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.)
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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.
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
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