National Patient Registry
If you have FM or CFS/ME, then please help move the science forward. Be willing to look at research proposals and then decide if you wish to participate. With one million patients in Canada, we should be able to do large studies easily. Through this Registry we can completely cut the cost of recruitment for researchers.
The Patient Registry data is received securely online, then moved offline to disk. When a researcher contacts FM-CFS Canada seeking participants, we’ll contact you and let you decide if you wish to contact them. The researcher does not get your information from us. You provide what you wish when you contact the researcher. We do not give away or sell or share your data. This central Patient Registry will be a free and easy service for researchers to use, just as is being done for other chronic illnesses with their Patient Registries. More than 1500 people are registered already. Let’s aim for tens of thousands.
Educational Materials: The best we can find.
Members of our Medical Advisory Committee reviewed more than 100 of the best pieces of information and advice we could find. The sources were nearly always a respected physician, researcher, organisation, or a patient.
FM-CFS Canada is working to create new materials, educational guides for practitioners in different health fields. The two new short versions of the Diagnosis and Treatment Protocols for FMS & ME/CFS, will be accompanied by a series of practical tools for practitioners. FM-CFS Canada also has regular contributors, providing research, online answers to questions, and content suggestions, with our thanks. The collection now includes a video and podcast, with more to come.
FM-CFS Canada, with the help of volunteer lawyers and Pro Bono law students, has been researching FM & ME/CFS cases to see what does and doesn’t work.
You are welcome to share this research with your lawyer, to give them the benefit of the long hours of research conducted by the students. This saves them the research and saves you money. The research could suggest a winning strategy. Pro Bono students will continue to add to the collection. We hope together we can win more cases! We would welcome hearing from you.
How You can help? Donate!
Online through CanadaHelps.org gets you a tax receipt immediately.