Announcement
Introducing Mike LaPenna
Mike has a sister who suffers from ME and has seen first-hand what the illness does to a person. He wanted to help and decided to start a ME-CFS Registry to help people be aware of research studies who are looking for people to take part on their studies.
Please find below links for answers to your questions and concerns.
CFS-ME Registry
MISSION
It is the mission of CFS-ME Registry to create the largest community of people inflicted with this illness. The purpose is to link researchers and doctors with our community. At this site, you won’t see much in the way of CFS/ME/FM definitions or news – there are many good websites that handle these areas. This is not a general information site but rather a very specific initiative to build a registry. Maybe over time the mission will expand once we’ve reached a critical mass! Thank you for your interest. Please pass on the word to fellow sufferers, researchers, doctors and support groups.
Frequently Asked Questions
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ABOUT Mike LaPenna and
HOW Did The Registry Come About and Why?
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.
