Outgoing Vice President of Dutch Academy of Science warns of sharing data with “your enemies”

On one of his last days in office before being retired, Dr. Jos van der Meer, the Vice President of the the Royal Netherlands Academy of Arts and Sciences warned of the reputational damage risked by scientists who share their data outside their circle of close colleagues.

Dr. van der Meer made his remarks to an interviewer from the Dutch daily de Volkskrant :

“Put everything on the internet, there is always someone who discovers something. You will find in every study a mistake. It will go to details and I predict that it be enlarged in order to send the entire study to the dump. ” For the availability of data from clinical trials, there is much to do. Van der Meer knows. “There is a widespread view that conditions should be attached.” Van der Meer said that the research leaders shared indeed in recent years at the request data with colleagues. “But to give all data to your enemies.” Enemies? “Yes, there are people who have apparently interest to label this as a bad study. It is a personal vendetta against two renowned scientists. ” Apparently there is a setting error in your brain and you can turn that back with this treatment Emeritus Professor Jos van der Meer, expert on CFS Positive effect Psychiatrists Sir Simon Wessely and Peter White have become the face of the wrong turn taken by science according to patients. And that’s really strange, says Van der Meer, because the effect of behavioral therapy has been much more researched, and the conclusions were unanimous. His own research in the Nijmegen Radboud University Nijmegen Medical Centre a few years earlier than the British study also found positive impact of behavioral therapy. That that this treatment works does not mean the disease is between the ears, Van der Meer stressed. “Apparently there is a setting error in your brain and you can turn it back with the treatment.”

Dr. van der Meer’s opinions about routine data sharing are quite at odds with those of the Dutch government and scientific community. Like much of the rest of the world, the Dutch have embraced the necessity of data sharing in order for scientists and the public who fund science to get the full benefit of research.

His remarks were timed to give last-minute support to his long friend and ally Peter White in the UK. White is one of the PACE investigators facing an order from the UK Lower Tribunal to release the data from the controversial PACE trial. The widely criticized study evaluated exercise therapy and cognitive behavioral therapy (CBT) for chronic fatigue syndrome.

Apparently Dr. van der Meer was unaware that Peter White’s co-investigator Michael Sharpe had already just disclosed that results of the PACE trial were substantially poorer when evaluated with the originally declared scoring of primary outcome variables. The unanticipated revelation demonstrated the need to share the PACE data for independent reevaluation, particularly given the clinical and public health importance that has been attached to it.

Dr. van der Meer also took advantage of the occasion to spin the interpretation of CBT research for which he was senior author.

Prins, J. B., Bleijenberg, G., Bazelmans, E., Elving, L. D., de Boo, T. M., Severens, J. L., … & Van der Meer, J. W. (2001). Cognitive behaviour therapy for chronic fatigue syndrome: a multicentre randomised controlled trial. The Lancet, 357(9259), 841-847.

He failed to disclose that a decade later release of the objective performance data from his study had revealed that CBT did not affect objective performance measures. See PubMeds Commons comment here by Tom Kindlon. Only subjective self-report data showed evidence of any improvement, which are quite vulnerable to uncontrolled nonspecific influences in an unblinded study. If these data had been available earlier to independent researchers, considerable misrepresentation by the original investigators could be countered.

Dr. van der Meer also has made claims that CBT restores prefrontal cortical brain volume in patients with chronic fatigue.

De Lange, F. P., Koers, A., Kalkman, J. S., Bleijenberg, G., Hagoort, P., Van der Meer, J. W., & Toni, I. (2008). Increase in prefrontal cortical volume following cognitive behavioural therapy in patients with chronic fatigue syndrome. Brain, 131(8), 2172-2180.

The uncontrolled, grossly underpowered study has received withering criticism [ 1 2 ]. I would wager that these results would not be replicated in an adequately powered, more appropriately designed, preregistered and transparently reported study.

Dr. van der Meer also misrepresented evaluations of CBT for chronic fatigue syndrome conducted by those not directly involved in the studies who did not share the original investigators’ conflicts of interest. Contradicting his claim of uniformly positive results, the July 2016 updated review provided by the US Agency for Healthcare Research and Quality concludes there is “low strength of evidence that CBT improves fatigue” and “low strength of evidence that quality of life is not impacted by CBT”

A true fossil, after his retirement, Dr. van der Meer will be on permanent display next to the bugs in amber at the Naturalis Biodiversity Center in Leiden.

Chronisch vermoeiden op zoek naar erkenning [Literally “Chronically fatigued looking for recognition] Here is a link to the actual article.

 The article is in Dutch and below is a rough translation made by a colleague [corrections welcomed].

Chronically fatigued looking for recognition. A major study of chronic fatigue syndrome in 2011 led to much controversy. Now the fire flares up again after a remarkable statement of the British court. By Ellen de Visser September 6, 2016

The controversy between patients and scientists on chronic fatigue has reached a peak after a remarkable court ruling. A British court has determined that all the data from a study of treatments for the disease should be released to an Australian patient. The university has yet to end in question this week to appeal. Patients have since the publication of that study, five years ago in The Lancet, serious doubts about the claims. The so-called PACE study, the largest study ever done on the effect of treatment for chronic fatigue, showed that patients can recover from the disease by two types of therapy: an exercise and a form of behavior therapy. contempt The results received worldwide attention. For chronic fatigue syndrome (CFS), from which millions of people worldwide suffer, for a long time there was no cure. The disease is characterized by extreme fatigue, but also muscle and joint pain and memory problems.

“Chronically tired? Get up and move, the newspapers headed. Patients felt insulted by that message, they regarded the findings as a lack of recognition. They assume that their disease is not psychological but has a physical cause, and set their sights on the two British psychiatrists who suggested otherwise. Remarkably, in recent years there was more and more support from scientists around the world who openly voiced strong criticism of the study design, statistical analysis of the data and the interpretation of the data. The study could obviously not be blinded, so patients knew which treatment they received, and halfway they were told in a newsletter which treatments were a government commission favorite. The result was based purely on subjective data. All the objective data, for example the outcome of a walk test, could not support the findings. Criteria for participation in the study would have been dubious. Forty professors recently wrote an open letter to the Lancet in which they insist that the results should be reviewed by independent scientists. The study shows, according to them “major flaws” and thus there are “serious concerns” about the reliability of the conclusions. Good science does not need protection Slogan activists Withholding data Attempts to obtain the underlying data, encountered long time opposition by the researchers involved and the university, Queen Mary University London.

The Australian CFS patient Alem Matthees continued until the British personal data authority agreed with him a year ago. The university appealed to the court, but drew the short straw. The university believes that the release of the data damages the relationship of trust with the patients because privacy has been promised to them. But the patient data are anonymous, according to the court it is not are likely that will lead to problems. Scientists found that the withholding of data at a time of open access cannot be accepted. “Good science does not need protection,” that was the slogan of the activists during the trial.

But Emeritus Professor Jos van der Meer, expert in the field of CFS, warns of the consequences of disclosure of research data. “Put everything on the internet, there is always someone who discovers something. You will find in every study a mistake. It will go to details and I predict that it be enlarged in order to send the entire study to the dump. ” On the availability of data from clinical trials is much to do, Van der Meer knows. “There is a widespread view that conditions should be attached.” Van der Meer said that the research leaders shared indeed in recent years at the request data with colleagues. “But to give all data to your enemies.” Enemies? “Yes, there are people who have apparently interest to label this as a bad study. It is a personal vendetta against two renowned scientists. ” Apparently there is a setting error in your brain and you can turn that back with this treatment Emeritus Professor Jos van der Meer, expert on CFS Positive effect Psychiatrists Sir Simon Wessely and Peter White have become the face of the wrong turn taken by science according to patients. And that’s really strange, says Van der Meer, because the effect of behavioral therapy has been much more researched, and the conclusions were unanimous. His own research in the Nijmegen Radboud University Nijmegen Medical Centre a few years earlier than the British study also found positive impact of behavioral therapy. That that this treatment works does not mean the disease is between the ears, Van der Meer stressed. “Apparently there is a setting error in your brain and you can turn it back with the treatment.”

London University [Queen Mary London] has slightly more than one week to appeal, Alem Matthees let us know via email. The chance of this is small: the case can only go to a higher court if there has been “an error of law” and the law is misapplied. Once the data to Matthees released, anyone can retrieve them. “I am convinced that the researchers did not cheat (note from me: he uses the strange word gefoezeld)” Van der Meer said. Again no access to research data. The American professor James Coyne, affiliated with the University of Groningen, has requested information from the PACE study. He requested last year, researchers at King’s College London to provide him data from a follow-up study published in 2012 in Plos One, the cost-effectiveness of the treatments in question. The university refuses inspection. The letter of reply, which Coyne has put on his blog, the university wrote that Coyne has “no serious reasons” that he only wants to use the data for a polemic and ‘reputational damage’ threat. That refusal has once again led to angry reactions from fellow scientists. “If the university is looking for reputational damage,” twittered the British professor Chris Chambers, “then it is enough to clog research.”