Covid Long-Haulers and MECFS, what’s the latest?

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.

2 thoughts on “Covid Long-Haulers and MECFS, what’s the latest?

  1. My Partner is not at all a covid long-hauler. But, I have noticed that his “baseline” for what he’s physically capable of sustaining in exercise, intense mental focus, etc. just isn’t *quite* up to where I’d say it used to be. It’s subtle, but there’s nothing like trying to go do an outdoor activity that he assumed would be no big deal and having him be dizzy and need Gatorade same as me to go, “huh.” We decided to volunteer for a study of “normal” people months after having covid. We’re fine with having our blood drawn and things in the name of maybe helping those who *are* long haulers. From that screening – and just doing some reading based on what the screening questions made me wonder – it seems like even those of us who had mild cases and “recovered” fully lose about 5-10% off what would have been our peak capabilities in a lot of cases. My baseline is sufficiently wonky to begin with that I doubt I could tell if covid changed anything for me, bit it’s “interesting” to see what seem to be some very subtle – but real – ways where my Partner now more “gets” brain fog, etc. because it took him awhile to be totally “okay” compared to pre-covid. We both met the screening criteria to be in a local study, but whether we end up participating I guess is just based now on whether we are randomized into it for our respective zip codes and demographic profiles. If we do end up participating, I’ll probably write a post at some point. But, yeah, here’s hoping studies of both those who recovered from covid “successfully” help those who didn’t- and other spoonies!

    Liked by 1 person

    1. It seems it can really take hold if it wants, and if it’s successful it can cause widespread havoc on the organ of its choosing. I read that the shape of the crown spikes are unique and give it extra grip to cells. It’s a smart one, that’s for certain. I’ve heard men are hit harder. Hopefully in time your partner will bounce fully back. It’s good to see you made it through okay. Hopefully the immunity will keep it a way from you two for good! The three month period has me concerned that we’re heading for a brutal winter because what good is worrying without catastrophizing. 🤷🏻‍♀️ The optimist tells me we are on the upswing so trying to stick with that. Looking forward to reading your post. They come through as emails and I read them there even if I don’t always interact by clicking into WordPress. This year has been really rough so I’ve been awful at blog interactions. And yes! Here’s hoping research is successful and treatment is too, all around!


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