Today I attended a medical seminar run by ME/CFS Australia (Vic, Tas, NT). It was fantastic! For 5+hours I hung off every word that was said – and as someone with chronic illnesses that interferes with my concentrations levels…that’s saying something!
Obviously I can’t write out the complete running of the day, but here are my key takeaways from the day:
There are medical professionals and researchers out there who believe in us! I know it’s hard to believe…but it’s true! I saw it with my own eyes today.
Don’t settle with “You have ME/CFS. There’s no cure. Goodbye”. I’m not saying that ME/CFS doesn’t exist – we know that it does. I’m not saying that there is a cure. But given that each of us with ME/CFS presents with different symptoms, we shouldn’t be taking the diagnosis, going home and giving up hope. A GOOD medical professional will dig deeper, break down ALL of your symptoms including family history. ME/CFS is a multi-system disorder, meaning multiple systems need to be treated together in order for any improvement. Since my diagnosis I’ve been on the hunt for a better answer. I don’t doubt that I have ME/CFS, but it’s an umbrella diagnosis. I want to know the specifics. I want to treat the specifics.
Lactic acid bacteria in the gut has a correlation with mood. Also, people with ME/CFS have been shown to have low e.coli in their poop. A lot of this kind of went over my head a bit, but what I got from it was we should be having a gut profile done to understand how our system is working. Also, if you have IBS type symptoms and anxiety/mood disorder type symptoms – they could be related. Oh and antibiotics can help with your sleep.
Something about our cells and blood. Ooh and killer cells. They do something and they’re different in everyone. It all made sense during the talk, but my non-science brain is not able to retain and translate it very well.
Note to self: Don’t ever attempt to be a science teacher.
We should read our superannuation statements. Make note of what the payouts and insurance are. Could be important.
I know this is a topic often raised in various chronic illness groups…turns out that no, we are NOT legally obliged to tell current or prospective employers that we have an illness. Unless the illness could be an OH&S issue, it’s nobody’s business if we’re sick or not. When filling in the superannuation insurance forms, we won’t be asked about these particular conditions. Only if you’re applying for income protection privately will you be asked about ME/CFS.
Ehlers-Danlos Syndrome and POTS could be related! I was starting to think I had 5-6 chronic illnesses, but as it turns out it could all be related! EDS involves elasticity and POTS involves lack of blood flow to the brain. So…if your veins are stretchy then the blood isn’t pushed back up to your brain as efficiently as if your veins aren’t stretchy and actually did their job properly.
Anyway…that’s what I learnt. It probably hasn’t translated quite so well here, but I really did get a lot out of today.