I appreciate all the Facebook friend requests that I have recently received. Some of the increased volume of requests is tied to my activism concerning the PACE trial of cognitive behaviour and graded exercise therapy for chronic fatigue syndrome/myalgic encephalomyelitis (commonly hashtagged as #MECFS).
My Facebook page provides a front row seat, where visitors can get a first view of not only my blogging, but direct actions I take to challenge the:
- Bad research practices of PACE ranging from its poor design as a clinical trial, failure to deliver what was promised in the trial registry, and shamefully bad statistical analysis.
- Bad publication practices that put the flawed science of PACE into prestigious journals without adequate peer review.
- Extraordinary publicity machine that has led UK media to utterly fail as a filter on the PACE investigators’ exaggerated claims and unreported conflicts of interest.
- Strange plutocratic politics of the UK that seriously compromise the funding, peer review, and dissemination of research that directly impacts on public health and individual well-being.
Anyone can come to my publicly accessible Facebook page and find the latest news to either read in, get as takeout or to freely distribute. Anything that I place on my Facebook page is meant to be distributed elsewhere, although I appreciate it when people acknowledge where they got it.
But long before I paid any attention to PACE, my Facebook page was already developing quite a following. My page is very different from most Facebook pages because my frequent posts are distinctive and diverse and often uncategorizable ways. Except maybe that they pull together an irreverence, a skepticism about what I read in the media and the scientific literature, and an insistence on best evidence as a way of resolving important controversies.
I continue to welcome friend requests from people who don’t see the relevance of the trial PACE or ME/CFS to their own lives. I expect that they will still make up the bulk of visitors to my Facebook page.
Regardless, I welcome all the new friends wherever they come from, as well as visitors wandering through without being interested in joining in.
However, my Facebook page remains just that – my own Facebook page. It has a much broader function. I don’t want it to become a general message board where people post information they want to reach a larger audience. I also want to preserve the diversity of those who come to my Facebook page to comment and to take away information to share elsewhere. I want to attract such traffic with a diversity of posts.
So, expect me to continue to post a broad range of material that I find interesting. Much of it comes from social media gathered in my efforts to write about various topics, both in blogs and in scientific articles.
I don’t always agree with what I post. My posting does not necessarily represent endorsement. Some material is chosen because it so outrageously offends my sense of good science or social justice. Some of what I post is satirical, but devilishly so hard to distinguish what is presented as proof in the larger media. Some of what I post to simply ambiguous as to whether it is true or satire challenges visitors to rethink a sharp distinction that they may hold.
It’s understandable that the influx of new Facebook friends often includes people who don’t understand what I am up to. Often innocently, they sometimes try to postings on my page, not noticing that is decidedly not a general message board.
I need to get clear about that.
Expect me to increasingly remove material that others place on my FB page, even when it’s quite good. I do not want to encourage the idea that this is a general message board or that its focus is narrower than I would intend.
[Update: I have now chosen a FB setting that allows me to moderate what is posted on my wall. Thanks to those who suggested this.]
I hope implementing this process will not cause great offense. I also think that, in particular, members of the ME/CFS community can appreciate that I more effectively serve their interests, which is one of my goals, if I involved broadest possible audience in the broadest possible definition of the issues posed by the PACE trial, namely, bad science allowed by bad publication practices, and promoted with harm to the patient population that is supposed to help.
Recently I posted at Mind the Brain an article that had absolutely no direct relevance to chronic fatigue syndrome or the PACE trial. Some people were confused and asked “how is this relevant to CFS?” The simple answer is it was not.
I should also be clear for those who don’t know already – PLOS One is squaring off with its lawyers against the PACE investigators and their lawyers who are resisting given me the data promised by the PACE investigators having published in PLOS One.
It’s also no secret that Richard Horton,* editor of The Lancet has put pressure on the PLOS management to quiet me down at both at their blog site and in social media. Yup, Horton demanded that PLOS clamp down not only what I upload to their blog, but what I say on Twitter and Facebook.
That is one of the many reasons I think it is best for both PLOS One in its struggle with the PACE investigators for the data I requested if I avoid the appearance of a conflict of interest in using PLOS Mind the Brain for activism concerning the PACE data. So, I’ve taken the PACE discussion to my alternative blog Quick Thoughts where I have to worry less about making PLOS nervous during this legal struggle.
I strongly promote PLOS and work long hours for free as an academic editor for PLOS One because I am committed to the values that it represents. I’m quite critical of PLOS when I feel its journals depart from those values. Ultimately, I am more loyal to those values than to PLOS.
Some people get a bit confused by my past going public with criticisms of PLOS and I have had to explain our complex relationship. I believe that going public was the thing to do. When issues were satisfactorily resolved, I said something that I often say on Twitter: PLOS is by no means perfect, but it generally does a good job of acknowledging and trying to fix its mistakes.
PLOS and I are close, but we do not sleep in the same bed.
PLOS is well aware I also can use the Quick Thoughts blog to target PLOS if it doesn’t deliver on the data or retract the paper. I don’t think it’ll come to this, but my Facebook wall certainly could be a place where a general strike of the over 4000 PLOS academic editors could be organized – if PLOS dropped the ball and weakened their data sharing policy.
Stay tuned, if I ever had to resort to such tactics, you’d probably see it announced first on my Facebook wall. But I doubt it will happen.
Finally, taking the discussion off Mind the Brain also allows me to poke fun at the laughable Richard Horton without having to worry as much about him pressuring PLOS. Visit my Facebook wall and you will be seeing more discussions of Horton Hatches the Egg.
If you don’t know much about Horton and the Egg, here is a vintage full length cartoon. Ponder the many ways in which it could be relevant here.
*Richard Horton is @richardhorton1 on Twitter. His Twitter account announces
Now, ponder what that could possibly mean. From what direction is Horton attacking the present?
An update [January 9, 2016, 9:42 am]
I appreciate the attention that this modest blog post has received in the social media, including more requests to become my friend on Facebook. This further attention suggests some updating of what I previously posted.
First, there have been numerous requests that if my Facebook page is not going to be devoted to debunking the PACE trial or providing information about chronic fatigue syndrome/myalgic encephalomyelitis**, I should start another page that has that specific focus.
The problem with this suggestion is that I simply don’t have the time and I’m just one person. I do all this on my own time with uncertain payoff. I have enough work already just keeping up with continued academic output and the workshops, as well as the blogging and the curating of my presence on social media. And though I’m giving a lot of attention to certain issues, I don’t want to – as some patient-activists warned me – fall down the rabbit hole. I want to keep a broad focus.
However, I make my material freely available, and so if someone else wants to set up a distinctive page, they can feel free to do so. They can make use of my material, hopefully giving credit for its source, but they can’t claim that they represent me or that I have approved what they do. I think that is what some patient-oriented Facebook pages are already doing, and that is fine.
Secondly, I appreciate all the requests to be Facebook friends. I have no illusion about what being a Facebook friend means – with almost 4800 friends, I can’t claim to have met many or most of you.
You are not necessarily offering much in asking to be my friend on Facebook, nor are you expecting much. If you flood me with “happy birthday’s”, I will be appreciative but I don’t expect we will be sharing birthday cake.
But if becoming a Facebook friend means simply expressing interest in what I post and possible interest in sharing it or commenting, fine.
I have been mostly agreeing to becoming friends with people who ask, but I sometimes get some strange requests. In this category, I would include requests from women who don’t seem to have any connection to me and have no evidence of shared interests. If I try to look at their Facebook pages, all I see are some attractive and sometimes provocative photos and no other content. If I make a mistake of agreeing to be a friend on Facebook, I begin getting some overly personal back channel messages, some persistent to the point where I have to defriend or block somebody.
So, if you send me a new request be friends on Facebook, it helps if your homepage indicates some shared interests. If not, I’ll have to decide whether to accept your FB friendship on the basis of you being friends already with people who are my FB friends. That will work for most people.
But some people are brand-new to Facebook and don’t have such connections. For them I would recommend dropping me a brief note, indicating why they want to be friends or what the connection is.
I think that will be easier on all of us.
**PS. An e-book? I’m wondering if one solution for managing some of the material I’ve been producing concerning the PACE trial and MECFS is for me to assemble an inexpensive e-book with material and additional commentary and resources. Is there an interest in that?