Theydies and gentlethems…introducing The Rodeo 🤠

A new fortnightly lassoing of info, resources, and recovery tools

My friends, I have had to face the (non-country, unless it’s Johnny or Dolly) music of late and acknowledge that a weekly longish narrative post has been a bit much for me in my fatigued state. I had made some gains with my recovery over the last few months, but I’ve felt my health deteriorating somewhat in the last few weeks, as evidenced by the nosedive my Stability score took around the end of August in the Visible app (our first recommended recovery tool of this post). See for yourself:

Currently, each post takes me about five days to write, edit, format, post, and promote. This is because I can only spend about 30 minutes a day on my computer without suffering consequences to my overall energy levels and an increase in other symptoms like neuropathy (burning/buzzing/cool sensations on the skin of my extremities and face/neck), shortness of breath (so weird that computer work would bring that on, right?), and cloudy thinking/problems concentrating. In a way, this makes sense though when you check out this startling finding highlighted by Hannah Davis with the Patient-Led Research Collaborative:

Oxygenated blood is just not getting to my brain like it used to, nor sticking around for as long as needed. Here’s a line taken directly from my 2-day CPET done last July at Ithaca College that really drives the point home:

Ms. ___’s VO2peak from test 1 was equivalent to the average, inactive 76 year-old female

ouch, that hurts

Here I am despondent over it.

a 76 yo’s oxygenation, but no senior discounts :(

After all, I was 47 last year when I went for the test (44 and physically fit when I got COVID). This has all been very frustrating.

But then I remind myself that this is all part of the recovery journey. This downward trend is just a new piece of information and the smart thing to do would be to put that knowledge to work in order to get back within my energy boundaries.

Before we get to the new plan

I want to extend a heartfelt thank you to all who have been taking the time to read my posts and to like, share, comment, and restack them (Substack’s version of retweeting). A special welcome to Cort Johnson and all the new folks who are joining me here from Health Rising, hands-down the best resource online for all things ME/CFS, fibromyalgia, Long COVID, and other chronic illnesses.

When I started this little venture, I wasn’t sure how many would find these posts useful, enlightening, or enjoyable, but each week I get more and more positive feedback and that has given me the confidence to know I’ve got a good thing going here. You the reader have a lot of content flying at your eyeholes and earballs all day, every day, so I know if you read my little newsletter, you are making a conscious choice to spend your precious time that way and that means the world to me.

(some of you are learning right here for the first time about my obsession with DJ)

I have contemplated dropping down to two posts per month instead of four, but I have been enjoying the reader engagement that has come with putting something out weekly. I have loads of useful, intriguing, or fun info also sailing at my head each week, and I wanted a lowish-energy way to share this with you regularly. Often, I have more than I can fit in the After-party 🥳 section of my posts each week.

And so…

Welcome to The Rodeo 🤠

The Rodeo is a lassoing (too on the nose?) of Long COVID and ME/CFS tidbits, tossed in with other health-related or general interest topics, and delivered to your inboxes every two weeks. I’ll be alternating these posts with my longer narrative posts so there will still be something in your inbox weekly.

this horse is pacing well

Spacing things out this way should give me more recovery time in between posts, since The Rodeo won’t take me nearly as long to curate each week as the longer posts.

If you are not a long hauler but have been enjoying my writing, I do hope you’ll take time to peruse The Rodeo each time. There will be something in it for everyone, including useful information for the masses and bits of my writing along with my usual sprinkling of humor.

And never fear – there will still be an After-party 🥳 section for the fun stuff, including the fan favorite Cat Dump 🐈‍⬛💩, which more than one of you (two 🤭) have asked for by name.

To turn a popular expression on its hide, this IS my first Rodeo, so giddy up!

The Rodeo #1

It’s COVID season again, good people

👉🏽 Brush up on some current guidance: Five Things To Do When You Get COVID

💊 One of the things Dr. McBride mentions in the link above is metformin, which is also mentioned by Dr. Jacob Teitelbaum because it dramatically cuts risk of Long COVID.  When started within the first four days of infection, the diabetes drug cut the risk of developing Long COVID by 63%. That’s staggering, folx! If you can’t get Paxlovid at the start of a COVID infection, ask your doctor about metformin (and perhaps they’d prescribe both? Not sure, but you should ask. Avoid this post-plague plague like The Plague!)

👃🏼 Most at-home COVID tests have had their expiration dates extended. Check the FDA’s site to look up the brand, serial numbers and expiration dates of the ones you may have at home.

Long COVID and ME/CFS

🤔 In Long COVID is an old name for a new syndrome, the writers argue that Long COVID is really just another version of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a neuroimmune condition most often brought on after a virus (but sometimes brought on by trauma or significant life changes/stressors). They talk about how the billion-dollar RECOVER initiative in the U.S. and other research efforts should be building their work off of what is already known about ME/CFS. If you’ve seen this piece of mine, you know I agree.

I am not sure however that I entirely agree with the writers’ premise that Long COVID is “virtually indistinguishable” from ME/CFS though. While my manifestation of LC hews closely to ME/CFS (fatigue, post-exertional malaise, unrefreshing sleep, joint/body aches), I have some symptoms that do not, and I have known several long haulers whose LC did not include fatigue-related symptoms but were primarily dysautonomia, neuropathy, shortness of breath, or cognitive issues. And yet, it has still been moderately to severely disruptive to their lives. I think it is more likely that there is an umbrella of post-viral and neuroimmune disorders and a lot of conditions fall under this leaky, hole-riddled umbrella that’s not doing a very good job at all of keeping any of us dry 🌧️😫.

Long haulers and ME/CFS folx (or those adjacent to them): I’d love to hear your thoughts on this. Do you think Long COVID is essentially just ME/CFS, just maybe a different flavor? Or do you think it’s a separate condition entirely? Please weigh in.

🤓 For anyone interested in learning more about what is currently known about Long COVID symptoms and treatment, I highly recommend checking out Hannah Davis of the Patient-Led Research Collaborative giving this presentation at the Long COVID & Fatiguing Illness Recovery Program Monthly Session in August 2023. The presentation portion runs up to minute 33 or so.

🤕 Connections, Connections - Fibromyalgia, ME/CFS, Photophobia and MIGRAINE! - boy, did this title draw me right in. From 2010-2018, I suffered from chronic migraines, about 20-25 headache days per month. It was brutal. I found a headache specialist who tried everything, until the right combination of things worked for me (changing my diet, getting an IUD, and taking monthly self-injections of Aimovig).

Then, after I got diagnosed with Long COVID and ME/CFS, my infectious disease doctor (a longtime ME/CFS specialist) asked me during an office visit if I had a history of migraines.

“Why yes, yes I do! How’d you know?”

Apparently, the connection that Cort discusses in this Health Rising piece is a known thing.

(She also asked if I had a history of endometriosis. Same answer: “Why yes, yes I do! How’d you know?” If you type “endometriosis” into the Health Rising search bar, you will get a whole bunch of hits. BONKERS).

📰 Solve M.E. just published the first edition of its new newsletter The Solve Chronicle. This edition is chock full of great articles on navigating post-exertional malaise (PEM) and pacing, tracking your symptoms, and workplace accommodations.

💅🏻 Do you have COVID nails? Click on the link to find out the many ways your nails can be affected after you have COVID.

I have had purple/brown splotches on my nails for over three years now. They grow out with the nail and then begin again on different nails. None of the many doctors I’ve seen over these three years has been able to tell me why. My functional medicine doctor believes my particular post-COVID nail issue might be a result of microclots in my blood, a very common occurrence in long haulers.

my purple COVID nails

Miscellany

🕰️ Harrowing and beautiful: my dear friend Jennifer C. Nash wrote My Mother’s Clocks: On Losing Time with Dementia. (Jen’s mom Carolyn was one of my first bosses after I graduated college and she gently coerced Jen and I into forging a friendship, which just hit its 25^th year. I will be forever grateful to Carolyn for the gift of bringing Jen into my life).

🙎🏾‍♀️ Check out

Aubrey Hirsch

’s graphic (the cartoon type) depiction of women’s medical gaslighting, featured in

Roxane Gay

’s The Audacity. Spot on. It’s especially bad for Black women.

A Story About Pain

Stick around…it’s….

🥳 The After-party 🥳

Added joy, tomfoolery, and buffoonery

🏙️

Anne Kadet

is a great storyteller about all things NYC. This was a really fun piece, especially if you have a soft-spot in your heart for NY and/or playgrounds:

Only in NYC: A Home for Retired Playground Animals!

🤦🏽Buffoon of the week: Dr_T_

When Long COVID patients say they have experienced medical gaslighting, BELIEVE THEM. This is from the comments section of an article called This Isn’t COVID’s Final Act on MedPage Today (only medical professionals can comment on their articles, btw, so I’ll have to stick to shaming him here).

Mr. T > Dr. T. I also pity the fool who has the latter as their doc.

🤩 Baldy’s a movie-star(let)! Go watch the movie Theater Camp, streaming now on Hulu. See my Baldy as an extra in the auditorium scenes. He’s the, uhh, bald guy who Ben Platt momentarily sits next to. You can’t miss him.

🐈‍⬛💩 And finally, this week’s Cat Dump is a single photo; maybe the single best cat/human photo I’ve ever taken. So much going on here. Enjoy 😊

from l to r: Baldy, Zira, Birdie, Fritzy

Like what you’re seeing? It would be a big help to me if you please like, subscribe, restack, and/or share.

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