By David Tuller, DrPH
Last month, the journal Occupational Medicine published an innumerate article from Professor Trudie Chalder and several colleagues at King’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 authors’ 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 paper’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 what’s happening after he reviews the account submitted by the authors.
Ok, then.
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 “understate the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health,” the statement asserted this about CBT and GET:
“As in many chronic conditions, people’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 interventions…
“Graded 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.”
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 “personalised paced exercise programmes,” 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, doesn’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 paper’s many flaws.
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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 hadn’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 RACGP’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, “his key interests include identifying and removing the barriers to using high quality research in everyday clinical practice.”
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.”
I’ve posted below some of the verbiage from this HANDI section on GET. There’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, we’ve had an entire Trump presidency and failed insurrection since then. Keep up, RACGP!
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*“GET aims to increase the patient’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.”
Comments
9 responses to “Awaiting Response on Chalder Paper; Australian GPs Still Promoting GET and Citing PACE”
The RACGP has zero interest in acquainting itself with biomedical ME/CFS research, let alone educating GPs about it. Much easier to tout the old, discredited exercise & counselling model I wonder if they even know about NICE’s updated guidelines? Would love you to write to them about this.
Thank you for highlighting the RACP’s attachment to remaining dinosaurs in the face of evidence. Glasziou and president Karen Price need to at least be held to account.
Noone seems to bother with them any more.
I wonder how Chalder and her co-authors will try to explain this one away.
Will the day ever come when people are viewed solely on the QUALITY (not quantity or impact*) and PURPOSE of the work they do rather than on their standing and connections? *Anyone can churn out loads of rubbish and a person’s ability to have an impact has much to do with how well connected they are to powerful people.
And so it’s that time of the year again when here in the UK our Queen supposedly rewards her most deserving subjects. I feel quite sad for those who truly deserve their honour since the awards have arguably been considerably tainted by some really bad apples who didn’t deserve theirs. I suspect it’s only a matter of time before more rotten pomes are uncovered so it might just be easier, and kinder to those who have worked hard and done good, to call an end to the whole thing now. But if Her Majesty, the UK Government or whoever, can’t or won’t contemplate such a change, then perhaps those responsible for the selection should zero in on quality of work and purpose whilst simultaneously disregarding the nominee’s standing, connections, wealth and fame?
(Hats off to those, like Lynn Faulds Wood, who turned their honour down.)
How is that experienced researchers keep messing up their own data? Are they making mistakes or misleading?
As for NHS using a different form of GET, it’s still graded activity which is no longer allowed under the new NICE Guidelines. Are they saying they prescribed something not in the old guidelines? That could leave them open to litigation too!
Whenever I think of Wessely’s knighthood, I remind myself that he shares this status with Jimmy Savile, the famous TV personality who was also one of the UK’s worst pedos.
That said, @LB, I think at this point in the debacle the BPS crowd is providing the scientific both: mistakes from incompetence and intentional misleading.
**scientific community** with both…
I have had 2 bouts of ME/CFS. In between, I had an 80% block in a major coronary artery. The stenosis left me even more fatigued than with ME/CFS. I could hardly get upstairs! A few months after, I went for an excercise ECG. The machine went faster and faster and the belt got steeper and steeper. After a while, I said “Is that enough?”. The nurse said ” we have never seen a person of your age (76), so fit”. I had been to the gym several times a week. I could never have excercised like that when I had ME/CFS. even though I would have loved to.
I have had 2 bouts of ME/CFS. In between I had an 80% block in a major coronary artery, In all 3 cases, I had fatigue but not so extreme as that experienced with the block in the coronary artery. I went for an excercise ECG a few months after a by-pass operation. I found myself going faster and faster while the belt got steeper and steeper. After a while, I said “Is that enough?”. The nurse said “We were fascinated. We have never seen anyone of your age so fit”. I was 76, and had been to the gym several times a week. I could never have done this while I had ME/CFS!
“When did NHS clinics abandon this form of GET in favor of “personalised paced exercise programmes,?” ”
1. I looked up the paper that Chalder was part of that was in the Journal of rehab and disability (thought it came out in Sept but it looks like it was JUly 2021). It was going back over 15yrs of GET from a London specialist clinic – up to 2017 (interesting choice of date). Her methodology included a link to the PACE manual – which when I clicked on it was broken though went to a RHUL page as if it had been taken down. Given you don’t put a link in a paper to a dead page, then this must have come down between July-Oct 2021.
2. The description of the ‘technique’ used (up to 2017) seemed to be PACE manual but with ‘greater gaps’ between sessions. Indeed they took the liberty of displaying their data for this study ‘by No of sessions’ rather than ‘No of weeks’ because of this. Is this what they meant by ‘personalised programme’? Because it is very different to patient-led or symptom-led or better illness-led. And if Chalder is still going round telling patients to expect to feel awful but that’s OK cos it makes them better then it definitely isn’t respecting or looking for ‘limits’.
It’s a cliche isn’t it to add the word personalised to the generic print-out you are going to get everyone to do the exact same thing from. If it really were personalised then they wouldn’t be able to measure or make claims because it would be patient-led to concentrate on their priorities such as Workwell recommends e.g. ‘sitting up’ etc.
3. Sadly I think that the individuals involved have demonstrated their inability enough to understand the impact of what they have done and own it. Deliberately ignoring facts on PEM and aerobic thresholds isn’t what professionals do. Even if it is in order that you don’t need to adapt what you do as your job. It was always dangerous assuming such individuals would be safe to offer the remedies to the damage done by their own treatments – sending someone back to the person they were harmed by is something any psychology-related area would say is psychologically inappropriate, but also that person is highly unable to even do that job due to a culture which breeds into them not acknowledging wrong-doing due to litigation so they literally cannot do it. Even less likely without oversight. So the guideline should on this basis have been clear and said let’s completely cut all of this and ensure noone who has had anything to do with it and specialises in that area is anywhere near patients. For clarity’s sake. The denial can’t be doing these professionals much good to allow them to keep maintaining their own manufactured reality. Some might have skills that can be redeployed usefully elsewhere.