By David Tuller, DrPH
Update: Not long after I posted this, I sent the following short follow-up note to Dr Jones and the others I’d cc-d:
Dear Dr Jones–
In re-reading my response to you, I noticed that I made an error in the third paragraph when I referred to the “Improving Access for Psychological Therapies” program. The proper name, of course, is “Improving Access to Psychological Therapies.” I apologize for the error. Although I doubt most people would have noticed this mistake, I felt I should be scrupulous in acknowledging and correcting it–especially since I am asking the British Journal of General Practice and Professor Chew-Graham to do the same.
Best–David
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As I have reported, I recently sent a letter to the editor of the British Journal of General Practice. To my surprise, when I woke up this morning I had an e-mail from him. Below is that e-mail, followed by my response.
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Dear Dr Tuller
If you are certain that a correction would be of any value – the data are a decade old now – please let me have one or two short sentences that you would like us to publish, for consideration.
Regards
Roger Jones
Professor Roger Jones MA DM FRCP FRCGP FMedSci
Editor, British Journal of General Practice
Emeritus Professor of General Practice, King’s College, London
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Dear Dr Jones–
Thank you for your quick response and for what I interpret as confirmation that my concerns about misinformation in the 2017 editorial by Professor Chew-Graham and co-authors are justified.
I am frankly surprised you would imply that a correction might not be warranted based on the age of the misquoted data. The British Journal of General Practice, which clinicians rely on for accurate information, published a self-evidently false statement that should have triggered questions from peer-reviewers and editors. While the data cited are ten years old, as you note, the editorial was published in 2017 and has the potential to impact health policy in the present–especially because Professor Chew-Graham and some of her colleagues in this field have repeated this flagrantly untrue claim in multiple publications and venues.
In the process, the fake meme that MUS accounts for around a tenth of the entire National Health Service budget has been transformed it into some sort of conventional wisdom. Most disturbingly, this “fact” has been consistently cited by those promoting the purported need to expand the National Health Service program called Improving Access for Psychological Therapies.
I presume you would agree that it is generally not optimal to base important public policy decisions on dramatically inflated cost estimates–especially public policy decisions involving access to health. So why would the British Journal of General Practice consider not ensuring accuracy in the published literature by correcting a false statement that it has disseminated, especially given the magnitude of the error and its implications for current public health policy? I find it a touch alarming that someone in your position of authority appears to be advancing the notion that corrections might not be warranted if data are ten years old. Can I therefore assume that the British Journal of General Practice observes a statute of limitations on errors related to the age of cited data and/or believes that old but inaccurate data is best left as is, even if recently cited?
As you know, the normal procedure for corrections would be for the journal, Professor Chew-Graham, and her co-authors to agree on a transparent and accurate statement that includes an explanation for how this error occurred and an apology for having made it. Have you consulted with Professor Chew-Graham on this matter? Although I cc-d her on the letter I sent to you, she has not responded to me. I have no idea if she and her co-authors even acknowledge their mistake. To be clear, I am not seeking to engage in published correspondence with Professor Chew-Graham, which is my interpretation of what you are suggesting in asking me to write one or two short sentences “for consideration.” I have no need to have a letter be “considered for” publication in the British Journal of General Practice. I am not interested in participating in a process in which I write a letter, the journal publishes it, and the authors respond while the paper itself remains uncorrected.
Therefore, I want you–and the authors, if they concur–to remove the false information and replace it with the actual figures from the cited study. As I noted, if the authors don’t concur, you must do this yourself. I also want the fact that this correction was made to be prominently highlighted, so anyone reading the editorial knows what was changed and when. You’re the editor of the British Journal of General Practice. I’m asking you to do your job. Clean up the mess your journal created when it published a false statement with potentially major public health policy implications.
What should the correction say?
First, the correction should obviously acknowledge that the published statement is false–that the amount spent on health care for members of the working-age population in England believed to have MUS, identified as £2.89 billion, did not represent around 11% of “total NHS spend.” Then it should provide the proper characterization of the salient data from Bermingham et al.
Second, the correction should provide some explanation for how this misreading of Bermingham et al occurred and why it was not noticed by anyone involved in the peer-review and publication process. The NHS budget in 2008/2009 was in the £100 billion range rather than the £30 billion range, so the discrepancy would have been discovered had anyone bothered to check.
Third, the correction should include an explanation for why Professor Chew-Graham did not respond to this issue when I wrote her in January and informed her that I planned to seek a correction from the journal. Her failure to take action at that point certainly raises some troubling questions.
Fourth, the correction should include an apology for this misstatement of the reported economic impact of so-called MUS, given the potential public health policy implications.
Since your journal has actively propagated false but possibly impactful public health information, I would also urge you to invite a guest editorial–from me and/or others–exploring how and why Professor Chew-Graham and others regarded as leaders in this domain of medicine have been so consistently wrong in their readings of Bermingham et al. These eminent physicians and researchers apparently have a hard time interpreting financial data from a seminal study about an issue–MUS–on which they claim to have special expertise. Given this demonstrated incompetence in the domain of scientific literacy, these “experts” need to provide convincing reasons for why, going forward, anyone should trust or pay attention to their perspectives on major health policy issues–such as the declared importance of expanding the Improving Access to Psychological Therapies program.
Because Professor Chew-Graham and her colleagues have routinely disseminated misinformation while promoting their preferred policy prescriptions, I believe this matter needs to be addressed as publicly as possible to ensure accountability. As with my initial letter to you, I am therefore cc-ing my response to the physicians involved with the development of the new guidance for ME/CFS at the National Institute for Health and Care Excellence, along with the primary author of Bermingham et al. These individuals do not seem to have been cc-d on your e-mail to me.
I am adding in three member of Parliament who have been especially concerned about the low quality of the research in the domain of ME/CFS; I am also cc-ing a couple of parliamentary aides. Given the claimed linkages between MUS and ME/CFS by those promoting the Improving Access to Psychological Therapies program, it is important that key policy-makers understand how proponents have made distorted economic claims in the British Journal of General Practice as well as many other venues.
Thanks again for your prompt response. I look forward to further details about how you, Professor Chew-Graham and her co-authors plan to quickly correct the false statement about MUS costs in the 2017 editorial in British Journal of General Practice.
Best–David
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Comments
13 responses to “My Exchange with the British Journal of General Practice”
It’s OK for them to question the relevance of what was published 10 yrs ago but it’s not OK to reach out and help those who have been sick for much longer than that.
somewhat disingenuous of him. 10 year old data maybe, but published in 2017? then the key date is 2017…. which is not yet ancient history. And if it is, then why bother publishing in 2017. sigh.
a laconic answer that has come back to bite him on the bum.
Indeed, policy-makers need to realize they’re being given false information. In ME/CFS, this occurs consistently, and the impression is that it is deliberate.
It’s troubling how seemingly common it is within the medical profession to take no responsibility whatsoever for their work beyond self-interest. It’s not widespread but where it exists it goes entirely unchallenged, in proportion to influence. Rather than having more accountability at the top, there is barely any. Medicine is clearly much more political than it thinks it is.
It looks a lot like the field has operated for so long on an unsupervised pedestal, immune from criticism, that the leaders in the field are unprepared for accountability from outside. These decisions have a huge impact on millions of lives and yet the mere act of correcting an obvious mistake requires an outsized effort and is met with stonewalling and denial.
It’s past time for the development of patients rights, of applying the same principles of due process, record of grievances, appeals and transparency in judgment that judicial systems had to develop. Medicine is clearly poorly self-regulated. Which explains a whole lot.
Is this for real? The data’s 10 years old so it’s not worth bothering about? Has Jones even bothered to read the context?
And why didn’t he or his peer reviewers reject the paper for using old, irrelevant references then?
Unbelievable.
Unbelievable response from the editor, staggering, but then why am I surprised, this is just about the standard I’ve learnt to expect from UK journals/academics.
Excellent reply, glad to see so who is being cc’d.
Has anyone even checked where the £2.89 ‘billion’ figure came from?
Also: How did they estimate the proportion of ‘MUS’ that was real ‘somatisation’ and thus, arrive at an idea of the likelihood of reducing the NHS bill by making CBT available more widely?
It seems very unlikely that even ~3% of total NHS budget is being wasted on failing to address somatisation, and that the costs–in half a lifetime of ‘benefit’ payments, for example–of many thousands of non-somatisers who will not benefit from any amount of psychological small-talk, being left to rot, is likely to be very much greater, and much more desperately in need of being seriously addressed.
Steve, those are all really good questions that deserve exploration. I was not making any statement at all on the paper’s methodology. I thought it was important to focus just on the fact that they can’t even quote the data correctly. The category called MUS is of course inherently suspect.
Good work david very good to c ur continuing the battle for exposure of misinformation re ME
The greatest proportion of those included in the Bermingham et al study were ‘subclinical’ somatizers. Exclude those (leaving patients with full somatization disorder, though with dubious/controversial definition) and the figure comes in at £834 million, less than 1% of the total NHS budget at the time.
Keep it up – they need to clean up their act, and they are used to not doing so.
It is so discouraging for ill people to see these falsehoods promulgated by those who are in charge and should know better, while effective research languishes.
Following a neck trauma injury the NHS and UK state has I estimate spend hundreds of thousands of pounds on me since 2000 thanks to a failure to acknowledge the physical causes of my problems, that I only found out from 2017 onwards after making records requests. This involved revolving door CBT that did nothing but make the problems ten times worse – within 4 months of commencing CBT I went from having mild anxiety to severe, losing my job, because the CBT is very anxiety provoking and did not address the physical causes of my tachycardia and blood pressure issues which were fobbed off as anxiety without investigation. The CBT brigade always blamed me for the side effects of the CBT and its failures, never the traumatising therapy. CBT is a holy cow that like MUS, nobody is allowed to criticise. I had an MUS study entered into my medical records in 2010 without my knowledge after moving house and registering with a new GP, though I was aware that from this point onwards I was pretty much denied access to healthcare except psychological therapies, for which there appeared to be a neverending pot of funding. When one considers the cost to the NHS of the correct treatment – ensuring I avoid drugs that lengthen the QT interval, hypotensives, iron, and ensuring my calcium and vitamin D levels remain borderline normal (my main problem is intolerance and deficiency of these due to assumed autosomal dominant hypoparathyroidism or its autoimmune equivalent that no doctor in the NHS appears to even have heard of let alone know how to diagnose – this is the situation in the UK for most rare illnesses it appears), support tights and water – you’re talking peanuts compared to the thousands spent bolstering the MUS narrative. Unfortunately I am now permanantly injured and housebound from a graded exercise course I was sent on because of a failure to take me off the offending supplements or take my drug intolerances seriously (the policy where I live seems to be to treat all intolerances to anything prescribed as somatisation – it protects doctors from prescribing error complaints). I also found out in records requests a long history whereby multiple doctors since my accident failed to report abnormal test results, misreported them, logged tests that never took place and even altered the dates of tests by years. Histories I provided were routinely rewritten, altering timelines and removing anything that indicated physical cause. The bottom line is that the MUS/somatisation cause to illness that all UK doctors are now expected to make the focus of investigation it appears, involves laying aside facts, because facts are not allowed to challenge this dogma. It is a false belief that this saves money because in probably the majority of cases addressing cause is cheaper. MUS appears to moreover be about protecting insurance companies from having to pay out for injuries, protecting doctors who use the MUS to get out up complaints or mistakes; protecting drugs companies regarding side effects; protecting the training system whereby doctors are taught to treat symptoms not causes (benefits drugs companies, not the patient); protecting the current specialisation system that leads to endless misreferrals (I had endocrine problems investigated three times by neurologists instead of endocrinologists). A neurologist will invariably cite MUS rather than seek advice from another discipline like endocrinology, vascular or cardiology because they don’t like admitting they don’t know something, don’t work with other disciplines and know NHS commissioners won’t want to fund other referrals. All a doctor has to do is put MUS/somatisation on your records and any doctor seeing it knows they are not allowed to do anything to challenge it, which invariably will lead to patient deterioration and more spending in the long term. The real solution to saving money is to take the trouble to take an accurate timeline history which usually indicates cause and the correct pathway and so avoids carrying out the wrong tests and referrals that the NHS historically has wasted so much money on. Add to that GPs need to receive better diagnostic training skills. Sadly the ability to focus on and take a factual history is as rare as gold dust in a system that tells time poor doctors to make seeking psychological cause its main focus of assessment.
These are surface manifestations of a much more deeply embedded programme of attack on the whole concept of sickness and disability, as a way of justifying the privatisation/dismantling of government provision: the NHS, the DWP.
https://politicsandinsights.org/2016/11/29/rogue-company-unum-had-a-profiteering-hand-in-the-governments-work-health-and-disability-green-paper/
My article on how the MUS concept was stealthily inserted into the Five Year Forward programme of funding for mental health, and the failure of MUS to have any coherent conceptual model, and the lack of evidence for the success of the biopsychosocial treatment models as applied in current ME/CFS clinics, and even in the PACE Trial itself..no one returned to work…is here:
http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health
My article on the nature of the current review of NICE Guideline CG53 is here:
http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53
These all give context to the magnitude (and methods!) of institutional corruption which David Tuller is up against.
His meticulous care for the facts, and determination in calling to account those involved in supporting mistreatment of people with ME/CFS continues to inspire admiration and gratitude…thank you so much, David!