Ringing in the New Year and looking ahead

It’s been a wild year. Looking back, I certainly couldn’t have anticipated what’s happening now from last New Year’s. And I am not sure that any predictions about the next year from the vantage point of tonight will prove any more accurate.

As expected, I went off to Scotland in March for a Carnegie Centenary Visiting Professorship at Stirling University, but living in Edinburgh. That began five and a half months of giving academic talks throughout the UK, but also public engagement in the form of Skeptics in the Pub talks across Scotland and a Cafe Scientifique in Inverness. My blogging became more regular, but also controversial.University_of_Stirling_-_Airthrey_Castle

I quickly found that criticizing Understanding Psychosis, the absurd book-length output of the British Psychological Society (BPS) brought a lot of harassment, spamming and sock puppet trolling of my blog sites, and even letters from President-elect of the BPS Peter Kinderman to my institutional affiliations demanding that I be muzzled in the social media. I weathered that, although you’ll be hearing more about it in the near future.

brisbaneIn August I went off to Australia for a multi-stop trip tied to a Distinguished Visiting Professorship with Australian National University in Canberra. I thought that the overwhelming reception of a hastily arranged keynote on the pseudoscience of positive psychology at the Australian National Skeptics gathering in Brisbane would mark a sharpening of the focus of my blogging on positive psychology and maybe the blogging would turn into an e-book.

At the time, I looked forward to providing citizen scientists with a healthy skepticism and the tools to decide for themselves about what to accept and what to reject from the gurus marketing all kinds of positive psychology products. Positive psychology is a multi-million-dollar enterprise, with its merchants claiming that what they offered was more sciencey than the competition selling similar self-improvement nonsense.

But then I got involved in the controversy over the badly conducted, badly reported PACE trial of cognitive behavior therapy for chronic fatigue syndrome. I was initially attracted to comment on the trial as a textbook case of questionable research practices appearing in the literature because of questionable publication practices and then being hyped by a social and conventional media that was not serving the function of filtering investigators’ excessive and self-serving claims. As I announced in a blog post, I was declaring the moral equivalent of war, although I soon figured out that a lot of people were confused by this reference to Jimmy Carter and Woodrow Wilson before him.

I decided that PACE mess would replace positive psychology as a focus for my efforts to develop skeptical citizen scientists. My engagement in the PACE controversy moved from commentary to activism when I demanded that the PACE investigators provide me with data for reanalysis as they had promised in the publication in PLOS One. The investigators refused to hand over the data in what was a nasty, unprofessional, personal response. In coming weeks, we will get a clearer picture of where this is all going, but expect activism as well as commentary from me.

The year in numbers:

  • Both my followers on Twitter and my Facebook friends passed 4700 and look to keep going up.
  • A slideshow from another hastily arranged pub talk, this time in Edinburgh, received over 11,000 visits.
  • After I I declared the moral equivalent of war on the PACE trial in visitors to Quick Thoughts, what had been only a secondary blog jumped to thousands every month. Three months visits exceeded the total previous number across a couple of years.

I know, all the rapid and unanticipated change was confusing to many. I look to provide some clarity in the next few months, but who knows what will be coming

I’m now signing out for 2015, but to ring in the new year, I leave you with my favorite Peter Gabriel piece, Bol Ke Lab Azaad Hai Tere [“Stand up, speak out. From within.”]. It is with Atif Aslam and based on a kalam written by Faiz Ahmad Faiz.

It’s hauntingly beautiful, appropriate and inspiring. But you won’t find it any of his albums and extremely hard to find, but I think it’s a great listen as you begin the new year. Enjoy!

 

Happy New Year.

 

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11 thoughts on “Ringing in the New Year and looking ahead

  1. Thank you for sharing the backstory to your involvement with the PACE trial.

    We are so fortunate that you have taken up the case of exposing the problems with a trial that is used to justify pushing these controversial treatments on patients. It seems incredible to me that the harms reported by so many patients can be so utterly ignored and disregarded.

    Here’s to 2016, and a new optimism for ME patients like me!

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  2. Interesting, looking forward to seeing how things progress in 2016. Of course the whole CBT/GET school of thought shares much with postive psychology and its victim-blaming, try harder, think better thoughts approach. Time long past for the whole lot to recognised as the quackery that it is.

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  3. I add my thanks! I hugely look forward to both your commentary and your activism. I don’t see any hope for improvement in my health in 2016 but I do see hope for change on the political stage in terms of my disease, ME. Much of that is down to you.

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  4. Thank you so much for everything you’ve already done for ME/CFS patients in exposing the bad science of PACE. It means an enormous amount to patients.

    There are an estimated 17 million of us worldwide, all without effective treatment. A lot of that is down to the psychosocial researchers who have benefited from presenting this as a psychological condition, with the result that biomedical research has been starved of funds.

    You’re helping so very many people. Thank you, and Happy New Year!

    Can’t wait to see what you’re going to do in 2016.

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  5. The entire behavioural literature on CFS is suspect. I’m not a researcher but even I can see obvious logical or methodological flaws everywhere. The most common problems I notice are a failure to properly test the hypothesis (it seems that authors in the field are generally content with speculation), equating correlation with causation, and failure to consider alternative explanations (authors almost never consider anything other than a psychosomatic explanation), reliance on questionnaires when better alternatives such as cardiopulmonary exercise testing or actimetry exist (questionnaires results are easy to bias, and bias is probably necessary to get any “positive” results), and inadequate control groups (again introducing the much needed bias). It’s also common for authors to redefine CFS as it suits their needs which is also suspect. I doubt there are any real results beneath all the spin and bias because if there were they could afford to do proper science.

    In other words, I believe the whole thing is a scandal waiting to be exposed. It must be exposed because it has done so much harm. Patients are suffering and dying without anyone having a good idea on how to help because the psychosomatic explanations have stifled biomedical research. Several biomedical researchers have mentioned that their research proposals have been rejected on the grounds that CFS was psychosomatic.

    I was pleased to discover that many academics are concerned about poor quality of research. The problems are so obvious that drawing attention to this area may be all that is needed.

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  6. Dr Coyne,
    In addition to Facebook, Twitter, and your blogs, you also have a very large fan club on the Phoenix Rising forums. A discussion of your essay “What it takes for Queen Mary to declare a request for scientific data “vexatious”” has over 500 replies and nearly 25,000 views!

    Your work to expose the PACE fraud is a bigger boost to patient morale that all the NIH, CDC, and NHS press releases, pronouncements, and meetings put together. Regardless of how the attempts to obtain the data turn out, the Wessely School can not stuff the PACE null results back in the bottle. Patients are eager to see what develops – it will be entertaining, if nothing else.

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  7. Thanks so much for what you are doing to bring proper academic scrutiny to the PACE trial, as well as for championing the value of citizen scientists. Surely what should really matter is the quality of the comment/critique, not what it says on a diploma.

    And I always enjoy the musical education that comes with your blogs too.

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  8. As we leave 2015 it feels as if a wide window has been thrown open and a welcome blast of fresh air is rushing in on the mess, waste and downright injustice to PWME represented by the flawed PACE trial. Thank you so much Prof Coyne, for shining a light in some very cobwebby corners. And hats off too, to David Tuller, for his heroic original blog, Trial by Error.

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  9. Thank you for bringing the reason and logical thinking back to the ME community. All your questions are so valid. I would like to see a few things happen next year.

    1) Why the people committed in several countries against their will for so long, receiving the therapy, keep getting worse EACH YEAR, and even after having no results after so long and the obvious deterioration, they keep the same insanity of a therapy. Can they be freed up???

    2) Somebody with connections and the resources can follow the green: Why so many paid articles in the media, why go to such lengths to make such a great campaign. Every time a physiological article went out it was buried by so many of PACE (like an organized well paid campaign). Why so much effort to deny the data. WHO can pay so many trolls that we get to discredit every single advance paper we see. Even in your blog they showed up!!!!
    Why go through all the trouble to maintain the PACE going on. What is PACE really all about? What is the real reason behind the whole charade?

    3) Why ONE paper have more power (PACE) than all the 2,000+ physiological papers NOT FLAWED that explain all the abnormalities on ME.

    4) Why if we found a exercise 2 day challenge that can show ME, we do not use it to identify people and demonstrate and separate those with general fatigue vs ME, heck retest results of PACE with it.

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  10. Thank you so much for your help, Dr Coyne.

    Your commitment to seeking the truth, speaking the truth, and helping patients who cannot defend themselves, are all hugely appreciated.

    I wish you the best of fortunes in 2016!

    Like

  11. Thank you for writing about CFS and the PACE Trial. By following your blog, the comments made through twitter and the many links provided I have gained much needed insight into my illness.

    Like

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