By David Tuller, DrPH
Last month, the journal Occupational Medicine published an innumerate article from Professor Trudie Chalder and several colleagues at Kingâ€™s College London, called “Chronic fatigue syndrome and occupational status: a retrospective longitudinal study.” Professor Brian Hughes, a psychologist at National University of Ireland, Galway, and I alerted the journal of some disqualifying issues with the paper, including the authorsâ€™ jaw-dropping failure to accurately describe their own statistical findings. (They completely mangled the percentages related to the core findings. When I first read the paper, I reviewed the text and tables again and again to make sure I wasn’t misunderstanding how badly they’d screwed up.)
Professor Hughes and I called for the paperâ€™s retraction. The journal has forwarded our concerns to Professor Chalder, the corresponding author. We have now heard from the journal that the authors are eager to respond to the points we have raised. We were advised that this would likely occur later this month, and that the editor-in-chief will let us know whatâ€™s happening after he reviews the account submitted by the authors.
Interestingly, Occupational Medicine‘s editor-in-chief, Professor Stephen Nimmo, was a signatory to a statement from seven professional organizations regarding the new ME/CFS guidelines from the National Institute for Health and Care Excellence (NICE). The guidelines were published in October. Professor Nimmo signed the statement as president of the Faculty of Occupational Medicine. Arguing that the guidelines â€œunderstate the importance of activity and exercise in the management of ME/CFS and the connection between peopleâ€™s mental and physical health,â€ the statement asserted this about CBT and GET:
â€œAs in many chronic conditions, peopleâ€™s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as Cognitive Behavioural Therapy (CBT) as of less value in alleviating symptoms than pharmacological interventionsâ€¦
â€œGraded Exercise Therapy) as defined in the guidance is not reflective of the personalised paced exercise programmes that are currently used in the NHS [National Health Service] and termed GET. These have provided benefit to many patients and should not be discontinued. However, we recognise that the phrase GET is unhelpful and this terminology should be dropped to allow clinicians to work with their patients in a more productive way.â€
The last paragraph in particular is confusing. The NICE description of GET is derived from the description of the intervention in PACE and related studies. When did NHS clinics abandon this form of GET in favor of â€œpersonalised paced exercise programmes,â€ and what is the evidence base for this more recently adopted approach? If the NHS has indeed rejected the research base and dropped the PACE version of GET, presumably they have done so because they have determined that the intervention is not effective. That would suggest that perhaps NICE was correct to rate the evidence for GET from PACE and related studies as being of poor quality. If no one is using GET as road-tested and claimed effective in PACE and other trials, doesnâ€™t that mean the critics of PACE were right all along to highlight its defects?
In any event, I look forward to Professor Chalder’s explanation for her latest embarrassment, and I hope Professor Nimmo takes appropriate steps to address the paperâ€™s many flaws.
Australian GPs Still Promote GET
The website of the Royal Australian College of General Practitioners (RACGP) hosts a section called “Graded exercise therapy: chronic fatigue syndrome.” The section indicates that it was posted in March, 2015, with no sign that it has been since reviewed or updated. Not surprisingly, the text reads as if PACE hadnâ€™t been publicly and widely discredited; in fact, PACE is a key reference. And the section highlights the 1994 Fukuda case definition, which does not require post-exertional malaise as a symptom.
The section is part of RACGPâ€™s Handbook of Non-Drug Interventions, or HANDI. The chair of the HANDI project is Paul Glasziou, a professor of evidence-based medicine at Australia’s Bond University. Previously, he served as director of the Centre for Evidence-Based Medicine at Oxford University. According to his HANDI bio, â€œhis key interests include identifying and removing the barriers to using high quality research in everyday clinical practice.â€
Professor Glasziou has been a stalwart champion of the CBT/GET paradigm and the research that purportedly supports it. He has been involved with Cochrane as an organization as well as with its much-disputed review of exercise therapies. Unless his views have flipped, he most likely dislikes the NICE guidelines. Perhaps that explains the continuing existence of this outdated HANDI section. Since it cites PACE and the questionable Cochrane exercise review, I guess Professor Glasziou or whoever wrote this section believes those to be examples of “high quality research” whose findings should be introduced into “everyday clinical practice.”
Iâ€™ve posted below some of the verbiage from this HANDI section on GET. Thereâ€™s not much to say about it, except to note that a lot has happened in the ME/CFS world since this stuff appeared. I mean, March, 2015, is forever ago–over here, weâ€™ve had an entire Trump presidency and failed insurrection since then. Keep up, RACGP!
*“GET aims to increase the patientâ€™s ability to undertake physical activity by preventing/reversing the physical deconditioning and exercise intolerance related to prolonged (relative) inactivity.”
*“The most prominent symptom of CFS is fatigue, which results in avoidance of exercise, exercise intolerance, and reduced aerobic capacity and muscle strength (i.e. physical deconditioning)”
*“In patients with CFS, GET has been shown to reduce fatigue, prevent physical deconditioning and improve physical functioning, as well as improve sleep, cognition and mood.”
*“Activity can produce symptoms. Patients are encouraged to see symptoms as temporary and reversible, as a result of the current physical weakness, and not as signs of progressive pathology. A mild and transient increase in symptoms is explained as a normal response to an increase in physical activity.”
*“Surveys by patient groups of their members have suggested that GET may be harmful to some people with CFS. However, this finding is believed to be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience.”
*“Although exercise can worsen symptoms temporarily, a prolonged lack of exercise can also worsen CFS, therefore increased rest is not recommended and should be strongly discouraged.”