Open UK - Recruiting: Novel Dynamic Proteomics Approaches to Investigate the Systems Level Pathology of ME/CFS

There are some studies taking the bad day/good day approach. E.g. Chris Armstrong in Melbourne is doing one I think. That is a good approach, side stepping the issues with provocation studies.

I think what these particular researchers are doing is mostly ok though. My questions are in line with Bobbler's comment about what monitoring of post-intervention impacts is being done. Researchers and participants in any future studies should have access to some indication of the consequences of what the patients are being asked to do. There should also be substantial funding for patients putting their health the line for this type of study, so, for example, the participant can choose to pay for some home help during the recovery period.

 

Just further on that, I have seen some studies budget to spend tens of thousands of dollars on specialist participant recruitment firms (even while noting that most recruits will come via communication with patient organisations) but offer compensation of up to only a few tens of dollars in transport costs per patient. I know researchers struggle to get funds, but I think the time and effort of participants needs to be honoured more than it usually is.

For example, for a CPET study that I participated in, I had costs of flights, taxis, airport parking, three nights of accommodation, meals away from home, as well as the effort of recovering after, and there was no financial compensation at all. Many patients are willing to sacrifice a lot in order to advance medical knowledge, but researchers should do what they can to reduce the costs of participation, physical, financial and otherwise, and increase the benefits (including by getting patient input throughout the project so that the research is as smart as it can be, and by clearly communicating results).