Hello, thank you for stopping in today! Let’s see, well since last Tuesday my biggest news is that last Saturday I experienced the worst case of vertigo to date, and I’m still trying to balance things out. Vertigo is what happens when I over do it, or I try a supplement that my body doesn’t like, or seemingly whenever it just wants to throw a fit. Before you form an opinion, please know I haven’t ever expected to get vertigo from things like vitamins, toxins, essential oils, mint, and yet… over the past six years that’s become my reality. A doctor once told me that the mind is a powerful thing and if I think I’m going to get vertigo, then I will. Umm… first of all if my mind was that powerful I’d have healed myself with wishful thinking a long time ago, and secondly, I never thought I was going to get vertigo from any of those things, but thanks doc. Anyhoo… enough oversharing out of me! This week I’d like to share some recent MECFS Open Medicine Foundation research news. Truthfully, I’m wiped out from trying to stay balanced, even while sitting still, so I thought it’d fun to share someone else’s wins, which I think are pretty darn exciting, and hopefully you will find them interesting too.
The first article below discusses a recent research project aimed at discovering a potential link between long Covid (people who aren’t fully recovering are referring to themselves as long or long haulers) and MECFS. (I think you have to sign up for the free medscape account to read this article.)
“We’re taking advantage of this horrible situation, hoping to understand how a serious viral infection might lead to ME/CFS,” said lead investigator Ronald Tompkins, MD, ScD, chief medical officer at OMF and a faculty member at Harvard Medical School. The results, he said, “might give us insight into potential drug targets or biomarkers useful for prevention and treatment strategies.”
The second bit of news below discusses the first-ever virtual Interagency ME/CFS Working Group Meeting. This was the first time that representatives of multiple federal research programs met collectively with the three leading ME/CFS focused nonprofits: OMF, Solve ME/CFS Initiative, and #MEAction. The meeting was hosted by the NIH and the CDC, and representatives of federal research programs included:
- Three branches of the NIH
- Three branches of the CDC including the Domestic COVID Response Program
- Department of Defense: CDMRPVeterans
- Administration: Gulf War Research Program Department of Education: Office of Special Education Programs
- Social Security Disability Office
News like this is why I continue to have hope that someday soon there will be a test, a treatment, a cure for all of us with a variety of neuroimmune diseases. Thanks for dropping in today! Hoping your day is going best as possible. 🌼 A few more of my doodles below.