Split from The course of the illness for ME patients in Norway, 2021, Schei and Angelsen The potential effect of sample biases on DecodeME Summary: there is some evidence that this could be a problem, but is not clear how big a problem and it may be possible to adjust for possible biases. IMPORTANT these are very much my own views and this is not an official DecodeME response. this is an important point and there is some evidence to back it up. This new study in Nature Medicine finds genetically biased participation rates both for the UK biobank and the Avon mother and child longitudinal cohort. Genetic differences linked to higher intelligence and more time in education led to higher levels of up participation. High levels of body fat, and risk of Alzheimer's and schizophrenia, for instance, reduced participation. The affects are generally quite modest, but could throw up spurious answers and the paper recommends trying to correct for these factors. What isn't clear is how relevant this research is to DecodeME. In the case of both the biobank and the Avon cohort, people had already been recruited into large studies and the new study was ]measuring the effect of bias on people who either took part in additional activity, such as a mental health questionnaire or completed follow-up activity. For DecodeME, we need to understand the risk of bias when recruiting from the public, primarily through social media and PR. And I'm not aware of any research that looks at this. The keen volunteer issue. Normally, you would expect a low response rate to adverts or PR stoires, and that could lead to a "keen volunteer" issue: but there is some evidence that we are going way beyond keen volunteers. Not least because we were offering people who have no treatments and who are often disbelieved about their illness, the chance to take part in a study that could find answers. We have around 25,000 people already signing up to indicate their interest in the study, which I think goes way beyond any previous participation rate for an ME project in the UK. And response to a single new story with a link back to the decodeme website was extraordinary, again suggesting huge interest. More details in the quote box below. What proportion of patients might DecodeME recruit? As @Jonathan Edwards points out, a lot depends on what proportion of all UK patients join the study, and he starts with an assumption of 120k patients. My guesstimate (not an offical DecodeME one): 67k patients in the UK with a diagnosis and meeting our criteria. Allowing for inevitable losses due to some people, not consenting, not complete a questionnaire or not returning the spit kit, we would need half of these patients to start the process in order to end up with 20,000 participants. Warning! There are a lot of assumptions in this. IDetails in the quote box.
I would have thought the relatively low effort involved in spitting in a tube and sending it off would go a long way to work against participation bias. It's interesting to see the problem being identified with the UK biobank, which presumably also has a low effort requirement. It's interesting to think about what groups of people with ME/CFS might be excluded/exclude themselves from the DecodeME study, and how that might be prevented. If it is a problem with a 'spit and send' sample, then how much more of a problem must participation bias be in ME/CFS studies where people have to risk PEM (especially in studies with an exercise component)? There must surely be participation biases also where many of the target recruitment population might surmise (from the study description or the names of the researchers involved) that a study is aiming to show that faulty personality traits, behaviours or past traumas cause ME/CFS, and therefore either actively avoid or support it.
N=1 perspective but I rarely volunteer. Partly due to the effort involved because I am very cautious about anyone who might want to write to my GP and thus add something to my medical records - note the GWAS allows you to deny access to medical records. Partly deep suspicion and scepticism born of people who seem to be acting in good faith but the reality is quite different. I remember all pro PACE arguments. I can see that participation bias could be a problem but we are also a fairly unique patient community in that much of the research done in the past few decades has done us harm. That may make much of the longer term ill less likely to participate without careful consideration. There might also be an element of "voting with our feet" & demonstrating support for what is seen as honest, good quality research while avoiding poor quality studies or studies run by those with a history of outcome switching etc. For example the blocking of the proposed genetic study by Davies & Crawley but the endorsement of DecodeME. As usual, when it comes to ME, nothing is straightforward!
