By David Tuller, DrPH
So itâ€™s time again to review my work and figure out what Iâ€™ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, so I will need to decide soon if I am going to crowdfund again this spring and continue this project for another year.
I posted 42 times from July 1st through December 31st. A third of these posts–14, if I counted correctly–involved the terrible pediatric studies coming out of the University of Bristol. The lead investigator of the Bristol group, of course, is the former vice chair of the CFS/ME Research Collaborative. Many members of the CMRC now appear to have recognized that the Bristol work is sub-par and does not warrant much consideration.
Many of these 14 posts concerned either the Lightning Process study or the school absence study, both of which are rife with methodological and ethical missteps and need to be retracted. I also reported how Bristol was advertising its FITNET-NHS trial by essentially promising that two-thirds of those who got the treatment would recoverâ€”a great way to bias the results. And I exposed how the Bristol team decided to cite the same research ethics committee letter to exempt at least 11 studies from ethical reviewâ€”some of them clearly under false pretenses. Five of those studies were published in BMJ journals, yet BMJ has stonewalled rather than taking any corrective action.
Many of these posts were open letters to people who should know better. The most frequent recipient was Dr Fiona Godlee, the editorial director of BMJ, to whom I sent four of these missives. So far, for reasons I fail to understand, Dr Godlee has been either unwilling or unable to fulfill her obvious professional responsibilities in this matter. Rather, her journals seem to be doing everything they can to avoid cleaning up their messesâ€”including accusing me of misreporting the facts. One of my open letters to Dr Godlee was a request for an apology from BMJ for this false claim from the journal BMJ Open, which published the school absence study.
Other topics also warranted multiple posts. These included the Cochrane situation, the Mayo Clinicâ€™s continued reliance on stupid and unscientific recommendations, and the disturbing invitation to Professor Per Fink to speak at a conference on psychosomatic medicine at Columbia. The Cochrane posts included a statement in support of the decision to temporarily withdraw the deeply flawed exercise review. That letter was signed by more than 40 scientists and experts from many leading academic centers.
In addition, Virology Blogâ€™s new open letter to The Lancet garnered even more signatures– from 114 experts, ten members of Parliament, and several dozen patient and advocacy organizations from around the world. I posted this letter first in June, and then reposted it twice moreâ€”in July and Augustâ€”with more signers for each iteration. The August version received news coverage in The Times (UK), followed the next day by a story on BMJâ€™s site.
In response, the head of the UK Medical Research Council, Dr Fiona Watt, issued a laughable statement in defense of PACE. Not surprisingly, she cited the Cochrane reviews to back her claim. Of course, Cochrane subsequently made clear that it believes the exercise review needs to be withdrawn and revisedâ€”even though it has not yet managed to make this happen. So Dr Watt really needs to come up with a better defense of PACE if she hopes to keep justifying her agencyâ€™s seriously flawed perspective.
I wrote only one blog on the situation with NICE and one on the UKâ€™s problematic Improving Access to Psychological Therapies program. I had intended to devote more time to both these issues during this time period but did not manage to do so; other events kept intervening. I hope to do better on these topics in the next six months, given their importance.
In non-Virology Blog efforts, I co-wrote a piece about disability insurance issues for STAT, the well-regarded health reporting site, with my friend and colleague Steve Lubet, a law professor at Northwestern University. And for BerkeleyWellness.com I conducted a Q-and-A with journalist Maya Dusenbury about her book on medical discrimination against women–Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. The Dusenbery interview included some discussion of a key issueâ€”so-called â€œmedically unexplained symptoms.â€
I continued my traveling and public outreach efforts. I spent time in the Netherlands and the UK in September and October, and five days in Norway in November. I was interviewed at length in both Amsterdam and Oslo. During my time in England, I attended the annual gathering of the CFS/ME Research Collaborative for the first time, pleased to note that it seemed to me to be a BPS-free zone this year. Although I wasnâ€™t officially on the schedule, I was asked to say something at the end of the first dayâ€”so I gave a little rant along predictable lines.
In Newry, Northern Ireland, I was delighted to share the podium with Professor Brian Hughes, a psychologist at National University of Ireland Galway. My presentation wasnâ€™t that different from usual, but I did happen to compare the peer-reviewing and self-congratulatory behavior of the PACE authors and their colleagues to a â€œcircle jerkâ€â€”an American summer-camp expression that speaks for itself. (The only problem is that itâ€™s a guy term, so Iâ€™m not sure it would be understood to include the many women among the GET/CBT ideological brigades.)
I also gave two talks in Sheffield, England, two in Norway and one in Boston. I think I might need to vary my act soon! Everyoneâ€™s heard it already. It might be time to develop a new talk focused on non-PACE aspects of the situation, although ripping up PACE provides me with great pleasureâ€”even when the shredding is just metaphorical.
As always, I didn’t get to lots of things I hoped to cover. I always feel like Iâ€™m way, way behind. I still have a couple of interviews from Australia I haven’t written up, plus interviews with two patients from the Royal Free outbreak. When I started this project, there was much less news! With so much going on now in so many different countries, it seems to be more and more difficult for me to keep up with it all–much less comment on everything.
Happy to make a donation again to support your continued advocacy. It seems like we are so close now.
helen oliver says
More than happy to fund your excellent work David. Would love to see you in Scotland.
Cathrine Eide Westerby says
Thank you so much for your excellent work! We are so extremely grateful to have your support and your clear voice in these matters. It was especially exciting for us that you came to Norway this year, thank you! I truly hope you decide to continue, and will of course support your fundraising. All the best to you.
Venke Midtlien says
Thank you for your amazing work! âœŠâœŠâœŠ
Sounds like you need a journalist colleague to help out with the work load, it would be difficult for anyone to cover everything, it’s years worth of poop built up into an enormous dung heap.
Helen Wojciechowski says
Thank you David ~ grateful that you keep raising the standard, in all ways, on behalf of the ME community and the scientific community at large ~ much appreciated x
Peter Trewhitt says
Thank you David, for the excellent work you are doing.
It feels it is still important to continue highlighting the failings of the psychosocial research into ME and demanding the withdrawal of the various papers involving bad science and research malpractice.
We are seeing more political recognition internationally of the need for more biomedical research in ME, and the failings of such as the NICE guidelines here in the UK and the related Cochrane reviews are now being addressed (we hope adequately). However the researchers and clinicians with ideological and career commitments to the failed behavioural treatments for ME are fighting to maintain their stranglehold and to expand their influence with the new psychiatric pseudodiagnosis of ‘medically unexplained symptom’ syndrome that lacks any meaningful evidence base.
I hope you feel motivated to seek funding for another year.
Thank you for your hard work.
I hope you continue the project. We need you.
Barbara Lees says
Thank you for all of this work, David.
I hope you continue it.
It would be particularly useful to have your continuing critique of the assumptions connected with the “Medically Unexplained Symptoms” movement.
Couch Turnip says
A big thanks for all that you’ve done over the past 6 months. It’s a shame that you didn’t get to lots of things you hoped to cover but we should all appreciate the mammoth effort that you have put in to a job that is only supposed to be part-time, and of course all that you have achieved.
I hope you do decide to continue for another year and that next time around patients dig just a little deeper into their pockets to ensure that you get fully funded. No-one else can bring together what is happening for patients with ME around the world, and I’m not sure that anyone else is mad enough to want to!
Science and medicine have a global reach and the corruption of them unfortunately does too. I’m glad to hear that you’ll be looking further into the false MUS construct that has such a stranglehold now on the NHS in the UK but that is also penetrating many other places/countries in Europe, the US, Canada, Australia and beyond, putting many millions of patients at serious risk each year.
Rigmor Duun Grande says
Thank you for all your efforts, you are a gift to ME patients all over the world! I hope you decide to continue, and will gladly give a donation. I enjoyed very much hearing you ripping apart the PACE study (in Oslo). There was a new study released here the other day, where a psychologist (mr Stubhaug) et al claims to have cured 80 per cent of 300 patients with CFS/ME in a four day course. A miracle, in other words. I think there is still a lot of ripping to do.
Thanks for the great job you’ve been doing! 😀 It’s so much appreciated. I hope you’ll continue for at least another year, there’s just endless of things that needs to be focused. So many psychobabblers, so little time!
Mary Lance says
Thank you for your fight against harmful psycho-nonsense. You are unique and the work you do is invaluable.
Thank you so much David for all of your hard work, it means so much. Please keep going, I am sure another crowdfunding campaign would be successful.
Stine BjÃ¸rnstad Wahl says
Thank You so much for youre hard work. It means a lot, and gives hope and support to so many people (and their familys) suffering from ME.
Youâ€™ve done so much, at the most important time. You deserve a break.
SynÃ¸ve Hovin says
Takk you for your important work. As some suggested above, it might be the best help you can get is a reporter. And donations.
In two weeks I have to see dr. Stubhaug to join his 4 days “miracle” treatment. Not looking forward to it. I wish the best for you, and thanks.
Carol Binks says
Thanks David. We were delighted that you were able to give two talks in Sheffield. Youâ€™ve already achieved so much in highlighting the dreadful issues in the ME arena. Please donâ€™t stop now. Iâ€™m also sure another crowdfunding campaign would be successful.
Allison Haynes May says
Thank-you so much, David, for your continuing work for pwme. Your search for the truth, for the benefit of the patients (with no other agenda), is rare and refreshing and so very much appreciated. We are fortunate to have you on our side.
Justin Reilly says
Thank you so much, David, for all you do to stand up for science!!
I for one think you do incredible work.we suffered so long without a voice. I hope you continue, and will contribute if poss. Best of luck david.
Dan Wyke says
Wow, what a busy six months! We are all deeply indebted to you for all the excellent work you do on behalf of the ME community. I really hope you decide to continue for another year. In the meantime, I shall look forward to another 6 months of your blogs, especially the interviews with survivors of the Royal Free Hospital outbreak. All the best.
Laura Whittington says
Thank you for everything you have done for pwme.
Andâ€¦ You also spoke in November 2018 at the annual meeting and special guest lecture for the Massachusetts ME/CFS & FM Association. The video of that interview/talk will finally be out this week. â€” xo Rivka
Thank you, David, for all the hard work youâ€™ve been doing! I hope youâ€™ll continue…
Thank you so much, David, for all your work for people with ME. You are doing an amazing and very valued job. Please do take a good, long holiday. I’d love to know that you can continue with this work feeling fresh and invigorated about it. Best wishes.
Thank you for what you have done so far and I hope you will keep on doing it because I believe you are making a real and valuable difference. As long as you want to keep telling the truth about ME research ethics, I want to crowdfund you.
Thank you so much for all your hard work. I would be very happy if you decide to continue with this work for another year and would without hesitation donate.
Thanks David. I’d be happy to contribute for your next 6 months. Hope you keep at it.
MARINA MONTEITH says
Please do continue after June we are in critical times with review of NICE guidelines your work is so important to keep pushing for rights of everyone with M. E. Happy to make a donation to crowdfunding.