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dfelice6181

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2 reviews

Review for Open Medicine Foundation, Agoura Hills, CA, USA

Rating: 5 stars  

My name is Diane and I was diagnosed with ME/CFS 28 years ago. Because of the poor advice I received from physicians (including Mayo Clinic) that I was just deconditioned from a bad virus and should go back to work and do graduated exercises, I went from having a moderate case of CFS to very severe. I could no longer work at all and my parents had to take care of me as I was bed ridden for 20 years. Then they both became ill with lung cancer, and I had to somehow take care of them. I was never able to get married or have children because I was never able to improve- there is absolutely no treatment or cure for ME/CFS. We're just told it's all in our head and go home and deal with it. I still am mostly housebound and unable to work. But there are caring researchers out there who are finding that it is a true physiological disease and NEEDS proper funding for research. Open Medicine Foundation is the ONLY hope people with ME have to get a proper diagnosis and treatment, as they encourage several research groups from around the country to collaborate and share information (rather than competing for funding) so that research for a cure can be found more quickly!!

Role:  General Member of the Public
 

Review for Open Medicine Foundation, Agoura Hills, CA, USA

Rating: 5 stars  

I am so happy and encouraged to learn about Open Medicine Foundation- it's such an inspired idea which gives me great hope in speeding the effort to find a cause/cure for ME/CFS. I have battled a severe form of CFS for 27 years, along with my mom who was also diagnosed with it. Thank you for all you are doing on our behalf!

Role:  General Member of the Public