A charter to improve ME/CFS research

Emphasis on PEM is also important. That means designing studies that measure after exertion, or symptoms over time, or before and after exertion, or make a comparison between PEM and non-PEM participants. This seems to make it easier to find abnormalities and those that are relevant to PEM, which is consistently ranked as one of the biggest problems for patients.

 

I am half remembering from somewhere a useful wording that indicated the need for patient involvement in planning but how to avoid a tame user group or charity with close links to the researcher(s). It was something about using a national charity or several charities/groups to ensure a voice representing the broader patient perspective.

I thought when I read it that was a useful wording, but then completely forgot what or where. Could it have been in discussion here related to the Norwegian LP research?

 

Is the issue that any research needs to involve some evaluation of subjects total activity level during the research process?

This is in relation to both meaningful outcome measures and selection bias. Participation in research has energy costs such that we end up with the act of measuring potentially distorting what is being measured. Further only seeing subjects in clinical settings is in effect a source of selection bias as only mild and moderately impaired patient will be able to participate.

 

Totally agree with this. Especially important that a trial's database be designed with this as one of its primary requirements at inception, then it will be no big deal to achieve in practice. The requirement for this should be part of the protocol I would have thought, so that a trial cannot get past first base unless taken fully onboard.

 

Yes. Where the hypothesis presumes a psychological reason for that condition, it must not be assumed there is no physiological reason unless already previously positively proven independently with high confident that there is no physiological reason.

The purpose of the trial is to assess the viability of its hypothesis, so the trial's methodology must not presume the validity of its own hypothesis in pursuance of proving its hypothesis! e.g. PACE hypothesis based on psychological shortcomings being the reason physical deconditioning not reversed. Yet during the trial if physical symptoms not improved, or worsened, attributing this as failure to overcome psychological shortcomings, totally ignoring possibility of real physical implications.