By David Tuller, DrPH
The Guardian has published a lot of nonsense about Long COVID and has provided a platform for people who argue that robust manly thoughts are the path to recovery. Of course, it also published George Monbiot’s powerful columns on the topic, including his rebuttal of silly accusations that he was triggering more Long COVID cases by writing about it.
So it can be a mixed bag over there.
This week, on the positive side of the ledger, The Guardian published a thoughtful and well-argued opinion piece—this one from Fiona Lowenstein. a young writer and health advocate in Manhattan. Lowenstein, whose article in The New York Times last year about her own post-COVID symptoms was widely read, is a founder of Body Politic, an online community that spear-headed research into the emerging Long COVID phenomenon. (Lowenstein and I, along with Dr Mady Hornig, appeared on a TWiV webcast about the issue last fall.)
The headline of Lowenstein’s Guardian opinion conveys a core message. “I rested my way to recovery from long Covid. I urge others to do the same.” The subhead adds some pertinent public health advice: “Rest and pacing, rather than graded exercise, seem the most effective treatments to prescribe widely to long Covid patients.” The piece itself supplements those statements and addresses some of the background, including a brief account of the PACE trial–which Lowenstein refers to as a “now-discredited study.”
Seeing “now-discredited” paired like this to PACE blows me away. When Virology Blog published my 15,000-word investigation of the PACE trial in 2015, that was my goal—to discredit the PACE trial by exposing its blatant methodological and ethical lapses. Back then, one could only have dreamt of reading that phrase used in a normative manner in an article published by a major news organization.
The “now-discredited” meme about PACE has finally gone mainstream!
Valerie Eliot Smith, a barrister in London, doesn’t blog that frequently—but when she does, her posts are always worth reading for their keen legal insights, bracing observations, and (sometimes) tough advice. This week, at her site Law and Health, she’s posted a new blog, Possible responses to the new NICE guideline for “ME/CFS.” In it, she discusses what might happen after the mid-August release of the revised version of ME/CFS clinical guidance from the National Institute for Health and Care Excellence (NICE).
The publication date was previously slated for April, but NICE delayed it on the grounds of having received an overwhelming amount of comment to review after the release of the draft last December. Since then, medical journals and mainstream news media have published a stream of complaints from longstanding proponents of the biopsychosocial approach. The guidance development process has also been accompanied by the publication of some seriously flawed CBT and GET papers that appear designed to influence the deliberations.
Whatever the final version looks like, it will trigger a wave of commentary and reaction–some. cogent, some less so. Among other issues, Eliot Smith addresses possible legal challenges and media responses. Here’s a key paragraph:
“Members of the psychiatric lobby are likely to be already planning their media response to the final publication with alternative spins being prepared, in order to manage whatever the final version of the guideline actually says. At this stage, it is too late to build an entire new media strategy for the ME patient community but hopefully, something useful can be devised by the various groups and/or charities which have some resources available. Positive media coverage doesn’t just happen. Appropriate investment must be made, a strategy must be developed and good contacts cultivated. This takes time, effort and, of course, substantial financial input.”
Michiel Tack is a smart young ME/CFS patient and advocate in Belgium. Recent posts on his site, ME/CFS Skeptic, have included a series on illnesses formerly framed as psychosomatic and comments on the CDC’s evidence review for ME/CFS. (I was a co-author with him on a study published last year.)
Tack has now taken an important look at a controversial meta-analysis published last year by The BMJ: “Impact of blinding on estimated treatment effects in randomised clinical trials: meta-epidemiological study,” also called MetaBLIND. (In a meta-analysis, investigators combine the results of multiple studies to produce overall estimates of possible effects.) In their conclusion, the investigators reported that “no evidence was found for an average difference in estimated treatment effect between trials with and without blinded patients, healthcare providers, or outcome assessors.” The investigators themselves advised that blinding should continue to be a standard safeguard pending further research.
The meta-analysis has already been referenced in debates about the value of unblinded studies relying on subjective outcomes. Tack has obtained and examined some of the study data from the corresponding author of MetaBLIND, and has identified some key issues that undermine the reported results. Here is the opening of his post:
“The MetaBLIND study is likely the largest study on the effect of blinding in randomized trials to date. Contrary to expectations, the study did not find a relationship between exaggerated treatment effects and lack of blinding of patients, healthcare providers, or observers. I’ve contacted the authors to obtain the dataset of one of the most important analyses of the study, namely the impact of blinding trial participants on patient-reported outcomes. After screening the blinded and unblinded trials that were compared to each other, it became clear that the MetaBLIND study suffers from serious flaws. Some of the analyses had little relevance to medical trials, others included trials that were wrongly labeled as blinded and in most cases trials were simply too different for a meaningful comparison.”
If you’re looking for a quicker take, Tack has outlined his findings in an illuminating twitter thread.
3 responses to “Lowenstein’s Guardian Opinion; Eliot Smith’s Post-NICE View; Tack’s Take on Blinding Study”
I am grateful to Mr Tack for his always on-target analyses. Just imagine what he will accomplish when real ME treatments are developed!
A fight on many fronts, but one that is being fought by thoughtful, dignified, intelligent adults, in stark contrast to the truculent children of the opposing side. As we saw, again, in the BMJ this week, instead of engaging in proper debate about the evidence, it appears that the BPS outfit would rather mudsling -https://www.bmj.com/content/373/bmj.n1559, in what I’d suggest is their last-ditch attempt to defend their untenable position. NB I say ‘again’, because the article by Melanie Newman was published on the eve of the 10th anniversary of that ‘Great Mudslinging Event’ of June 2011 -https://www.bmj.com/bmj/section-pdf/187262?path=/bmj/342/7812/Feature.full.pdf, which I’m sure long-ME patients will never forget or forgive. I was pondering over how the ME community should mark the day, but the BMJ appears to have got in first and marked it for us all.
I agree that media management is key because the Psych Cabal have been relentless in promoting GET and Positive Thinking with the help of Gerada & Garner. Plus the press that’s included information from Sharpe.
The m.e community feel as though they are under psychological attack and just today I read a tweet of an m.e sufferer who feels suicidal, sick of the lack of support and constant disbelief of our suffering.
We need the Charities to have a strategic PR plan, it’s not as though what is being sent out from SMC is unpredictable. It’s extremely predictable and many are sick of being polite.