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TOPIC: CFS/ME Registry

CFS/ME Registry 6 years 1 week ago #1

  • mlapenna
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Good day members.
The research and studies around CFS/ME is certainly ramping up. It seems gut bacteria is believed to be involved in the illness. And I think it is generally accepted that it could still be some time before consistent treatment is established.
As a volunteer effort, I have established a website (www.cfsme-registry.info) to create a global community of people suffering from CFS/ME.
My goal is to link researchers with these members, for studies, trials and eventually treatment. Finding suitable candidates for studies is expensive and time consuming. I hope to shorten that cycle.
For the website, there are no fees, no advertising and no compensation for me. All member information is private and secure.
My role in the CFS/ME ecosystem is small but I hope it will provide a little help. There’s too many people suffering from this debilitating disease. I have a family member who has CFS/ME and has been suffering for over 10 years.
If you feel this effort is worthwhile, please visit the website. If there is anything you want to ask beforehand, I am happy to answer: michael.lapenna @ cfsme-registry.info.
Thank you.
Mike Lapenna
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