CFS-ME Registry

Good day ME Advocacy members, My belief is that ME/CFS/FM will be treatable in the near future. There are simply too many people suffering with this illness for it to go on like this. More funding for research can make a difference. One of the cornerstones of research is being able to find suitable candidates for their studies. It’s been far too long that we haven’t had a global registry for CFS/ME/FM. I am reaching out to you regarding a new initiative. I’ve started that global registry: http://www.cfsme-registry.info and I invite you and your members to sign up (zero fees). I am actively contacting CFS/ME/FM associations and support groups, researchers and doctors now. If you’d like to discuss anything, feel free to email me: Michael.Lapenna@cfsme-registry.info. I hope you can inform anyone you know who has CFS/ME. Thank you and take care.


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  • commented 2018-01-05 09:46:44 -0500
    Linda, if you think my initiative is impractical, how about explaining your reasons why? Without explanation, clicking a checked labelled “Impractical” doesn’t help anybody. The front page of my website is informational – there is no need for it to be a secure URL. Once a member logs in, all communications are secure (https).
  • commented 2018-01-01 19:42:23 -0500
    Really really want something like this but why isn’t it a secure location?
  • tagged this with Impractical 2018-01-01 19:42:23 -0500
  • published this page in Suggestion Box 2017-06-05 06:22:36 -0400