Does anyone know anything about the ‘Patients like me’ website and have any in this community attempted to shape this potential resource into something more purposeful for us, is that even possible?` The bulk of information I could find here on PR was posted in an old thread from 2010. http://forums.phoenixrising.me/index.php?threads/patientslikeme-www-patientslikeme-com.2511/ A slightly more recent mention dates back to 2012 where someone says they will petition to have ME/CFS included on the site which seems to have been successful. http://forums.phoenixrising.me/index.php?threads/patients-like-me.17388/ Today, on the conditions page ‘CFS’ is listed under 'Neurological and Brain'. When you go into CFS it is called ME/CFS and SEID is mentioned. There follows a list of ‘common symptoms reported by people with ME/CFS’ which can be best described as a meaningless assembly of vagueness. It bears no relation to the CCC or ICC and mention of PEM, OI or other common, defining and or debilitating symptoms are likewise avoided. https://www.patientslikeme.com/conditions/27 My curiosity is piqued, it's seems that it might be a very useful tool. I am wondering why the community has seemingly not used and informed it more over the years? Have there been stumbling blocks, are ‘Patients like Me’ reluctant to engage in a more meaningful way? I don’t even know how it works so perhaps I am not asking the right questions. I wonder does anyone know more?