David Tuller, PhD, is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. He kindly hyperlinked to the Opposing MEGA petition in his latest article about ME/CFS research – Trial by Error, Continued: The New FITNET Trial for Kids.
Dr. Tuller is renowned for his outstanding in-depth analysis of the PACE trial, posted in full on Professor Vincent Racaniello’s Virology Blog. He wrote –
Dr. Crawley is a professor of child health at the University of Bristol. She is also currently recruiting for the MAGENTA study of graded exercise therapy for children with the illness. She is a lead player in the U.K. CFS/ME Research Collaborative, an umbrella organization that is sponsoring an ambitious Big Data effort called MEGA, now in the planning stages. While patients and advocates are desperate for the kind of top-notch biomedical and genetic research being proposed, many oppose MEGA precisely because of the involvement of Dr. Crawley and Peter White, the lead PACE investigator. (Dr. White is reportedly no longer involved in MEGA; Dr. Crawley still definitely is.)
Read the full article here – http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/
One commenter helpfully referred to one of our posts –
You may be interested to this blogpost, David. https://opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/
It ties in nicely to what you are saying.
Same group of people involved.
Extracts from another comment on the article –
Although I’m not a medic, I am an academic, and I was interested to meet Esther; when she claimed that most children and young people got better within 6 months, I asked her if she checked how well they were in the months and years after that.
She swept away my question by saying that she clearly didn’t have the funding to contact people after the end of the study. I thought this odd. My daughter felt better after 6 months, but much, much worse after 8.
I also asked Esther about the rituximab trial in Norway which I had read about in the New Scientist with real excitement. In response Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology of the investigators involved, and suggesting that this was the general view of the scientific community. How interesting to discover later, then, that very similar aspersions had been made about her own work. As an academic under increasing pressures to get funding and grow my international reputation and evidence of ‘impact’, I can understand Esther’s hard work to convince society of the effectiveness of her research through the media. I don’t, however, forgive her for her ability to suspend her morals by dismissing all evidence which suggests that she is wrong. As Karl Popper pointed out, we should all be trying as hard as we can to disprove our hypotheses, as only then can we hope to prove them.
Reply to the above comment –
That’s quite incredible (though sadly not surprising) to hear that Esther Crawley was casting such aspersions on the work of the Norwegian rituximab researchers, as they are among the most highly esteemed researchers in the world for their work on ME/CFS. With regard to UK, a rituximab trial is planned to take place in Norwich (the base for the Invest in ME Research Centre of Excellence for ME) and Dr. Fluge is visiting Norwich in January to discuss and will also give a lecture – ce-news-1611-04.shtml
There was a spike in signatures to our Opposing MEGA petition following the widespread mainstream media coverage of the forthcoming FITNET trial. We posted an update about this to the petition site at the time, and will shortly update the website with subsequent developments, but here is the petition update in case you missed it headlined – 2,000 supporters and rising as MEGA researchers in mainstream media.
By 23rd November, our Opposing MEGA counter-petition will have been open for the same number of days as the MEGA petition (which closed on the evening of 2nd November). ‘MEGA’ has 2543 signatures (less than when it closed as it is possible to unsign a petition after closing). ‘Opposing MEGA’ has exceeded that, and will remain open to sign, but it would be good to reach 3,000 by the end of the day on 23rd November.
We very much appreciate everyone taking the time and trouble to look into the very serious issues raised by the opposition to MEGA . With news that Professor Sir Simon Wessely is President-Elect of the Royal Society of Medicine, it’s vital that we all act now to reject research designed to elevate simplistic psycho-behavioural interventions to the rank of first-line medical treatments for physically disabling, serious and life-threatening organic diseases. Thank you for signing and sharing ‘Opposing MEGA’ – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
8 NOVEMBER 2016 – follow-up post by Dr. David Tuller on FITNET – http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitnet-nhs/
2 DECEMBER 2016 – Trial By Error, Continued: The Dutch Studies (Again!), and an Esther Crawley Bonus by Dr. David Tuller – http://www.virology.ws/2016/12/02/trial-by-error-continued-the-dutch-studies-again-and-an-esther-crawley-bonus/
11 December 2016 – UK Charity Invest in ME Research announce David Tuller as pre-conference dinner guest speaker at their 2017 London international conference (IIMEC12) – http://www.investinme.eu/IIMEC12-news-Pre-ConferenceDinner.shtml