By David Tuller, DrPH
The Norwegian tabloid Dagbladet, taking a page from prestigious UK news organizations, has recently published a series of articles portraying ME patients as anti-scientific and belligerent. As I noted in a letter to Dagbladet two weeks ago, the journalist also misrepresented my academic and professional credentials. Since I didn’t hear back, I recently posted both my letter and one sent to Dagbladet by Professor Jonathan Edwards.
To my surprise, earlier today I received a letter from someone at Dagbladet–an editor named Hilde Schjerve. I have posted her letter below, followed by my response.
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Dear David Tuller
I got this email forwarded today regarding an article on ME in Dagbladet. [She is referring to the e-mail I sent two weeks ago.] On the behalf of Dagbladet I will apologize the delayed response.
I understand the article omits that your are a senior fellow in public health and journalism at the University of California, Berkeley. Our journalist has only referred to the blog because NAFKAM €“ Norwegian health authorities´s official information web site about complementary and alternative medicine (CAM) – used the blog in their critique of the Lightning Process. But of course, we fully understand that your academic background is relevant regarding this topic, so we have updated the key information about your academic credentials.
This afternoon our reporters also got an email from Eva Stabell, the international officer in the Norwegian Union of Journalists regarding both the missing academic credentials and a question if we could publish one or two (?) chronicles written by you and professor Jonathan Edwards, Stabell referenced this link: https://www.virology.ws/2020/05/30/trial-by-error-two-letters-to-dagbladet-about-its-me-coverage/.
Just to make sure that I understand this right: You want us to consider to publish 1. Your e-mail dated 22nd of May. 2. Professor Edwards letter 3. Your letter?
Please get back to me as soon as you´re able.
Best regards,
Hilde Schjerve
Editor/Redaktør
Dagbladet
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Dear Hilde–
Thanks for getting in touch with me. Both Professor Edwards and I waited for an appropriate period of time, and then I published the two letters on Virology Blog because Dagladet did not–even though, as I understand it, you acknowledged the letter from Professor Edwards. (I have cc’d him here.)
So, yes, at this point, I believe Dagbladet has an obligation to publish: 1) the letter I sent to you on 21st May (I guess you received it on 22nd May), and 2) the letter Professor Edwards sent to you. Two letters. (Not three, as per your three points above–I’m not sure what the third point is referencing.)
I understand why the journalist might not have checked my credentials. If that were the only problem in the series of articles, then I would chalk it up to a momentary and inadvertent slip-up. As it is, that misrepresentation was just one small example of how the series misrepresented the entire situation–not just my academic and professional background.
So beyond the issue of the letters, I need to say this: Your reporter and your publication have done a disservice to a vulnerable group of people by publishing articles containing such misleading information about the Lightning Process, the patients who object to this research, and the solidity of the earlier study on the Lightning Process.
As just one example, the journalist mentioned the defense of the earlier Lightning Process study offered by one of its proponents–that there were some minor concerns that had now been somehow addressed. The journalist could easily have looked beyond that silly claim. She should have mentioned the disastrous mistakes made in that study and the 3,000-word correction appended to it last summer. She should also have mentioned the open letter sent last November to BMJ editorial director Dr Fiona Godlee and signed by 70+ scientists, clinicians and other experts from Columbia, Berkeley, Stanford, University College London, Queen Mary University of London, Harvard, and on and on.
That letter criticized the Lightning Process study harshly for its many methodological and ethical errors and expressed dismay at BMJ’s decision to republish the findings. To portray concern about this unacceptable trial and other sub-par research as limited to “activist” patients is absurd. The proposal for the new Lightning Process trial is fraught with basic design flaws. Patients have a right to make cogent and articulate arguments about problematic research without being accused of engaging in harassment. Lightning Process advocates who cite the previous research are the ones making irrational and anti-scientific pronouncements–as the open letter to Dr Godlee makes clear.
Your reporter and your news organization appear to have launched this project with a built-in bias. The decision to present such a one-sided portrait of the dispute represents an alarming abrogation of journalistic responsibility. Shame on you.
Please send me a link when Dagbladet has published the two letters. For full transparency, I expect to publish this correspondence on Virology Blog.–
Best–David
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
Dear Mr. Tuller. I cannot say what Your accurate and velargumentet respons means for many thousands Norwegian ME-patients. Hopefully Your letter will reach the ethical comitee in Norway that will eigther approve or not-approve the LP-project that will put many people at risk of worsening their illness or reduced their selfconfidence by not being able to meet the researchers expectations regarding acting and thinking themselves healthy. Big, thankful hug, from a bedbound and relatively peaceful activist. PS you make me so proud when You point out the damage it did to a vounereble population is more inportant than the wrong title. You are a hero ☀ï¸â˜€ï¸â˜€ï¸
At least the paper is now attempting to engage.
Let’s hope they are beginning to realise that they had published grossly inaccurate information based on a biased source, to the harm of people with ME/CFS in Norway.
Though their Original failure to undertake even the simplest of fact checking or invite comment from those they traduced is disturbing.
The recipients of your letters should do some due diligence, figure out what is going on, and get off the wrong track and onto the right one (yours – ours) before their reputations are shredded by their own (in)actions.
The longer and more complicated the misinformation, the harder it is for them to come out not smelling like skunk.
Thank you, David.
Thanks for speaking up for the thousands of us who have become too weakened by ME/CFS to properly defend ourselves against attacks of misinformation like this.
Thank you for tirelessly pointing out THE ACTUAL FACTS, when they are being ignored.
Thank you â˜ºï¸ – ME sufferer, Norway
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I hope Dagbladet will promptly publish a correction. And I wish it was just down to someone not digging deep enough or demonstrating a lack of understanding, instead of deliberate misrepresentation and bias, as in this case.
On point! Thank you!
Thank you.
I sent an e-mail to Dagbladet on May the 16th about the same article and I only got a reply that “we received your e-mail”.
Thank you so much for taking the battle for us.
Let’s hope Dagbladet realizes now that they don’t want to be on the wrong side of history. Many thanks for persisting with this David, and many thanks to Professor Edwards and also to Eva Stabell for understanding the importance of this and contacting the paper.
I’d like to add my thanks. I hope the publication sees reason. Maybe they’ll have a change of heart and in the ‘poacher-turned-gamekeeper’ manner decide to advocate for good science instead? We can but hope.
Thank you from the bottom of my heart. This means very much for us with ME in Norway.
Thank you! This mean so much to us all. We really do need someone to straighten up the facts. Namaste from Norway 🙂
Thank you so much David! Thank you for fighting for all of us. So well and accurate written. This give me hope, hope that the right thing will be done. From Lise in Norway
Thank you David for standing up for us.
Thank you, David. Hopefully, Dagbladet will see it’s unprofessional for journalists to write these articles about The Lightning Process if they don’t want to talk to the ME-patients, the ME-scientists and their reasons to protest. It is questionable whether that was a good decision – but maybe they have now been advised to communicate and close the discussion..?
The work you are doing is so important that I feel it’s difficult to put it into words. You can’t trust scientific journals to perform proper peer-reviews anymore. That’s why independent scientists, without any incentives towards any one outcome, who go deeper into the subject matter is so valuable. You are sort of a meta-peer reviewer, a peer reviewer of the peer reviews. Thank you for your dedication and your hard work!
THANK YOU!
The problems with peer review are many -https://www.theguardian.com/commentisfree/2020/jun/05/lancet-had-to-do-one-of-the-biggest-retractions-in-modern-history-how-could-this-happen . To help remedy this situation, journals should respond properly and swiftly to criticism. That can’t mean charging people who raise issues with harassment.
As David wrote:
“That letter criticized the Lightning Process study harshly for its many methodological and ethical errors and expressed dismay at BMJ’s decision to republish the findings. To portray concern about this unacceptable trial and other sub-par research as limited to “activist†patients is absurd. The proposal for the new Lightning Process trial is fraught with basic design flaws. Patients have a right to make cogent and articulate arguments about problematic research without being accused of engaging in harassment. Lightning Process advocates who cite the previous research are the ones making irrational and anti-scientific pronouncements–as the open letter to Dr Godlee makes clear.”
what ever happened to RNaseL and Ampligen? When I got ill 28 years ago it was supposed to be a biomarker for the illness. I had a test done in Brussels with Dr Meirleir and it was normal. But I definitely had ME even though it was mild to moderate. Some doctors including Dr Meirleir claimed it did wonders for some patients. Never hear anything about it anymore. WHat happened?