Skrivet av: rebeccamw | 2020/01/03

Why I’m not renewing my SIPS membership


Society for the Improvement of Psychological Science (SIPS) was founded a few years ago and is the largest and primary international member organisation for open and replicable science in psychological science. I have attended three SIPS conferences: the second (Charlottesville, 2017), the third (Grand Rapids, 2018), and the fourth (Rotterdam, 2019). I have co-organised a small Psychology and Law conference in Indonesia sponsored by SIPS (OPLS 2019), and I have been a member of SIPS since 2017.

On August 6th, 2019, SIPS banned Jordan Anaya, an active metascientist who left the PhD program at University of Virginia to avoid continued bullying into bad science. He was banned for tweeting “fucking retards” about an unconference session on diversity that took place during SIPS 2019 in Rotterdam, Netherlands. Jordan was not a member of SIPS and he was not present during the conference. He was a concerned citizen and researcher who read the session notes and materials published in a public digital repository. He reacted on what he read with a series of tweets shared from the other side of the Atlantic (in USA), several hours after the diversity session had closed.

In a letter to Jordan Anaya, the SIPS Executive Committee describes Jordan’s tweet as “hostile, inflammatory, and ableist”. They conclude: ”Insults like yours are unacceptable at or about SIPS events. We are therefore informing you that you are not welcome to participate in events organized or sponsored by SIPS […]”

The letter from SIPS to Jordan Anaya (published with permission from the latter):

SIPS Jordan Anaya

An updated version of SIPS’ Code of Conduct (CoC) was published on their website on December 31, 2019. This version is more detailed than the previous one (see e.g. here), which is in line with their explicit aim to become harder on behaviours they interpret as harassment (this aim was expressed e.g. in an email to the SIPS community on August 15, 2019, days after the ban of Jordan Anaya).

Below I will explain why I find SIPS’ CoC problematic, why I find the ban of Jordan Anaya wrongful, and why I find the CoC and the ban to be outright harmful to the scientific community.

1. The CoC is using a sledgehammer to crack a nut.

The purpose of the CoC is very clear: “[The] purpose […] is to protect SIPS event participants from harm.” This is a reasonable goal. But the means used to reach the goal are not always proportionate. A few examples:

  • The SIPS Executive Committee does not accept anyone – including non-members – to express insults about SIPS events. (From their letter to Jordan Anaya: “Insults like yours are unacceptable at or about SIPS events.”) This means that SIPS does not allow anyone in the world, members or non-members, to insult a SIPS event. That is, one may not speak bad about – at least not in an insulting manner – any event organised by SIPS. I find this counterproductive to academic discourse: having different opinions will always risk evoking strong emotions in speakers and audience, and most people will occasionally cross the line between what should and shouldn’t be said. If we want (academic) discourse, we need to accept a certain level of communicative mistakes.
  • The CoC is to be effective not only for SIPS’ own events, but also for events sponsored by SIPS. (From the CoC Purpose and Scope: “Events” include […] activities […] sponsored by SIPS.”) This is an especially crucial point that I will get back to later in my post.
  • The CoC is to be effective also for virtual discussions. (From the CoC Purpose and Scope: ““Events” include […] online platforms controlled by SIPS”.) I would argue that virtual participation could be a great way to allow attendance and scientific discussions in a safe way even with participants who otherwise might cause a scene or harm at the non-virtual event. Treating all types of events equally seems to be a sledgehammer to me, and the purpose of it seems to be mere punishment of a transgressor deemed to be at risk of re-transgressing rather than a genuine concern of the event participants.
  • Criticism against the CoC or interpretations of it can be considered a breach of the CoC. The CoC lists behaviours they consider to be unacceptable, for example: ”Intimidating, harassing, lewd, demeaning, bullying, stalking, or threatening speech or actions; Unwelcome sexual attention; Unwelcome physical contact; […]”. At the end of the list we find the following: Advocating or encouraging any of the above behaviors”. This sentence is included in the updated CoC published on December 31, 2019. It basically means that if I say that I don’t like the ban of Jordan Anaya then I myself can be punished by SIPS, e.g. by being banned. This again is counterproductive to academic discourse and the social consequences are likely to be severe (e.g. self-censorship).

2. Bans and other restrictions are to be effective also for all events sponsored by SIPS.

This point requires its own headline because of its potentially very severe consequences for the whole psychological community, and potentially also for other social science disciplines. From the CoC Purpose and Scope: “Th[e] purpose of this code of conduct is to protect SIPS event participants from harm. “Participants” are any people present at a SIPS event, regardless of registration or membership status. “Events” include conferences (both organized activities and associated informal activities like going out to dinner), preconferences, meetups, online platforms controlled by SIPS, and other activities organized or sponsored by SIPS.”

Thus, anyone insulting SIPS or an event sponsored by SIPS can be banned from participating also in events sponsored by them. For example, I would not be allowed to invite or even accept Jordan Anaya to attend an event I’m organising if the event is to be sponsored by SIPS. The generally more harsh approach against harassment that SIPS has taken lately (e.g. expressed in an open letter to the SIPS community on August 15, 2019, from the SIPS Executive Committee, as well as in their New Year’s letter to members on December 31, 2019) implies that we can expect additional people to be banned for similar reasons.

My main concerns with the CoC being effective also for events sponsored by SIPS are the following:

  • Organisations and individuals interested in some day organising a SIPS sponsored event may become overly cautious. Being sponsored by SIPS currently means that one should be prepared to remove someone from an event even if they have done no harm to the event in question and even if they are crucial contributors to the event. One might feel safe in inviting someone who has nothing to do with SIPS, but non-members can also be banned from SIPS (as in the case of Jordan Anaya). Thus, if the invited person come to criticise a SIPS event (at least in an insulting way), then one might have to choose between keeping SIPS as a sponsor or banning the person who insulted them. Consequently, people might start adapting their plans, actions, and collaborations to not risk being turned down by SIPS. One may for example choose not to even consider speakers or collaborators known to speak freely on controversial topics, such as defending conservative people such as Jordan Anaya. Whistleblowers will likely be a significant risk group here, as will people with a working class background (according to my experience, both these groups tend to speak more freely than other academics, and they might often even be the same individuals).
  • SIPS’ ties to Center for Open Science (COS) and Open Science Framework (OSF) pose a potential threat to anyone using OSF or other services from COS. Arguably, SIPS has close ties to (COS) and (OSF), which are the other two primary open and replicable science organisations in psychology. For example, the senior founder of COS and OSF was one of the founding members of SIPS, the first two SIPS conferences were hosted and logistically supported by COS, and since the very first conference has OSF been used actively as a repository for materials and unconference logistics. COS is also hosting a number of preprint services, such as PsyArXiv. If SIPS were ever to sponsor COS, OSF, or any of the preprint services, then these organisations/services will be bound to follow SIPS’ CoC, which includes adhering to any bans or other measures SIPS has chosen to take on members or non-members. Organisations and individuals need to be aware that these risks nowadays exist if accepting sponsorship from SIPS.

3. Definitions of the unacceptable behaviours are (likely to) hit against some of the populations SIPS aims to protect.

SIPS’ CoC begins with the following sentence: “The Society for the Improvement of Psychological Science (SIPS) aims to provide a harassment-free event experience for everyone, regardless of […] caste, national origin, citizen status, age, […] disability, appearance, […] socioeconomic status […]”. So far so good, I agree that everyone has the right not to be harassed. However, when we take a closer look at the case of Jordan Anaya we can see how the Executive Board has chosen to interpret harassment: Jordan tweeted “fucking retards”. I would argue that this interpretation of harassment can exclude individuals simply due to them, for example, having a working class background. I personally come from such a background, and where I come from, these exact words are used more frequently than in academic settings. I could right now name (but I won’t) at least 5 or 6 people I know who would use “retards” as a swearword without blinking. Only 2-3 of them have taken university courses, and only one has completed a university degree. What unites them is their working class background and continued socialising primarily with working class people. Most people probably don’t use “retards” any longer, regardless of socioeconomic status and background. The word is obsolete and should not be used. But not all populations have yet updated their jargon accordingly, why claiming the word to be harassment is to add harmful intent where there may not be any. This is likely to be the case in other populations as well, not only in certain socioeconomic groups.

4. Unacceptable behaviours and their consequences are (likely to be) defined by political views rather than by what actual harm they do.

While Jordan Anaya was banned for tweeting “fucking retards” about a SIPS unconference session on diversity and inclusion, I’m not convinced the severe consequences of such a tweet had been the exact same had the person behind the tweet been someone else. Neither am I convinced the consequences had been the same if the session topic had not been diversity. Jordan Anaya was not a member of SIPS, he was not present at the conference, and he was far away from Netherlands and the conference venue when posting his tweet. I personally don’t see why such a tweet, during such circumstances, would be considered harmful enough to deserve a ban. (That said, it was absolutely foul language.)

During one of the SIPS conferences I attended, I shared room with a number of other women attendees. I had never met them before and none of them knew who I was, and none of them were familiar with the research institute I’ve founded (IGDORE). One of them continuously ignored me throughout the conference. She looked only at the others in the group when speaking. When I spoke, she seemed to pretend that she didn’t hear me, consequently interrupting me repeatedly – always without looking at me. She did not behave like this toward the others in the group. Only a few times did she look at me for a brief moment and that was when all the others were focused on me; I guess she then found no way to ignore me without coming off as rude also to the others.

Why did she behave like that? The truth is I don’t know. But I do experience this a little now and then in academia, in particular since I left traditional academia to start IGDORE, and I do have a theory: I believe (but cannot be sure) the reason was my lack of status. People can lack status in academia in many different ways. I would argue that I personally lack status due to (a) not having the proper manners expected by someone in academia (I have a working class background & I dress & speak accordingly), (b) having left traditional academia, (c) being an early career researcher, (d) not having a physical appearance that is considered beautiful in this part of the world.

However, there could also be other reasons for her behavior. For example, maybe I made her uncomfortable somehow or maybe she had a severe issue with social anxiety (this can make people appear arrogant without knowing it). Regardless of reason, I’m not interested in her being banned or otherwise punished for her behavior. But SIPS’ CoC says I should report her, and if I did, the consequences would likely be severe because her behavior toward me was far more demeaning and hostile than Jordan’s tweet was. Jordan’s tweet targeted a whole conference session and was posted over 6400 kilometers from the conference venue by a non-member who did not attend the conference. In contrast, my room mate was a SIPS conference participant, her behavior lasted through several days and was targeting me personally, and she is a member of the SIPS Executive Committee. The consequences of her behavior, according to the CoC and how it has been interpreted in the case of Jordan Anaya, would most likely be nothing less severe than a ban. (Unless the accused in this case should be judged in a more lenient way due to possibly having political or ideological views in line with SIPS’ mission, in contrast to the views Jordan held.)

Thus, if the SIPS Executive Committee want to continue their harsh interpretation of their CoC, then they should first clean up among their own. But I would strongly advise against continuing that route and I will therefore never name the person who misbehaved against me or participate in any investigation concerning the incident. We cannot throw out everyone who misbehave, SIPS would quickly become very empty if everyone started to report each other for everything that happens. We are all far from perfect. And that should be OK.

SIPS claims to work toward increased inclusion, but the truth is that they rather seem to be working toward increased inclusion of certain people with certain political and ideological views. The rest of us are not only ignored (which would have been OK), but at risk of being actively punished (which is not OK).

I came to the SIPS conference in Charlottesville in 2017 and for the first time in my academic life felt like I belonged professionally. I could finally speak openly about my experiences of being bullied into bad science. After several months of pondering about the values I believe in and how I want to prioritise them, I have now left SIPS. I do hope new member organisations will rise to defend scientific integrity, knowledge accumulation, and advanced academic discourse in psychological science. You have an enthusiastic potential member here; do call me.

Acknowledgements: I want to thank Daniël Lakens for his generous feedback on this text, and Jordan Anaya for kindly providing clarifications and the letter from the SIPS Executive Committee.

Disclaimer: The views expressed in this blog post are those of my own and are not necessarily representative of IGDORE or its affiliated researchers and organisations.

Skrivet av: rebeccamw | 2019/11/05

Why I don’t ban people


Sometimes people behave badly. Sometimes they realise the mistake and apologise and other times are they refusing. Yet other times might they not agree that their behavior was inappropriate.

I for sure have done many mistakes in my life. Probably many more than you will ever do, and that’s just the mistakes I admit to having done. I won’t go into details about my mistakes but the fact that I was taken into state care as a 14 year old due to behavior issues should give you a clue or two. So also the fact that I later became a drug addict who wasn’t ashamed to lie and deceive whenever it suited my goals. The number of mistakes and the types of mistakes most people do are not much compared with what I myself have done to people and pets I care about, to strangers and to myself.

So when someone says to me that this or that person should be banned from this or that conference, or that I should have someone banned from IGDORE, then my immediate response is always the same: then I should be the first one to go. I really mean that. Perhaps will it at some point make sense that I leave, that I leave IGDORE, a conference, or an event due to my past transgressions. But yet has no one asked me to, and yet have I never asked anyone else to.

Would there be anything anyone could do to make me think that a person should be banned?

I had a counselor I met twice weekly during 7 years until 2007 in a regional unit in Sweden for substance addicts. She once asked me to stop my habit of screaming at her because it made the other staff members and clients worried. I asked if she would throw me out if I continued screaming. No, she replied, but then we would have to meet during more secure circumstances, so that others wouldn’t feel threatened.

If I attended an event where someone became physically or verbally aggressive or abusive, then I would do what I could to convince that person to leave the room with me and others. If that wasn’t possible, then would I turn to the person(s) under attack and ask if we could leave the room together until things had settled down, and once they were safe would I make sure to call the local police for help in removing the aggressive attendee. Would I accept that attendee to participate again, the next day or the next year? Yes, I would, after I had talked to the person and made sure that the same thing wouldn’t happen again. Depending on the severity of the actions and threat might I also ask for increased security during the event, to make sure that nothing could happen again. In case of a really severe threat might I instead offer the attendee to participate remotely.

What if the attendee did not agree that it was a transgression? What if the attendee had no intention of changing behavior? What I choose to do then would depend on the severity of the transgression. But my starting point is always forgiveness and a lot of second chances. How could I ever believe in anything else without first removing myself from the events and community?

Skrivet av: rebeccamw | 2019/09/03

Pay me to live


Not me. (Image by Pete Linforth at Pixabay)

This text is a continuation of the post Call for research on DM1.

As someone living with myotonic dystrophy type 1 (DM1), the adult onset (classic) version, is it important for me to engage in regular physical activity. This may slower the process of muscle decay and strengthen my heart which may thereby extend my life span. The average age of death for individuals with the adult onset version is somewhere between 50-60 years and the cause of death is typically respiratory failure (e.g. pneumonia) or cardiac causes (e.g. arrhythmia; Die-Smulders et al, 1998; Groh et al, 2011; Mathieu et al, 1999). Sudden death is common (Groh et al, 2008; Groh et al, 2011).

As I was diagnosed at age 16 I have had quite some time to engage in activities and behaviors that could possibly extend my life. Indeed have I several times during my life being told this by friends and acquaintances: “Oh, at least you have a good reason to really get started with physical exercise!”

As psychologists do we really know how powerful intrinsic motivation can be in changing people’s habits, and there are arguably few intrinsic reasons stronger than avoiding irreparable muscle loss and sudden death. Extrinsic motivation (i.e. external rewards of some kind) can be helpful in the beginning to get the person started with a change of habit, but in the end, it is said, intrinsic motivation is what will make you keep that good habit and that is why intrinsic motivation is expected to be your better friend in the long-term.

However, psychological research has suggested that individuals with DM1 tend to lack awareness of how severely the disorder affects them (so called anosognosia; Baldanzi et al, 2016) and we tend to be more or less apathetic in many regards, including extremely tired (e.g. Rubinsztein et al, 1998).

Personally have I only quite recently started to learn about the disorder, extremely unwillingly, and only to review the research methods used in studies behind certain claims. I still to this day suddenly lose all cognitive and physical energy whenever I think about how crucial it is for me to engage in physical activities: I get immensely tired and can’t do anything else but lie down and sleep or watch Netflix. This happens even during physical activity if stricken by the thought of how important it is: in the midst of swimming laps can my legs and arms suddenly lose all strength. The fact that the expected life time for individuals with the adult version of DM1 is severely reduced has absolutely nothing to do with myself and I am quite shocked every time I read it. My previous post on DM1 was the first time ever that I wrote anything at all about the disorder, and during my research for writing up the present post was I (yes, again…) shocked about the fact that I’m not really expected to live more than another 10-20 years. This is most certainly not in line with the plans I have for my life, and – to be honest – I have no plans on changing my plans. (Although I am quite sure that the information actually will stick this time; writing things down with own words is indeed a good method to increase recall.)

I have struggled for at least 20 years to get started with physical activity. And I have continuously failed. Not only because of the thoughts of DM1, but also due to issues with social anxiety which makes me unwilling to at all engage in physical exercise in the presence of most other people. Last year did I decide to confront these issues from a more scientific perspective by organising thoughts, feelings and possible solutions on a sheet of paper. This is how I came to the conclusion that I should completely abandon intrinsic motivation and instead focus solely on extrinsic solutions: What external rewards would make me engage in physical activity? I came up with two promising rewards: (1) money, and (2) co-authorship on related scientific publications.

I am very grateful to a dear friend who allowed me the possibility last year to test the hypothesis that monetary rewards would make me engage in physical activity. I was paid about 0.5 EUR for every lap I swam (approx. 12 m), the same amount for every 2 times I jogged up a stairway consisting of 19 steps, and about 1 EUR for every 10 minutes of walk I completed.1 Important for me was that the reward was paid in bitcoin (but defined in euro).

The intervention continued during approximately 6-8 weeks and was so successful that we had to start looking at how to make it more difficult for me to get the reward since the money otherwise would end too quickly. Indeed did the money run out and this was the sole reason why the intervention had to stop. Being paid in money for every type of physical activity I engaged in made me increase the level of activity from merely walking to and from my motor-vehicle on a daily basis to do 20-35 laps of swimming about 2-5 times a week, taking a number of 10-20 minutes walk every week, and by the time we realised that the money was about to run out I was just on my way to sign up for weekly yoga and pilates sessions. It remains unknown whether I actually would have started the yoga and pilates sessions, but I personally do believe that I would have. However, the money ran out and with that all my (subjectively experienced) motivation to engage in physical activity. I went back to the default level of activity immediately once I was no longer paid for it in money (this is indeed an established shortcoming of working with extrensic motivation).

I did find other initiatives based on the same principle of paying people to do physical exercise, for example several apps. However, these initiatives seem to be so successful that they quickly have to close the community for new members to not run out of money: people seem to be very willing to keep their promises to exercise if they are paid in money for doing it.

I do want to have a long life. I do want to be here for my daughter and watch her become an adult and start her own family. I do want to engage in behaviors that increase the chances of me having a normal or at least a less shortened life span. I do however need something to drag me out of my apathy. A purely monetary2 reward did that. I believe this is an intervention that should be tested in a series of scientifically rigid highly powered experiments including patients who fail to engage in regular physical exercise despite the fact that their lives could be significantly improved by it. It would also be very interesting to see calculations of how large the monetary rewards could be while still lowering the society’s costs associated with the disorders.

Are you aware of already published research on if/how extrinsic motivation can be used to change habits in clinical populations? Please let me know in the comments below.

Interested in leading or funding such research or initiatives and want to discuss it with me? Awesome, don’t be shy to reach out. Interested in having me leading such a project? Well that’s an exceptionally bad idea (please see again the paragraphs on apathy).

1 I have unfortunately lost track of the document where the payment was specified and it is therefore here reported from memory and should thus be seen as rough approximates.

2 No damn vouchers, cinema tickets or course credits.


Skrivet av: rebeccamw | 2019/09/01

Call for research on DM1


Image by Raman Oza from Pixabay

Myotonic dystrophy type 1 (DM1 or MMD1) is an autosomal dominant neuromuscular disorder caused by mutations in the DMPK gene, located on chromosome 19. The gene in a healthy individual contains 5-34 copies of a CTG trinucleotide repeat. Any number of repeats beyond this number is classified as DM1. There is a statistically significant correlation–albeit no perfect correlation–between number of superfluous repeats and severity of symptoms: 35-49 repeats mean that the individual never gets any symptoms but their children can inherit it with an increased number of repeats; 50-150 repeats typically result in mild symptoms; 150-1000 repeats are usually classified as the classic (adult onset) version; >1000 repeats do often result in the congenital version of the disorder.

DM1 is progressive and cannot be cured. It primarily affects muscles but also other body systems. From

The muscle-related symptoms include myotonia, for which the disease is named, and weakness, particularly of the face, neck, and limb muscles that are furthest from the center of the body (the distal muscles), such as the forearms, hands, lower legs and feet. Over time, all limb muscles can become weak.

Among the most serious effects of MMD1 are weakness of the breathing and swallowing muscles and dysfunction of the heart muscle, particularly the tissue in the heart that conducts electrical impulses from one part of the heart to another.

The so-called ”smooth” muscles of the gastrointestinal tract can be affected, causing diarrhea, constipation and abdominal pain. Other smooth muscles that line the hollow organs of the body, such as the uterus and gallbladder, can be affected as well, leading to obstetric complications and gallstones.

The lenses in the eyes almost always develop cataracts, which can be surgically removed when they interfere with vision. […]

And then there are the effects on the brain, causing a range of symptoms, including learning disabilities, difficulty with decision-making, and what some psychologists have called an ”avoidant” or ”apathetic” personality type.

Excessive daytime sleepiness and chronic fatigue are among the most puzzling and troublesome of MMD1 symptoms, and their origin appears to be complex and probably related to the effects of the disease on the brain, limb muscles, respiratory system, heart and perhaps to altered levels of testosterone and insulin.

I am personally affected by the DM1 mutation with about 300 repeats, which means that I have the classic version of the disorder. I’ve been aware of this since I was 16 and got myself tested. I inherited the mutation from my father who passed away 57 years old in 2006 (primarily due to brain damage from alcohol abuse; it is however likely that DM1 played at least some role in shortening his life). My grandmother passed away from DM1 when she was 62, then weighing around 30 kg, similar to her own mother’s weight when she passed from DM1 around the age of 50.

I am 39 years old and I certainly hope to live a longer life than the previous generations with DM1 did, and I have made sure that I am the last in my family to carry the mutation. During the last two years, I have gained at least one size in clothes, but my weight has decreased with several kilos: muscles weigh more than fat and I am nowadays loosing muscles steadily. It becomes increasingly difficult to take long walks and I wake up during nights from a burning pain in the legs. My jaws get stuck ever so often and my articulation has already seen its best days–especially in English, a language that makes use of other facial muscles than my native language. My ability to swallow solid food is worsening; raw vegetables like carrots is nowadays a no-no, as is my favorite candy, and I need to cut green leaves like spinach and kale into small pieces to avoid choking. It gets increasingly difficult to clear the airways through coughing during common colds. My neck muscles are too weak to hold my head in place, and my appearance continues to change due to increased facial weakness. While I have lived with fatigue for several years already, that too is getting worse. Today I would never be able to keep a 9-5 full-time job; even 15-20 hours would likely had been over my current capacity. (Want to know how I despite this manage to engage in a full-time job as the founding director of IGDORE? Then stay tuned for a future blog post.)

Why do researchers choose an academic career? Some do because they have a very strong need and interest in finding out how the world functions; they become researchers out of pure curiosity. Others might primarily choose the science profession due to a wish for a good career and a high societal status. I personally became a researcher to help do something good for the world. I had got very interested in forensic psychology and wanted to do my part in improving criminal investigations by making interrogations with suspects more useful, adequate and ethical. I was therefore very disappointed to find that much research in this area was plagued by questionable research practices such as p-hacking and post hoc hypothesizing (also called HARKing). In addition were the studies severely underpowered, which does not only make them a waste of time and money, but also produces a high number of false positives (see e.g. Button et al., 2013, for a good explanation of why small sample sizes can increase the risk of false positive results).

It is today established that questionable research practices (QRPs), such as outcome switching, are common in randomised controlled trials (Chan et al, 2004; Dwan et al, 2011; Dwan et al, 2013), oral health (Pandis et al, 2015), psychology (Claesen et al, 2019; John et al, 2012), ecology (Fraser et al, 2018), and other fields and disciplines. Chan et al, 2004:

The reporting of [randomised controlled] trial outcomes is not only frequently incomplete but also biased and inconsistent with protocols. Published articles, as well as reviews that incorporate them, may therefore be unreliable and overestimate the benefits of an intervention.

Outcome switching in favor of variables that reached statistical significance are common in healthcare research (Page et al, 2014), surgery research (e.g. Killeen et al, 2014; Rosenthal & Dwan, 2013), cystic fibrosis research (Dwan et al, 2013), to name only a few. There is absolutely no reason to expect that the field of DM1 research is any less affected than these other medical areas. It is just that the prevalence of QRPs in DM1 research has not yet been properly investigated.

Aiming to offer at least some empirically based thoughts on DM1 research, I took a (very) quick look at DM1 research conducted in my own field (psychology). The first article I found seems to be the most recent meta-analysis of cognitive deficits in DM1 patients, published 2017 in Cortex. From this article do I preliminary conclude that there seem to be problems with at least statistical power, measurement practices, and a lack of direct replications.

For example, the average number of patients included in the 40 studies is 22 (Md; M = 28); number of healthy controls were 20 (Md; M = 24). This implies that there might be quite an issue with power, unless the true effects for a majority of the tests actually are as large as the meta-analysis suggests.

The total number of neuropsychological tests employed by at least one study was 95, covering “all cognitive domains” (p. 13 in manuscript version). The number of cognitive domains was 12. The effect sizes for 7 of the domains (namely, global cognition; intelligence; visual memory; visuospatial perception; visuoconstruction; psychomotor speed; social cognition) were classified as large. That is, the meta-analysis suggests that patients with DM1 do significantly worse than healthy individuals in these 7 cognitive domains.

How about the other cognitive domains? Well, all other domains were also negatively affected by DM1, with effect sizes ranging from small to medium. That is, there was not one single investigated area that seemed unaffected by DM1, which may be a sign of publication bias.

Furthermore, out of 128 studies deemed relevant to include in the meta-analysis, 88 were excluded: 19 due to lack of access to the full-text, 7 due to double-reporting, and 14 due to lack of sufficient details in the methods and/or results section.

The publisher’s website suggested to me another meta-analysis, published in 2019, which investigated affective disorders in patients with DM1. In the included 36 studies, no less than 22 different measures of depression were employed. The two most frequently used measures were HAM-D and BDI, which were used in 10 studies each. And again are we looking at small samples and no direct replications.

As a patient living with DM1, I am interested in learning how the disorder is affecting me or potentially will affect me in the future. In particular am I interested in learning how symptoms of the disorder can be reduced. As a researcher myself do I also understand that research is not only conducted with the primary purpose of improving the situation for patients currently living with a certain disorder. We need to–and want to–understand how the world functions and we never know when or where research will give rise to an idea that fundamentally changes everything, for example by generating a cure to a disorder.

As a patient AND researcher, I would suggest an immediate end to public funding of DM1 research that lacks statistical power because (1) it is a severe waste of time for those of us living with the disorder, and (2) it is not good science (learn why in the Button et al, 2013 article referred to above).

Further do I propose–at least for now–to not do any new investigations into the prevalence of e.g. cognitive and affective deficits in DM1 patients. By now we do seem to know that many–but not all–DM1 patients have issues in these areas, but due to the extensive heterogeneity in the DM1 population, in combination with the general limitations of psychological research, will we not be able to draw any solid conclusions about the prevalence or exactly what it is that is prevalent and not. So it is time to stop and look for more fruitful approaches, clinically and/or methodologically.

As psychologists do we already know a thing or two about more or less successful interventions to help people cope with affective disorders, and I therefore find it superfluous to get into research on how to specifically help patients with DM1 with their affective disorders. For sure could it be a viable approach to get another publication on your CV, but please don’t take that route. Instead do I suggest much more focus on the broader areas of symptoms that seem to affect most of us and to which there do not yet seem to be any really successful interventions, for example muscle loss and fatigue / daytime sleepiness.

I want to end this post with a plea to all DM1 researchers, from a DM1 patient and a fellow researcher:

Please don’t waste our time, our lives, by not reporting everything you found. Don’t omit or hide statistical tests that “didn’t show anything”. Got a feeling your results won’t hold if you do this or that with the data or tests? Please report it explicitly in the paper; be transparent about your doubts and the uncertainty of the results.

Please don’t waste our time by having unexplained deviations between your preregistration (protocol) and the scientific report. Please make sure to make the materials you used and the anonymised data publicly available in an online repository so that other researchers can build upon your work; don’t waste our lives by keeping these crucial components of the research to yourself and your closest colleagues. Same goes for the scientific report: please make it publicly available online for us all to learn from and build upon.

Please show us respect by not engaging in underpowered research. If you can’t get enough data for your study, try collaborations with other teams or to make your study design more straightforward to increase its statistical power. Other ways to solve the problem may sometimes be to employ Bayesian instead of frequentist statistics.

Have you yourself been involved in research on DM1–or research otherwise highly relevant to DM1–that you today have lost confidence in? Please write a retroactive disclosure statement, or contact me for further advise on how to disclose previously unmentioned details about the research.

This all said, I hereby want to offer myself as a research subject to well-planned DM1 research that I may or may not be a co-author of. I am willing to provide high-quality data continuously during extended time periods.

Research that I myself might be interested in co-authoring includes

  • (how) can muscle strength be improved (in patient[s] with DM1)?
  • can extrinsic motivation increase level of regular physical activity (in patient[s] with DM1)?
  • (how) can day time sleepiness and fatigue be decreased (in patient[s] with DM1)?
  • systematic meta-analytic review(s) of outcome switching, publication bias and/or other questionable research practices in DM1 research

Further, I would be interested in being a research subject (including providing data continuously during extended time periods) in areas where I lack relevant competence to be a co-author:

  • other promising approaches to cure DM1 or to decrease symptoms of the disorder

Want to contact me about research on DM1? Please use the contact details provided on my website.


P-hacking and other questionable research practices were described in the scientific literature as early as 1830 by Charles Babbage in his book “Reflections on the Decline of Science in England and on Some of Its Causes”. That was 189 years ago, and he was not the first: “That science has long been neglected and declining in England, is not an opinion originating with me, but is shared by many, and has been expressed by higher authority than mine”. Babbage wrote his impopular book because he found it absolutely necessary for academia to change in order to save science:“Of the causes which have induced me to print this volume I have little to say; my own opinion is, that it will ultimately do some service to science, and without that belief I would not have undertaken so thankless a task.”

Thanks to Babbage’s whistleblowing, academia changed and questionable research practices are today mere anecdotes we tell undergradute students during their first lessons in scientific methods.


No. Academia didn’t change and science wasn’t saved. 200 years after Babbage’s book, academia remains the same, but worse: insecure employments; unhealthy hierarchies; unhealthy work-life balance; unwanted relocation to secure a position; administrative focus on quantity rather than quality; career development rather than scientific development; fear of sharing ideas, data and materials with colleagues; publish or perish. These are the things that make us employ questionable research practices. Academia might once have been created for the sake of science, but if so, that purpose was lost a very long time ago.

Babbage described the exact same problems that we are still struggling with. He worried about too few positions in academia for scientists and that there were too many scientists–especially leaders–who cared more about their career and reputation than about science. Babbage argued that science lose out when researchers need to support their leaders to protect their own positions. “The habits of […] obedience and command […] are little fitted for that perfect freedom which should reign in the councils of science”, he wrote. He described the need for open discussion, non-anonymous criticism, and the importance of scientific discussions not being competitive or about winning. He insisted that the public had a right to read and review scientific work paid by public funds, and he expressed frustration over public funds being misplaced on irrelevant administration.

Babbage also wrote about the importance for scientists to have enough time free from teaching and non-scientific responsibilities to focus on their research. This view is brought up again 67 years later by the renowned neuroscientist Santiago Ramón y Cajal in his book “Advice for a Young Investigator”. Alex Soojung-Kim Pang (2016) writes about it in his book “Rest: Why you get more done when you work less” (p’s 20-21):

“[…] Santiago Ramón y Cajal warned aspiring young scientists that two major impediments would stand in their way as they tried to make new discoveries. First, science had become a source of industrial and political power, and growth of the scientific community, as well as faster communication within the community through journals, conferences, and newspapers, had made science faster and more competitive. No longer could scientists afford to “concentrate for extended periods of time on one subject” […]. One had to hurry to stay ahead of the competition. “Research is now frantic,” he warned, and this meant that fast, superficial science – and lots of it – won over slower, deeper, and more profound work.

Second, most scientists assumed that long hours were necessary to produce great work and that “an avalanche of lectures, articles, and books” would loosen some profound insight. This was one reason they willingly accepted a world of faster science: they believed it would make their own science better. But this was a style of work, Ramón y Cajal argued, that led to asking only shallow, easily answered questions rather than hard, fundamental ones. It created the appearance of profundity and feelings of productivity but did not lead to substantial discoveries. Choosing to be prolific, he contended, meant closing off the possibility of doing great work.”

To do good science, we need “cerebral polarization or sustained concentration” (p. 30), Pang reports from reading “Advice for a Young Investigator”, and we need rest (p. 31):

Diversions that are “light and promote the association of new ideas” are to be taken freely. Long walks, art, and music offer good material for a break. And if, after a period of sustained concentration, a breakthrough does not come, “yet we feel success is just around the corner, try resting for a while.” A few weeks of “relaxation and quiet in the countryside brings calmness and clarity to the mind”, and provides “intellectual refreshment.” Even getting there can provide creative stimulus: “the powerful vibration of the locomotive and the spiritual solitude of the railway car,” he says, will often “suggest ideas that are ultimately confirmed in the laboratory.”

The replicability revolution we currently see, primarily in the life and social sciences, calls for increased scientific rigor. Just like Charles Babbage did 189 years ago. What is the difference now? Why would we succeed this time?

The answer is that we now have computers and internet and that the current revolution is co-occurring with a different movement: the movement for open science.

By coincidence, the movement for open science can actually also be traced back to Charles Babbage. One of the early computer pioneers, Babbage can arguably be considered to have played at least a small role in sparking the openness movements that later emerged during the early 1980’s with software developer Richard Stallman at MIT and the free (libre) open source software movement. The openness movements have offered empirical scientists the tools we need to improve the scientific rigor of our work: open data; open code and materials; version control and digital preregistration; open and rapid access to scientific reports (e.g. preprints); open licenses (e.g. Creative Commons); unrestricted word limits in scientific publications. Today we finally have a reproducibility movement, hand in hand with the openness movements. And this is why we have such a great potential to succeed this time.

The reproducibility movement became a movement, especially in psychology, some time during 2010-2011. University of Virginia was and still is one of the epicenters for the movement through the important and hard work by scholars such as Brian Nosek, Barbara Spellman, and Jeff Spies. This year, the movement–or revolution as it is often called–has been ongoing for 9 years. Brian Nosek (2019) recently posted on Twitter about a new form that faculty members at the university must complete, including the following items:

  • Number of completed peer-reviewed publications
  • Number of unpublished/incomplete active projects
  • H-index
  • Cumulative citation count
  • Annual citation count
  • Annual patents count
  • External invited talks count
  • Books published count
  • Book chapters count

9 years at the epicenter of revolution, and this is where we are?

Academia remains the same and I fear that the only change we will accomplish within the current system is to raise the stakes; adding pressure to already stressed out researchers by telling them that they now also need to conduct science in new and additional ways.

  • Number of completed peer-reviewed publications
  • Number of completed peer-reviewed publications that are open access
  • Number of completed peer-reviewed publications that were preregistered
  • Number of completed peer-reviewed publications with open data
  • Number of unpublished/incomplete active projects
  • Number of unpublished/incomplete active preregistrations
  • Number of preprints that are not yet published in a peer-reviewed journal
  • H-index
  • Cumulative citation count
  • Annual citation count
  • Annual patents count
  • Annual open licenses count
  • Annual open badges count
  • External invited talks count
  • Books published count
  • Book chapters count

Raising the stakes at this point, in traditional academia, is not the solution we are looking for. Academics will find shortcuts to meet the new requirements for publication, just like they did with the previous requirements.

The goal of academia has for at least 200 years primarily been to make money to fund expensive and inefficient habits such as superfluous administration; buildings; subscription fees for access to scientific articles; and more recently, to fund proprietary software. I think it is pretty fair to say that academia has become counter-productive to science. The change we are longing for can thus not be found within the existent academia. Not 189 years ago. Not 9 years ago. Not today.

So what is the solution?

I believe the solution is pretty straightforward: science would be better off without academia, so why not cut the ties? Many of the great discoveries did not come from the universities, Babbage (1830) pointed out, but from scientists working for themselves. Researchers don’t need academia, we never have. We can organise ourselves in other ways or reinvent academia from scratch: less and more efficient administration; cheaper buildings or no buildings at all; open access (or Sci-Hub) instead of subscriptions; free and open source software; location independence to allow researchers, students, administrative and technical staff to work from wherever they want to or need to be; and completely flexible work hours (researchers should probably not count work hours at all).

Researchers have tried for at least 200 years to change academia and they have all failed. So would we. So let’s not do that. Let’s instead build something new, a new academia. We can create many new ways for scientists to organise themselves. Maybe something like IGDORE or Ronin. Maybe something different. Let’s try, shall we?


*Babbage. C. (1830). Reflections on the decline of science in England and on some of its causes. London: B. Fellowes, Ludgate Street; J. Booth, Duke Street, Portland Place.

Nosek, B. (2019).

Pang, A. S. K. (2016). Rest: Why you get more things done when you work less. Penguin Random House UK.

*Please forgive me the sloppy Babbage references. They are based on personal notes I made while reading the book and I had not recorded the page numbers. I’m happy to help you find the page source for a particular statement should you not be able to find it yourself.

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