Clinical trials from the patient perspective: Survey in an Online Patient community Feb 27 2017

[*GG*]

Conclusions
Most patients are willing to enroll yet very few are invited. When they do, trial participation is often burdensome, but patients are willing to help improve their design. Researchers should let patients help design better trials to overcome recruitment and retention issues and hasten the development of new medicines.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5327530/

GG

 

[denmarkk]

That's why I didn't join the current post-infectious ME/CFS study at the NIH, even though I qualify and live 45 minutes away. The number of tests in such a short time frame scared me away. I was worried about the short and long term repercussions on my illness by being taxed in such a grueling way.

 

[RogerBlack]

Meaning of course, fun biases towards those with carers (availability of help may correlate in both ways with severity and disease course), as well as lack of severe patients, and probably dropouts of those who are currently in PEM, as well as no severe patients.
Sigh.
This stuff is hard to study in a sane way, especially when you're unable to (for example) turn up in someones lounge to do tests.