People with ME are an incredibly science-literate patient population, even if that isn’t by choice: it’s the gaps in research and clinical care that have made us experts by necessity. Many of us eagerly participate in studies and engage in science discussions online. We regularly present our clinicians with new information! We understand better than most that the key to diagnostics and treatments for people with ME is research funding and clinical education guided by the input of real patients.
Being an advocate means wearing a lot of hats, and the work I do is varied. However, I find I am so often proudest of our scientific and clinical work: from our enrolling studies page, to the grants work I do behind the scenes, to our live tweets of scientific conferences and participation in the Collaborative Research Centers, to our research review, now updated up to 2019. I read 115+ new papers in order to determine what should be incorporated into the updated review!
Given the dark history of ME, there is very little that is more important than science that is up-to-date, verifiable, and in language that everyone can understand. There is little more important than being able to advise our Parliamentary and Congressional groups what is most evidenced versus what is most often repeated aloud. Being able to advise folks at #MEAction and beyond — and being able to counter false narratives about ME with solid science — is, in great part, what brought me to #MEAction and why I believe this role is so important. And I can’t do it without you.
If you find this work of value, please donate and share our fundraising campaign through social media with a note about why supporting science is meaningful to you.
We are aiming for $100,000 in the US and £10,000 in the UK in the spring. We’re over a third of the way there!
Together, we can strategically use up-to-date research to best advocate for policies and practices that help ensure better research, better care, and a better life for all people with ME and those who love them.