By David Tuller, DrPH
Reuters reporter Kate Kelland informed me in January that my habit of routinely sending open letters to researchers and journals to expose what I consider to be bogus studies was “harassment,” according to those who perceive themselves as my victims. Whatever. I disagree that writing lots of letters about violations of core methodological and ethical principles and alerting key decision-makers to my concerns constitutes “harassment.”
To the contrary, I consider this method of watchdogging the published record and debunking nonsense to be a major function of my position as a public health academic and investigative journalist at Berkeley’s Center for Global Public Health. If members of the CBT/GET ideological brigades would prefer me to stop this practice, they should correct or retract papers that cannot withstand rigorous scrutiny. It is unattractive for them to cry “harassment” every time patients, me, or 114 experts from Columbia, Stanford, University College London, Harvard, Berkeley, Georgetown, Queen Mary University of London, Cornell, UCSF, and elsewhere point out disqualifying flaws in their research.
The strategy of accusing critics of “harassment” is past its sell date. It doesn’t work with me anyway–smells too much like panic and desperation. But the brigades have no other arguments so I assume they will continue to bleat these silly charges.
Moving on, I sent the following letter to the British Journal of General Practice. As usual, I cc’d the letter somewhat promiscuously. (In the letter, I linked to the references; I didn’t bother to do that here.)
Dear Dr Roger Jones—
My name is David Tuller. I am a senior fellow in public health and journalism at the Center for Global Public Health, part of the School of Public Health at the University of California, Berkeley. For the last four years, I have been investigating the research into the illness, or cluster of illnesses, variously known as chronic fatigue syndrome, myalgic encephalomyelitis, CFS/ME and ME/CFS. This illness is among those that have been included by some medical experts in the category often called “medically unexplained symptoms,” or MUS.
Much of my work has appeared on Virology Blog, a science site hosted by Professor Vincent Racaniello, a microbiologist at Columbia University. I have also written about this issue for The New York Times, the journal Health Affairs, and elsewhere. My investigation of ME/CFS research has been mentioned or cited in Science, Nature, The Wall Street Journal, The Guardian, and Slate, among other publications.
In 2017, the British Journal of General Practice published an editorial called “Medically unexplained symptoms: continuing challenges for primary care.” This editorial includes a major factual error about the cost of MUS to the National Health Service. Earlier this year, I brought this error to the attention of the lead author, Professor Carolyn Chew-Graham of Keele University in Staffordshire, but she has so far failed to correct it.
In the editorial, Professor Chew-Graham and her co-authors stated that the amount spent in England on care for those with MUS among the working-age population—£2.89 billion during the 2008-2009 fiscal year–was “11% of total NHS spend.” This statement is unequivocally false. In fact, according to the referenced 2010 study, Bermingham et al, during the 2008-2009 fiscal year around 10% of the NHS funds spent on the working-age population in England–not a similar percentage of the total NHS budget– went toward treating people with MUS.
Here is the relevant paragraph from that study on the costs of treating working-age patients with MUS in England:
“The aggregate incremental healthcare cost incurred by somatising patients is estimated to be approximately £3 billion…Inpatient costs were the largest component of total somatisation-specific healthcare expenditure, followed by GP consultations, prescriptions, outpatient consultations and A and E attendances. This represents approximately 10% of total NHS expenditure on these services for the working-age population in 2008–2009.”
Elsewhere, Bermingham et al refers to “our estimate that 10% of total healthcare expenditure for this age group [i.e the working-age population] is accounted for by somatising patients.” In other words, Bermingham et al did not report what Professor Chew-Graham asserted–that funds spent on care for those with MUS among the working-age population in England accounted for 11% of the total NHS budget. The NHS budget that year far exceeded £30 billion, so it should have been obvious to the authors, peer-reviewers and editors that this 11% figure was way off the mark.
(It is unclear why Professor Chew-Graham not only misrepresented the meaning of Bermingham et al but used the figure of 11% rather than 10%.)
If Professor Chew-Graham had made this erroneous claim just once, it would be possible to view it as an inadvertent misstatement. Yet in a 2017 blog post for Keele’s Research Institute for Primary Care and Health Sciences, she wrote that “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.” Professor Chew-Graham and a co-author made a similar point in a conference slide-show presentation. So it appears that Professor Chew-Graham has consistently misquoted the findings of Bermingham et al.
And she is not the only one. A 2013 article about MUS in The Psychologist, published by the British Psychological Society, cited Bermingham et al and noted that 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 similarly declared that MUS “are estimated to account for around 10% of the annual NHS budget.”
The repetition of this mistake across multiple publications and venues has potentially serious policy consequences. In England, the NHS has been promoting and expanding a program called Improving Access to Psychological Therapies, which is designed to provide cognitive behavior therapy and related interventions to those purportedly in need of mental health treatment. That group includes patients identified as experiencing MUS, which means it includes those diagnosed with what the NHS and UK physicians often refer to as CFS. Disseminating the untruth that treating patients with MUS in England accounts for 10% or 11% of the total NHS budget certainly would appear to bolster the argument that implementing a program like IAPT could be an effective and worthwhile money-saving strategy.
Readers of the British Journal of General Practice have a right to expect accurate information from such an authoritative source, not inflated declarations based on a sloppy reading of a seminal study. I am therefore requesting that the journal take immediate steps to review this matter and ensure that the editorial from Professor Chew-Graham and her colleagues presents data that conforms to–rather than distorts–the findings of earlier research. Professor Chew-Graham’s failure to take this step after having been alerted to the problem represents a perplexing abrogation of her professional obligations.
Let’s be clear: It is indefensible to claim, on the basis of Bermingham et al, that medical care for working-age individuals with MUS in England accounts for 11% of the “total NHS spend.” If Professor Chew-Graham is unwilling, for whatever reason, to acknowledge this self-evident mistake and correct it, it is incumbent on the British Journal of General Practice to do so unilaterally.
I have cc’d Professor Chew-Graham on this e-mail. In addition, I have cc’d several physicians involved in the current effort by the National Institute for Health and Care Excellence to develop new clinical guidance for ME/CFS. Because of the linkages between ME/CFS and MUS, it is important for them to be aware that some of the literature on the latter, such as Professor Chew-Graham’s editorial in your journal, cannot be trusted. Finally, I have cc’d the lead author of Bermingham et al to alert her to the fact that her work is being cited in ways that do not reflect her results.
Thank you for your quick response to these concerns.
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
10 responses to “My Letter about MUS to the British Journal of General Practice”
Arguably an even bigger problem is the assumption that patients are somatising. There is no diagnostic test for somatisation. It is impossible to know how many patients are somatising, and therefore impossibly to make any reliable statements on healthcare expenditure for this category of patients.
In practice it is just assumed that unexplained symptoms are psychological in origin, even though nobody seems to be able to convincingly explain how that would even work (in most cases at least).
I worry about the consequences of carelessly labelling so many patients as somatisers. Some possible consequences: missed and delayed diagnoses, emerging illnesses being recognized only with several decades of delay, loss of trust in the healthcare system, stressful patient physician interactions, waste of money.
It’s really good to see the MUS proponents being challenged in this way. Some nifty research has yet again come to our rescue (hopefully). Wrt the BPS crowd the devil certainly makes himself a home in their detail doesn’t he?
I also agree with Anton. It’s astonishing how the BPS cabal continue to demand ‘evidenced based medicine’ (admittedly they have a somewhat skewed version of it) when it’s impossible to prove that ‘somatising’ actually exists at all. My personal view is that it doesn’t but it’s on their shoulders to prove that it does.
Yes, Anton Mayer, it would seem that the advocates of the approach to ‘MUS’ are saying we do not have evidence that these people have a biomedical condition, so with no reliable evidence at all we will avoid medical assement of this arbitrary group (preventing the establishment of any other missed biomedical diagnoses) and assert they have an unresearched catch all psychiatric diagnosis misleadingly labelled ‘MUS’. This seems to me an entirely circular abuse of logic.
This misuse of financial information is further compounded by not explaining that most patients enter the primary care system with medically unexplained symptoms, indeed the very purpose of primary care is to respond to unexplained symptoms and if unable to explain them, to refer them on to those who are best placed to do so. Obviously one can at any point in time say what percentage have not yet received a diagnosis and assign some sort of cost. However this is totally different to providing positive evidence that a specific percentage have a somatising psychiatric condition that requires psychotherapy or behavioural interventions.
Further they include entire diagnostic categories such as ME that have clearly identified biomedical annomolies, but with poorly understood etiologies, within their MUS label. The only reason they seem to have picked these is that some researchers have, on the basis of very unreliable evidence and in total disregarded of evidenced harms, posited that they are responsive to psychotherapy land/or behaviour modifications such as CBT or GET. This is as rational as including Motor Neurone Disease or MS within their MUS dustbin.
This lack of scientific and intellectual rigour leaves one unsurprised that they arbitrarily abuse statistics on NHS budgets. As the IAPT program continues to be rolled out, who is monitoring the cost to the NHS and to society as a whole of the missed treatable diagnoses and the increased levels of disability in those patients channeled into potentially harmful treatments.
People with properly diagnosed psychiatric conditions should also be alarmed as this is seeking to highjack an already stretch budget for psychiatric services to provide unevidenced treatment that may for some be harmful to an entirely new patient group with no meaningful long term outcome evaluation.
It seems that Professor Chew-Graham is the Honorary Professor of Primary Care Mental Health at South Staffs and Shropshire Foundation Trust, co-chair of the Mental Health Research group in the Research Institute for Primary Care and Health Sciences at Keele and RCGP Curriculum Advisor for Mental Health. So did the fact that the WHOLE mental health budget has been around 10% of total NHS spend somehow pass her by? Surely with that knowledge she should have known/guessed that ‘MUS’ (whatever that is) could never account for 10% or 11% of total NHS spend.
But her error has been pointed out by David, and she’s had plenty of time to correct her paper. So why hasn’t she? Doesn’t a ‘Honorary Professor of Primary Care Mental Health’, co-chair of a Mental Health Research group, Chair of the Royal College of General Practitioners (RCGP) Scientific Foundation Board, Chair of the RCGP ‘Research Paper of the Year’ panel, RCGP ‘Curriculum Advisor, Mental Health’, Vice-chair of the Society for Academic Primary Care (SAPC), member of the NICE Clinical Guideline Development Group for Depression, editor for several journals and/or a GP Principal (I’m not sure what that means but it sounds impressive), have a duty to speedily correct their mistakes?
And is this really how a BMJ ‘role model’ should act?
It is unbelievably unscientific to continue to declare as-yet undiagnosed (ie not yet explained) symptoms to be “unexplained” (ie unexplainable) symptoms. It is another step further to assume that anything that cannot be explained is necessarily imagined or caused by psychological issues. Given the speed with which GPs and specialists rush to categorise patients with rare or difficult to diagnose diseases as “CFS” patients, even the “correct” spending figure for MUS is being inflated by not investing the time or efforts in accurate diagnoses.
The Corruption in UK and Europe have been allowed to bathe in their pseudoscience for years and they can’t quite grapple with the idea that they must have accountability. Anyone who questions their theories is automatically attacked whether it be a patient, forward thinking Dr or the voice of David Tuller.
Thank you David Tuller for staying on top of the sloppy “research” in the UK.
The USA has been connected to the false medical information regarding people who have a disease that the medical field refuses to acknowledge.
Being a well person with your skills as a medical journalist and advocate has been needed desperately in the USA .
Hoping your voice helps those in the UK like Professor Malcom Hooper, Dr. Vance Spence, Dr. Nigel Speight and the members of Parliament to keep the awareness of the disease ME/ Myalgic Encephalomyelitis. The ME Association started by the Late Dr. Ramsey ME and Polio specialist has been in trouble for over ten years, after Dr. John Richardson Died 2002, and Dr. Betty Dowsett Died 2012.
Patients have taken over and really interfered with the truth of ME and othe autoimmune diseases. E. Goudschmit never practiced any kind of medicine, neither did Shepherd. They are Patients who have helped the psychiatrists like Wessley and Sharpe and White With the PACE trials.
These Twitter entries suggest that the incorrect figure of 10% of NHS budget has been taught directly to healthcare practitioners ‘on the ground’, (in this case it would seem during a paediatrics breakfast meeting) -https://twitter.com/LindSanderson63/status/1022388208687099904 and -https://twitter.com/drbobphillips/status/1022393265654517760
It would be unfair to blame those who have been taught this rubbish. Professor Chew-Graham should now correct her paper, or have it corrected for her, as a first step to putting things right.
Harrassment? being held to account publically for publically published results? Where the results are portrayed in a manner that is misleading?
erm. Nope. Doesn’t matter how loudly it’s protested, it’s NOT harrassment to subject public statments on public health issues to scrutiny. We live in a democracy where journalistic scrutiny is both valued and immensely useful. I suspect what she really means is ‘inconvenient because it leads to tricky questions from others’ which is not the same thing at all. And also, if the person being scrutinised finds tricky questions difficult,there’s an easy way out for them – to raise their professional and ethical standards in their work so that all scrutiny comes up with – ok don’t agree with their ideas, but they follow best practice…
And anyway the IPSO UK code of practice for journalism clearly has exceptions to continuing to follow up issues where there’s a public health or public issue at stake. Section 3 is harrassment and after 16 is the Exceptions – this is the Editor’s Code of Practice. I chose the IPSO one cos that’s the country the people you are questioning are practising in. ALSO you are contacting them in their professional capacity about things they are already on record as saying or doing in their professional capacity. here – https://www.ipso.co.uk/editors-code-of-practice/#Harassment
She’s obviously not read the Tribunal on Pace that Alem Mathees made himself severely ill (amongst others) progressing to get the PACE data – and what constitutes harrassment and what doesn’t.