper then when they are so severe someone figures out what it is. From cancer to MS to genetic disorders early diagnosis and treatment is usually cheaper then late stage hail Mary i wish i had not listened to these psychosomatic frauds so i now need very expensive desperate treatments.

    How many will choose euthanasia when they could have been treated successfully or their disease caught in its early stages and perhaps cured?

    How many lives ruined or lost will it take until patients turn to the courts for redress for this fraud?

  • Laura Whittington 25 February 2019, 1:35 pm

    The social and financial cost of ME to the economy is huge. Surely that ought to justify increased spending on biomedical research into treatment instead of MUS/ IAPT programs which keep healthcare away from people?

  • Lady Shambles 25 February 2019, 1:38 pm

    I too hope that Carol Monaghan reads (and acts on) this. It might even trump her assertion that PACE could be the ‘biggest medical scandal of the C21st’?

    It’s shocking that whilst people suffer and die this is allowed to continue apace in a supposedly democratic nation. Where are the checks and balances? Why has the Establishment lowered itself to such egregious group-think?

    And that’s quite apart from the elephant in the room where ‘somatizing’ in an earlier document has been interpreted as being synonymous with ‘MUS’ in more recent documents (ie: ‘all in the mind’ and ‘we docs haven’t a clue’ are the same…. how did *that* happen???). I’m guessing this could be just the tip of the iceberg vis a vis MUS-related blogs?

  • Hamilton 25 February 2019, 1:50 pm

    If an “incremental increase” means a marginal increase in cost to NHS by MUS patients the disparity is greater by many factors. It might be YUGE. (Check any microeconomics textbook, Wikipedia, etc. for meaning of marginal cost,)

    Fortunately evidence is accumulating from OMF and related research that will reveal pathophysiology of ME/CFS but the pathology of NHS re ME/CFS may never be explained.

  • Nancy Blake 25 February 2019, 2:17 pm

    I wrote this article a year or so ago…I hope the detailed background and analysis I try to provide can be helpful in our efforts to counteract this:

    http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health

  • Couch Turnip 25 February 2019, 4:41 pm

    After some searching the only figure I could find for total NHS spend in England in 2008/9 was £91.59 billion. [Labour’s Record on Health (1997-2010), Social Policy in a Cold Climate, Working paper 2, July 2013, by Polly Vizard and Polina Obolenskaya ]. If this is correct, then the % of the total NHS budget spent on MUS in 2008/9 (based on the Bermingham et al 2010 assumptions and estimate) would be 3.16%, NOT 10% or 11%.

  • Alex Young aka alex3619 25 February 2019, 6:34 pm

    This claim of 10% of NHS budget is maybe an enormous blunder, or a deliberate exaggeration for advantage, or blunder followed by some level of cognitive dissonance. It might be several of these reasons, or more, in different cases.

    Another problem with this data is nothing is cited about prevalence/costs of MUS in children and older people. It could result in more than 10% of the total, or less, or about the same. This does not however excuse the misquoting of this figure.

    Do we have public data on children and older people?

    The big elephant in the room though is data on how this is objectively improving public health and saving money. I suspect its MORE expensive to do this. Even if there were NHS savings, this has a risk that the costs are shifted to other parts of society including other branches of government.

    Maybe six or seven years ago a study in Melbourne, Australia, made a public statement, though I am not sure if a formal peer reviewed and published paper was produced. They looked at all costs for homelessness. When they provided, at study expense, accommodation, healthcare and other costs to look after homeless, total costs went down across the system. Sure, healthcare took a bigger hit, but the people were better served by it, and many often neglected costs decreased. This included costs in the criminal justice system.

    In complex issues like this any figure that looks only at the cost to one branch of government is almost guaranteed to be misleading as to total costs.

  • Couch Turnip 25 February 2019, 7:48 pm

    With respect to MUS prevalence in the elderly, take a look at –
    Hilderink, P. H. (2014). Medically unexplained symptoms in later life. Groningen: s.n.
    This document cites a study that apparently reported MUS prevalence in the over 65s to be around a third to a quarter of that in the under 65s. Perhaps doctors take more care with their elderly patients, although in the UK they are being encouraged now to look for MUS in the elderly. (see ‘Hidden in plain sight: The unmet mental health needs of older people’- Age UK, October 2016).

  • Janet Maclennan 26 February 2019, 11:08 am

    I agreed to take part in a course on “managing ME/CFS” at my local so- called ME/CFS clinic run by the NHS. How you can call an organisation that offers no medical investigation or treatment a “clinic” is beyond me, but that’s by the by. I discovered that the course was actually run by IAPT, meaning that the group sessions would be classed as “psychological treatment”, and worse, I would be classed by IAPT as having “somatisation disorder”, a classification that could have ended up on my medical records, with the potential to be used as a justification for denying me future treatment. My blood still boils. How many euphemisms for hysteria can there be? And for how long will we continue to be labelled with them?

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