CureME is a new site for listing research news about ME/CFS. Each post will be a stand-alone article, and the aim is to create a free ‘one-stop portal’ for research news about the disease. All you need to sign-up is an email address (read more), and thereafter you can access the list anytime using a password – dead simple.
Social media has some advantages, but one downside is that information can be diffuse – held as a cloud made up of individual raindrops which need to be accessed individually. So, it’s a good idea to bring all the research information on ME/CFS into one place, without extraneous comment. For this reason, CureME can expect to become a major resource over time.
The need for a fresh information portal on ME/CFS was starkly illustrated by the death in January 2016 of Ray Colliton who created and ran the Co-Cure Information Exchange Forum on ME/CFS and fibromyalgia, an international distribution list and website for science and advocacy issues. Ray had developed ME/CFS in 1988 after a successful business career and started Co-Cure in 1993. Thereafter, he owned and managed Co-cure for 21 years, giving his time and energy freely to increase awareness of the illness and the need for research, doing good quietly and without fuss or rancour. In time, Co-Cure became an extremely valuable repository of information for ME/CFS patients, researchers and advocates who came to the site for the most up-to-date developments. Importantly, it accepted all postings, irrespective of the stand they took on particular issues, so long as they were civil to others. In 2014, emerging illness forced Ray to reduce his involvement in Co-Cure, and the resource was deprived of the care of its founder and patron.
We hope that CureME will become a worthy successor. It can only do so, however, if researchers and patients sign up to read the contents and post information to it. Over to you.