I wish people without M.E would realise that 70% of life for us with M.E is just too much.
M.E isn’t about being lazy, it isn’t about our diet and it certainly isn’t in our heads. These are all ideas that have been banned about for years that have no scientific or medical proof but people still believe it.
I often wish that those medical professionals who for years told me I was “just depressed” could live in my shoes, just for a few hours, on one of my bad days. I always say I would never wish this on anyone and that is true, but I do feel that if those who doubt could just experience it for a few hours than what a difference it would make. We might finally get taken seriously, have some proper medical research done and not get judged so harshly.
I was chatting to a guy who lives in Australia who has had M.E now for 2 years. He has two teenage daughters who’s lives he is missing out on. He felt that the “treatment plan” his doctor was giving him was only making everything worse. He and his wife made the decision to send him to a Chronic fatigue treatment retreat. It is of course costly but here he has been receiving the correct treatments, has been helped to find out which foods his body needs and which he doesn’t, they have him taking clean supplements and they plan in lots and lots of rest. In the 6 weeks he has been there his health has improved 2 fold and he finally can spend time with daughters again without it causing him to majorly crash.
What I want to know is how these CFS centres who have a proven record of helping people manage, cope with and eventually beat M.E are not taken seriously by our NHS’s. The only “treatment plan” that is offered to those of us with M.E is called graded exercise which is as useful as telling someone with a broken back to just “walk it off”.
I’d love to see more research done into helpful treatments, have GP’s given the correct information that will lead to them giving the proper support to their patients. I only wish I knew what I could do that would make the people who can get this done realise just how much M.E patients would benefit. It could changes lives and get us back to how we all want to be, healthy.