By David Tuller, DrPH
I’m now at the airport in Sydney waiting for my 12:45 pm flight back home. I arrive in San Francisco at 9:30 am this morning, -gotta love that one-day time change, at least in the eastward direction! I’ve had an amazing six weeks here. I met lots of new friends, connected with others I’d only known online, made sure to have some non-ME/CFS excursions and adventures, and conducted a successful crowdfunding campaign so I can continue this project for another year. (That campaign will continue through April 30th; I met my initial $75,000 goal and am now seeking to reach $85,000, thanks to a $5,000 matching grant.)
I cried on national TV and made home visits to patients unable to attend events. I was also so pleased to be able to spend a little bit of time with one of my heroes, Alem Matthees, and his lovely mum and family. (More on that in a later post.)
I’ve visited all the states except the Northern Territory. I started off in Melbourne, and then hit Canberra, Sydney, Hobart, Adelaide, Perth, Brisbane, and the Gold Coast. I had days and half-days off everywhere; I wander around the cities, swam in the southern Pacific, and headed out into the bush. I conducted unsuccessful experiments on whether water drains from sinks and bathtubs in the opposite direction. I ate much more beef and lamb than I have in years. I’ve already posted links to some of the events in which I participated, and I have a batch of blogs still to write about the research and interviews I conducted here.
I’m really sad to be leaving, already feeling nostalgic. But it will be good to get home and catch up with my life. I hope to come back next year. For one thing, I avoided the Great Barrier Reef so I could go there with my scuba-diving partner–my goddaughter Natalie. I’d also love to hit New Zealand next time, give that patients there face some of the same problems. I hope that some progress on the issues will be apparent by then.
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After I posted yesterday’s blog about Professor Lloyd’s perplexing memory lapse relative to PACE, Tom Kindlon and I exchanged a few messages. He told me that he had written a letter to the Journal of Internal Medicine after Professor Lloyd’s inadequate mea culpa was published. That note singled out a letter by Stouten et al. and noted that it was not “unscientific” and had not included any personal attacks on the PACE authors. Then Professor Lloyd went out of his way to reaffirm the complaints against the other PACE-related letters cited by the editorial.
As I wrote yesterday, Professors Lloyd and van der Meer were wildly off-base in their harsh criticism. The letters fell well within the bounds of appropriate academic discourse and mostly raised pertinent and important scientific questions about the PACE investigators’ data shenanigans and other perplexing issues. Either the professors read the letters in question, or they did not; in any event, their comments were inexplicable and inexcusable. Professor Lloyd should have extended a profuse apology to all the letter-writers; his failure to do so was disgraceful.
Here’s what Kindlon wrote to the Journal of Internal Medicine:
In 2011, I was accused by Professors Lloyd & van der Meer of an unscientific and personal attack in a published letter of mine. The accusation was made without any explanation, and they never replied when I e-mailed them about this issue. I believe the accusation was clearly false on both counts. Now I find that Prof. Lloyd (while apologising to Stouten et al. for having wrongly claimed that their letter was an unscientific and personal attack, no less) has re-iterated the claim that this was an apt characterization for my letter, as well as letters written by others. I would like to take this opportunity to correct the record.
In the letter in question, I challenged the PACE Trial authors’ claims about the safety of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) for chronic fatigue syndrome (CFS), distilling my points into 250 words, the maximum allowed by the journal. At no point do I attack individuals. As is common in letters to the editor, I challenge points made in the original paper, it has been recognised that such correspondence can be an important part of the scientific process. I subsequently expanded on the points about that particular trial, and the reporting of harms for these interventions in general, in a peer-reviewed paper. I have had several letters published, before and since, on the subject of CBT and GET interventions in reply to different research groups in a variety of journals.
Incidentally, I do not believe the description is suitable or appropriate for the other letters that the Lancet published either.
The Journal of Internal Medicine declined to publish Kindlon’s letter. This rejection was a serious mistake and an abrogation of the journal’s responsibilities. Kindlon and the letter-writers to whom Professor Lloyd did not apologize were unfairly dissed twice, first in the initial editorial, and then in the apology. Perhaps the editorial and the apology were only reviewed by those who agreed that PACE was a fine and robust study. Who knows?
However it happened, the journal allowed these unfounded and gratuitous accusations to be levelled in the first place, and then allowed them to be repeated. It had an obligation to minimize the damage, at least as much as was possible. It clear failed this key test of editorial integrity.
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Earlier this week I also posted a blog about the University of Bath’s shopping bag study. Today the link to the study on the university’s website no longer works. The following message appears instead: We couldn’t find the content you were looking for. We’re updating our site and some information may have been moved or deleted.
I’m not sure what to make of this. Perhaps the university was overwhelmed with complaints from homebound ME/CFS patients who haven’t been able to shop in years. Perhaps those who were well enough to enroll informed the university that they had no intention of answering questions about their emotional responses to watching a video of themselves carrying a shopping bag. Or perhaps enough people enrolled in the last two days that the researchers were no longer seeking subjects, and we will be reading the results from this groundbreaking study in the near future.
It certainly seemed possible that the research was designed with the notion that patients might have dysfunctional cognitions about whether they can or cannot carry a bag loaded with whatever it was going to be loaded with. (Or perhaps the bag would be empty; that was unclear.) My assumption was that the questions about how people felt while watching the video might be structured to tease out differences between patients’ ability to carry out the activity, as documented in the video, and their perception of how easy or difficult it was to carry out the activity. But really, who knows?
Whatever. In any event, I got lots of laughs from the comments, both on the blog, Facebook and elsewhere. I’m not sure how this study could lead to any improvements in treatments, as the Bath site suggested might happen. But one commenter noted that a two-day shopping bag test could replace the two-day bicycle exercise test for identifying the core symptom of post-exertional malaise. This would be a satisfying outcome, especially given the ten-pound reward for study participation. That way, people could not only have their ME/CFS officially confirmed with reliable data but could also buy stuff and return home with toilet paper, a mop or other needed items.
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