David Tuller returns to discuss his efforts to expose the methodological and ethical problems with the PACE trial for ME/CFS.
Hosts: Vincent Racaniello
Guest: David Tuller
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Links for this episode
- All of David’s ME/CFS articles at virology blog
- David Tuller on Twitter
- Through the Shadowlands by Julie Rehmeyer
Intro music is by Ronald Jenkees.
Send your virology questions and comments to firstname.lastname@example.org
Thanks to David and Vincent.
David’s ME advocacy has been outstanding.
Podcasts are important for a community whose ability to read is limited by cognitive impairment.
There WAS a campaign of harassment plus a court case and conviction. Interesting to note the denial. Tribunal discussion on this was just dire. You shouldn’t depend on that when there was a conviction. See JHP. Actually, cbt fancub engaged in villificaton of several ME specialists who did not have lawyers to advice and defend them. Even in med journals. This is often overlooked. Rest is fair and consistent with my observation.
Commentaries on PACE was in the August issue of the JHP.
David is an absolute hero for his trumpet blowing. And so are you Vincent!
Meant to say whistle blowing.
If I have a problem, I want David Tuller on my side! Thank you for the update.
Culver City CA
Excellent & encouraging thank you David, & thanks also to Vincent for hosting.
David, did you see that Sir Simon is now on the Judicial Appointments Committee?
He will now be choosing who is appointed to sit the bench…. including for tribunals such as the one that ordered the release fo the PACE data.
Very disturbing iyam
To me, as a british person, this is hugely encouraging – whilst we’d all like people to hold up their hands and say ‘sorry we messed up’ that just doesn’t happen, what happens is if the establishment is put between a rock and a hard place, and something lands on enough desks, then the ‘jobs for the boys’ network and the individual with influence loses that edge where there is adequate empirical evidence that is sufficiently widely known to make it embarrassing to carry on with the wrongheaded idea. The way that’s done is very quiet, it’s as David said, things are quietly changed, according to the normal protocols (say a planned review) and the establishment can then sweep uncomfortable truths about poor decisions in the past under the carpet. The death knell won’t come until there’s something to replace the cbt/get/apt in the NICE guideline – I would speculate (and it is speculation) that the NICE board will not want to change the ME/CFS guideline to leave the ‘treatment’ section either empty, or merely concerned with symptom management and lifestyle changes. By sticking to the 2020 date, it means they can sit on the fence, they can leave the Guideline as it is now, and there’s time for the biomedical approaches currently being explored in various places internationally to come to sufficient fruition.
However that approach has a major flaw, GET can and does harm people and CBT/APT offers false hope (though the CBT of PACE has helped me personally since 2007 to cope with the illness, it’s not fixed me – so it’s still being missold so long as it’s in the treatment rather than coping section of any guidance). I’m not sure NICE have fully considered the duty of care aspects of not withdrawing the guideline between now and the 2020 date. Or maybe they have and have decided the risk is low. I personally question that as a viable approach from a risk perspective (risk to the health of patients rather than of individual medical practitioners or the NICE as a body being sued) from the point at which the twisting of the PACE data became clear after the release of the information post the tribunal decision.
I am hopeful that the biomedical research currently being undertaken will bear fruit and render the PACE trial obsolete and a cautionary tale of how NOT to deal with the data that researchers obtain and process. A retraction would be nice, but actually, as David said, what’s really needed is for the mistakes made in PACE not to be made now or in the future. Unfortunately the ‘great and the good’ refusing to acknowledge their approach as having flaws, means that it is their work that continues to be scrutinised – unfortunately in the sense of their discomfort, fortunate for the patient body so that fewer and fewer sufferers will be subject to false hope and empty promises.
apologies I forgot to say. thankyou to you David for sticking with this for so many years and bringing the issues away from the patient community into the scientific community who apply the same rigour as the patients did, but are not so easy to shout down and discredit (and I’m so pleased you are now getting paid for this work), and also to Vincent for giving David the platform.
Vincent, thank you for interviewing David Tuller in an effort to expose the multitude of flaws of the PACE Trial and share convincing arguments against the results of the Trial.
David, thank you for exposing the many flaws of the PACE Trial. You have done so much for the ME/CFS population and we are grateful. You have skills that very, very few journalists have; passion, determination, an excellent way of speaking and writing in a clear, concise and understandable manner, along with a willingness to fearlessly go up against “Goliath” to expose the PACE Trial for the farce that it is, and expose Ester Crawley, Simon Wessley and others involved in the PACE Trial for the fraudsters that they are. Thank you for that.
If you can get some ME/CFS organization to make some “#TearItUp” or “#TearItUpWithDavid Tuller” t-shirts, I would happily buy some for all of my family to wear. I hope you keep on the path to #Tear it Up for ME!
Thank you David and Vincent for continuing to highlight the scandal surrounding the psycho-social treatments and flawed research for ME.
Good point about DT catalysing activity in the UK. The ME Association have been conducting good campaigns on NICE.
Interesting point about Sonya Chowdhury (CMRC & Action for ME) going to the IACFS/ME conference in Florida last year to campaign for the doomed MEGA project led by Esther Crawley.
Thank you Vincent and David for a very interesting and educational interview.
About the excellent #TearItUp presentation at #IIMEC12, the 12th Invest in ME Conference, David said he wasn’t sure if this was always held in London. I believe it has, as the Westminster location gives easy access for UK Government Ministers or officials to this influential international conference, and more recently, to the biomedical researchers colloquium that runs over two days prior to the public conference. NIH was represented at these events in London in 2016, joined by CDC in 2017, so perhaps UK Government may follow the lead of USA in 2018.
Thank you David for this behind the scenes discussion of your work. I feel so frustrated sometimes, but it’s good to hear that progress is being made. I am also amazed that this has had anyone’s interest this long! And thank you Vincent, for hosting.
Thank you David and Vincent for such wonderful work you are doing. You keep me and my family living in hope.