I am writing this piece to offer Dorothy Bishop & Stephan Lewandowsky some patient perspective on their joint piece in Nature : “Research integrity: Don’t let transparency damage science”. Specifically, I would like to add some context to this line in particular:

“When people object to science because it challenges their beliefs or jeopardizes their interests, they are rarely committed to informed debate.”

Imagine, you have a disease that is the subject of much scientific debate. It has no singular or universally accepted diagnosis or cause. The number of different treatments and therapies that claim to treat its symptoms or cure it outright are so numerous that neither you, nor your Doctor can keep track of them. In fact there are so many, that you do not even have the time and energy to learn of their existence. You unavoidably and perhaps unwittingly become both researcher and participant in a lifetime of self and joint experiments. Your very existence is about testing theories and beliefs. This, is what it is like to have ME/CFS.
Indeed science can be challenging and many in the ME/CFS community have yielded to that challenge when it is substantial and insurmountable. Take the XMRV issue, a lot of patients, myself included wanted to believe that XMRV was going to be the answer. It was in our self-interest that we had clear, testable cause for our disease and we could begin to focus much more energy on supporting efforts to devise treatments. As it turns out, XMRV wasn’t the answer, replication after replication attempt failed, science was very clearly done and the majority of the community has moved on. I know there are still some that are interested in the idea of a non-XMRV retrovirus, but I think the larger focus has shifted towards research in auto-immunity with the recent excitement surrounding Fluge & Mella’s Rituximab research.
An objection towards a specific piece of science can be raised for a number of different reasons. The most obvious would be on ethical grounds – where the safety of participants cannot be guaranteed and the justification for the risk involved is unconscionable. Other reasons to object to a piece of science are: poor design, its conclusions are used to justify subsequent actions that the data does not support, it is funded by parties with an obvious interest ‘In Results’ rather than ‘In The Results’ (there is a huge difference) or it has been challenged by both academics and citizen scientists and found lacking in several areas.
As it turns out, all of these valid objections can be directed towards the PACE trial. The PACE trial is used not only in British medicine, but in many other countries as an ‘evidence base’ for the safety and efficacy of using CBT and Graded Exercise Therapy (based on the idea that the patient is avoiding activity out of fear and there is no perpetual state of physical illness) as safe and effective treatments for ME/CFS. In reality, several studies have shown measurable, adverse reactions to exertion, in some cases this was in comparison to sedentary controls. Peak oxygen uptake tests have shown that patients’ fitness actually decreases on repeated exercise. Professor Julia Newton has shown that her cohort of patients (in particular she looks at those with co-morbidities like POTS and Postural Hypotension) on exertion produce 20x the muscle acidity of healthy controls.
It is a sad situation with ME/CFS that Science is still in the process of determining what it is actually studying, all these years on. It used to be the case that ME was seen as a post-viral state as it was observed in clusters like, the Royal Free hospital or Lake Tahoe. But now the wider ME/CFS cohort accommodates both viral and gradual onset fatigue in addition to other types of causation. Since there is not a singular, accepted diagnosis for ME/CFS, a lot of research is focused on the unifying symptom of fatigue. There is also a reasonable volume of research based on more substantial diagnostic criteria such as CCC or ICC. Despite extensive and dedicated work by committed researchers, the lack of a universally accepted diagnostic criteria shows that it is clear the epidemiological work on MECFS is far from complete. The funding has never been there to complete it either. My patient, non scientist perspective is that for the time being there should be a shift in focus (though not a complete abolition) away from diagnostic criteria and instead a move towards reporting symptoms and causative differences for each individual patient in MECFS research. I think this sort of reporting could really help make up for the dearth in Epidemiology.
The aforementioned lack of knowledge and specificity alone create a reasonable argument for objecting to the PACE trial. Its conclusions seem to pretend that there aren’t massive questions it hasn’t even begun to answer. If we are to accept it as a basis for treatment, we are forced to accept the massive under-reporting of harms from CBT/GET. We’re forced to ignore sizeable patient surveys and accounts reporting both inefficacy and harm. We’re forced to ignore evidence from research that irrefutably contradicts it. I think it is intellectually insulting to call yourself an ME/CFS expert and try to defend the conclusions of such a trial. Even if the data and its interpretation wasn’t in question, it could never have been more than a very small step in a field of research that is one of the worst funded per patient the world over.
What I have just mentioned in this piece is merely the tip of the iceberg. In my opinion the ME/CFS patient community was addressed in far too little detail in the Nature article, so I would invite Bishop & Lewandowsky to take the time and allow those more erudite than myself in the community to assemble the deluge of research and references that not only, utterly contradict the findings of the PACE trial, but raise deep questions about its design and significance amongst the literature on MECFS. I think it’s important they do so because what they’re citing as an example of the problems with open data, might actually have more to do with it being closed and not subject to enough debate and analysis.
As a person and not a scientist (I don’t think taking an interest makes me a scientist, but I’m certainly not anti-science), I have beliefs, I have self interests and that undoubtedly will cloud my objectivity. The anger and emotion of my situation can and will be misplaced at times. My logic wont always be sound and my credentials are minimal. Sometimes though, in science the problems are so bad that a person can see them. Sometimes an objection isn’t a response to an inconvenient challenge. Based on Stephan Lewandowsky’s research history I could argue that he objects to open data based on self-interest. On that basis and by the statements made in your piece, it would behove him to recuse himself from the debate on open data. But I wouldn’t really want that. A self-interested individual can after all, add to a debate. A informed debate is comprised of arguments from different positions and perspectives, from the flawed to the near impeccable. Impeccable arguments can only begin to emerge from the collection and refinement of flawed arguments. Though that is something of an argument for open data, when you think about it.