CFS-ME Registry (new website)

[Dolphin]

I haven't looked into this website too deeply, but it looks like it might be useful:
https://cfsme-registry.info

About
Because CFS/ME is less visible than most illnesses, we needlessly have so many people suffering, wasting their lives away. I read so many stories about people silently suffering, with pain and fatigue. And I have seen it first hand with my sister who has been suffering for over 20 years. I have been thinking about ways to help, but since I am not a medical doctor nor researcher, my options were limited. So I decided to reach out to leading doctors in the field. I offered to perform data analysis, for free. No takers. By day, I am an information architect – I work with data and databases. Eventually I thought about linking one type of data (CFS/ME sufferers) with another (CFS/ME researchers). Hence this website was born. I hope the data collected will be an essential part in the ecosystem of people and information that will be needed when large scale research and medical trials take place. This is my way of volunteering my time to a global problem.

If you look for me on the internet, you won’t find much on social media like facebook and instagram (although I am getting a little better). The best place to find a little info is here on: LinkedIn.

Mike Lapenna

https://cfsme-registry.info/about

 

[BurnA]

This looks like a decent website.

In a way it's something that could have been incorporated in PR.

 

[*GG*]

So I thought I registered with this website, but I cannot Log in now.

It doesn't offer me a way to see what user name I used, I think I know, but not certain.

GG