I am one week into my European tour of Hope. I have been to the Isle of Man, Ireland and Northern Ireland. This truly has been a fantastic experience meeting passionate advocates, caring people, desperate parents, and wonderful, determined patients. With so many people showing up to the talks in these countries, I can’t possibly imagine how many people truly suffer and are invisible. Many children are so very sick with no resources to help.
The local organizers of my visits are all heroes to me, “fighter parents/patients”. Despite their personal burden they were amazingly warm, organized and efficient. Once I was there, we all learned together that we can make a difference even with small targeted events. We need to make certain we involve the local media and organize in depth talks with government and healthcare officials. We had several interesting meetings in that regard including radio interviews. As a result of the Parliament meeting, the Isle of Man government has already agreed to set up additional ME / CFS services for both adults and children. We all felt that my visit made a big difference in elevating the need for all of this and now they are moving forward.
From these visits, I realize what a big responsibility OMF, and all of us, have not only in finding a cure fast for desperate and very sick people throughout the world but also in raising awareness for general public, the media, government and healthcare professionals. ME / CFS is truly an international problem with the same horrific stories everywhere I visit. So many patients have their lives put on hold with the hope of research bringing treatments to help them. We need to step this up and move as fast as we can to find a cure and then spend our time educating physicians and getting services for patients.