Firstly, I would never seek to diminish anyone’s experiences of illness. Things are bad enough for us as it is.
Some of us are motivated in different ways. Megan at My Chronic Life Journey is passionate about increasing understanding and has begun working on the Foggy Frog and the Pain Gang campaign. Some people like, Leigh Hatcher, write a book and start a forum. Others make submissions and lobby the IOM in the US, which you may have seen on Twitter if you follow issues. We need all these things.
I’ve written about how I’ve read every book in the library, and requested the library buy more (like Toni Bernhard‘s great books). I’ve accessed the online library of Australia’s largest research institute and read dozens of scientific papers. I follow the debate on Twitter and I’ve scoured all the same pages of the internet as you.
I want to solve this. Well, I want scientists to solve this. It seems bizarre to me that we sequenced the human genome more than a decade ago, that 45 years ago we conquered space travel and landed on the moon, that we can clone sheep and pigs…Higgs bosun, Mars rover, edit genetic code, make organs from stem cells…the list of achievements is huge and impressive. But we still suffer in our homes (at best, some of us have to move back into our parents’ homes or even into hospices) because there is not the scientific or political impetus to push it.
I might be wrong, but I feel like one of the most important things for me is fighting for a solution. I don’t just want my legal case to be successful because I can prove that an enterovirus caused my disease. I want my health back and I want people to be helped and I want to find solutions for all the other young women, middle aged women, everyone who has ME so that no one else has to go through this.
You’ve probably seen the news story about how the US spend six times as much on researching male pattern baldness as they do CFS. And they struggle even more than other English-speaking countries with differentiating between ME and CFS.
I wrote to my member of parliament to ask about Australia’s funding. She took four months to write back and didn’t even name a figure. It says that the body who grants funding as received 24 applications related to fibromyalgia, CFS and ME in the last 14 years and they get 4000 applications each year, and suggested I contact ‘CFS Australia’ and ‘Fibromyalgia’ (no such groups).
When I was diagnosed I received a list of names – all from the same specialist. Post viral fatigue, M.E., myalgic encephalomyelitis, fibromyalgia, CFS. No wonder I was confused for so long.
We know so much about myalgic encephalomyelitis and its triggers, why can’t it be separated out from the CFS label and looked into? This should help both people with ME and who’ve been given the CFS diagnosis as the treatment will either help them or drive medical professionals to dig a little deeper and find the cause. For example, a friend was given the CFS diagnosis and just expected to live with it. Her mother’s research found it was rickettsia but what would have happened if her mother hadn’t persisted and she’d continued to be so ill?
I was kicked out of a facebook support group today for posing the question, ‘should ME be looked at separately from CFS?’ and posting a link to the Hummingbird’s Foundation website. I don’t mean to upset anyone who suffers from debilitating fatigue, dizziness, pain, fog, IBS, allodynia and intolerances, it sucks, which is why I want to change things.
I’m interested in what you think? Am I wrong? Am I right? How should I go about this?