By David Tuller, DrPH
Two weeks ago, I exchanged e-mails with Professor Roger Jones, editor of the British Journal of General Practice. I asked him to correct a false statement in an editorial about the cost of so-called medically unexplained symptoms to the National Health Service.
In response, he invited me to send in “one or two short sentences” that the journal would consider publishing. I declined this invitation and suggested it was his and the authors’ job to fix their own mistakes. I haven’t heard back.
Although the journal published the editorial two years ago, Professor Jones rightly pointed out in his e-mail to me that the data being mis-cited were ten years old. He appeared to suggest it was therefore a waste of time to bother correcting them–although I must have been mistaken because no editor of a prominent medical journal would make such a ridiculous suggestion.
But perhaps Professor Jones has more pressing matters on his mind than dealing with dated data. As it turns out, he is a current candidate for president of the Royal College of General Practitioners.
Hey, and voting takes place this month! Here is some information about what this position entails: “The RCGP President is the ceremonial head of the College, but without executive powers, whereas our Chair…leads on strategic direction and policy at the organisation.”
I guess being RCGP president is like being the queen. Maybe you get to tilt your head and wave politely at affairs of state. I wish Professor Jones the best of luck in his electoral campaign!
In any event, I sent him the following on Sunday. I cc-d those I had previously cc-d–three members of Parliament, four doctors involved in the NICE guidance development process, the lead author of the cited paper, the lead author of the journal editorial.
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Dear Professor Jones—
I have not heard back from you about when you and/or Professor Chew-Graham intend to correct the claim that medically unexplained symptoms (MUS) among the working-age population in England account for 11% of all National Health Service expenditures. As I documented, this statement–from a 2017 editorial published in the British Journal of General Practice–is a misrepresentation of a 2010 study by Bermingham et al. That study reported that the NHS costs associated with treating working-age people in England identified as having MUS accounted for about 10% of all expenditures on that age group–a very different statistic than the one quoted by Professor Chew-Graham and her co-authors in their editorial.
As you know, I declined your invitation to send in “one or two short sentences” to be considered for publication. Publishing a letter from me would be appropriate if there were a point of dispute. There is no dispute here. The figure cited in the British Journal of General Practice is wrong. It does not conform to what was reported in the referenced article, and it needs to be corrected.
It is the responsibility of editors and authors to correct their own errors. According to its website, the British Journal of General Practice is a member of the Committee on Publication Ethics and “subscribes to the principles and guidelines” of the International Committee of Medical Journal Editors. Failure to safeguard the accuracy of the medical literature surely violates the principles and guidelines of both of these organizations. Do I really need to cite specific phrases from authoritative publishing ethics codes to make this point?
So I am asking again: When do you and/or Professor Chew-Graham plan to replace the misquotation of Bermingham et al in the 2017 editorial with an accurate description of the study’s findings? Or do you plan to leave this mistake uncorrected and ensure that future readers of the British Journal of General Practice will be misinformed about a major public health policy issue?
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
9 responses to “My Follow-Up Letter to the British Journal of General Practice”
Thanks for trying. British medicine is going through a dodgy phase where inaccuracies don’t matter. That is why we should ensure that we don’t do the same. Basically, the protocol here is that you send in a letter within four weeks of publication. That’s how it works. To be invited to send a letter so much later means they are taking you seriously. Journals do correct certain errors but not usually those published years ago. I personally wouldn’t spend too much time on MUS. I’d challenge current rubbish. And be consistent ie don’t overlook dodgy info from ‘our’ side. And provide alternatives to GET. Otherwise readers get the impression that you don’t like x an y but have no idea what you do like. Evidence-based. Feel like a granny here but been there and done that.
Wouldn’t spend too much time on MUS? Well this patient hopes you do spend a great deal of time on MUS Dr Tuller because it is the architecture which will lead to, and is leading to, the misfortune of very many patients who either already have a disease which ‘the powers that be’ would prefer to see re-directed to IAPT (such as ME, FM, IBC, IC etc and so on) or who turn up at primary or secondary care in the UK with hard-ish to diagnose symptoms (hitherto known as ‘heartsink patients) who themselves will be shunted off into the sidings of IAPT never to be taken seriously again. I get the sense David Tuller has a better handle on the real machinations in the UK wrt long term conditions, Medically Unexplained Conditions and ME than many people, thankfully!
IMO, a strange POV from Dr Goudsmit above. This IS ‘current rubbish’, and GPs and other medical professionals and researchers could still be reading this 2017 paper and believing that MUS accounts for 11% of total NHS spend. Perhaps Dr Goudsmit isn’t familiar with the 2017 JCPMH ‘Guidance for commissioners of services for people with medically unexplained symptoms’ that clearly includes patients with ME and CFS in their management strategy (of CBT and GET) within services such as IAPT? That’s Guidance to NHS commissioners, and it IS being followed now by CCGs across the UK. The aim is that 2/3rds of new IAPT patients will be from the categories of MUS and LTC (long term conditions) in order to save £billions from the NHS budget. If people don’t understand what I’m talking about then I suggest they do their own research and get up-to-date, but don’t criticize David who is, fortunately, on top of this on behalf of ME patients.
In response to Dr Goudsmit’s comment:
Tuller’s position is not weakened by not offering an alternative to GET. Separating reliable from unreliable claims is valuable.
There may be some resistance to the idea that CBT/GET do not work, because without them we’re left without any treatment and that is awful for both patients and healthcare professionals. If we want to solve difficult problem like ME/CFS then we need to have an accurate picture of it, and therefore truth is more important than emotional comfort.
If people want to believe that CBT and GET are helpful, then that’s up to them, they can support the IAPT approach and that sufferers who go to their GPs in England will be diverted into IAPT or other psychotherapies rather than being properly evaluated. If I’m not mistaken, David’s work has been about exposing the lack of evidence for the effectiveness of both CBT and GET, and that GET in particular can be harmful for a proportion of sufferers. It’s not for David to tell ME sufferers what the answer is, but he can point out when so-called scientific evidence is flawed and he can expose wrongdoings and false information that allow and perpetuate the promotion of harmful and/or ineffective treatments. He can also report on where research is going so that people can follow it and make their own minds up.
The publication of the research paper in question here coincided with the publication of the JCPMH guidance document on MUS. It was an EDITORIAL in the British Journal of General Practice and as such many or most UK GPs would likely have read it. It promoted the JCPMH guidance for which Chew-Graham and her co-author Simon Heyland were the co-leads. (NB The 10% figure WAS quoted correctly in the JCPMH Guidance, if any doctors bothered to read it, so the authors seemingly knew how it should have been written, but false statements elsewhere have still not been corrected). So now GPs up and down Britain will very likely believe that MUS accounts for 11% of the whole NHS budget and that these patients, including ME patients, must be dealt with quickly and effectively so’s not to waste precious NHS resources on them.
I’m grateful to David for pursuing this, and to my mind other sufferers should be too.
I agree with Couch Turnip that we should be grateful to David for the work he has done and continues to do in this area of medicine/ public health. I also contend that his role is one of an investigative journalist with a specific interest in Public Health and not the ‘Messiah’ for the ME community that some people, perhaps, seem to imply that he is or that he should be. I’m sure it’s useful for Dr Tuller to have input from patients and others who are also researching the strange world of ME and MUS politics and science but he is not answerable to them, rather he is answerable to the ‘truth’ and to verifiable fact, ‘like’ doesn’t come into it. And he seems to be doing a very good job of the latter. As a patient I’m immensely relieved we have someone who can publicly shine a light on the miscreancy of the BPS cabal, but that’s where it ends. Confusing his actual terms of reference with other ‘needs’ is an issue for those who suffer that delusion, not for David, though I guess he likely feels the weight of it.
Leaving us with “no” treatment is better than harming us. I don’t know where you got the idea that it wasn’t…
GET and CBT need removing now. They are like forcing an allergic person to eat peanuts.
I agree with Ev. The treatments for hysteria for women with wandering wombs were all horrific.
Stop anything like that (GET and misapplied CBT to tell you a physical illness is all in your head) NOW – and do a better job vetting the next crazy idea from the psych side. An illness they can’t understand and don’t know how to treat is THEIR problem, not the patient’s. There IS proof that their methods actually HARM people.
Whilst the cost to the NHS *of ‘MUS’ in the working aged population* has been misapplied to the whole population, it will, nevertheless, be the case that the real costs of all this misdiagnosis are going to be very much higher (assuming there is anything to be said for the method of estimation at all).
I think that, while we certainly do not want to be sidelined as ‘MUS’, much less do we want to be double sidelined by the cost of misdiagnosis in the young and the past retirement age population never having even been estimated!
The assumption behind the estimate seems to be that only the ‘workers’ count, and there is not even any point in even ‘IAPT’ being offered to people who ‘don’t work’. This is a sinister development: it’s bad enough to lose one’s working life fighting to get illness recognised: to then find you drop right off the NHS ‘radar’ once you ‘retire’, is appalling negligence–though it probably is the de facto case already.
However: there may be an opportunity for presenting alternatives to the ‘MUS/IAPT’ paradigm, in that The Lancet has just announced a ‘commission’ on improving the model of diagnostic services to bring it into the 21st Century. From its introductory piece, the commission seems to be aimed at the underdeveloped world–where the modern diagnostic equipment could reduce overprescribing of antibiotics, for example–but there is every reason for those groups most likely to be swept under the carpet by the MUS brush, to ask to take part in this commission and suggest ways to create the multidisciplinary, one stop, Diagnostic Services hospital departments we need as the starting point to solving the whole problem of ‘MUS’, and even M.E itself.
From The Lancet:
“The historical incremental approach to building diagnostic capacity has been largely fragmented, under-resourced, and ineffective. The Commission will, therefore, identify ways to achieve the transformational changes needed, building a framework in the context of UHC, WHO’s EDL, and innovations in technology, financing, and governance. Themes of the Commission *will include macro health systems approach; patient-level health systems approach; workforce, education, and training; the economic case for diagnostics; and exploration of blue-sky technologies and practice-changing innovations.*
We plan to address these topics through *five working groups* that will evaluate these themes within the context of a comprehensive description of the existing situation; identification of accessible and affordable solutions based on *integrated, tiered diagnostic networks*; exploration of methods for delivering solutions at scale; identification of necessary conditions for sustainability of services; and development of implementable advocacy ideas to influence future health care.
Although technology will be part of the solution, it is only effective when used within functioning health systems; we can no longer afford uncritical techno-optimism., A systems approach will therefore be essential to achieving the transformative change needed.
The Commission Chair is Kenneth Fleming, with Susan Horton and Michael Wilson as Deputy Chairs. The other four members of the Executive Steering Committee are Rifat Atun, Kristen DeStigter, John Flanigan, and Shahin Sayed. “
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)31052-9/fulltext
‘Integrated, tiered, diagnostic networks’, and ‘five working groups’
looks like a great opening possibility for an enthusiastic diagnostics representative from the M.E. community. If there isn’t at least some input from our sector, you can bet your life that the ‘SMC/CBT/MUS’ cabal will be lobbying this new commission to make sure no more money or resources are wasted on us.
I only wish I was well enough and qualified enough to push for a place myself, but surely we have someone suitably qualified and fit, who could take this campaigning opportunity on our behalf?