The Antidote #2: medical injustices, the cell danger response, vaccine injuries, and more
Your fortnightly roundup of info, resources, and recovery tools
Welcome to The Antidote, the biweekly roundup post from The Tonic that is filled to the brim with goodies.
If you’re new here, you should know that my posting schedule is generally once a week on Saturdays or Sundays, and I alternate between a long form narrative post and a roundup post, so as to get more resources out to you and also to manage my own energy levels (often referred to as spoons). Occasionally I post more than once a week; it depends on the goings-on that week.
Wish list shout outs!
In last week’s post, I announced my new Amazon wish list where folks can support my efforts here in lieu of paid subscriptions, which could jeopardize my disability benefits. A big Tonic THANK YOU to Sandra, Teri A., Paula S., Rachel B., and an anonymous donor for your generous gifts!
Here’s the spiel if anyone is curious or interested:
The Tonic is free to read - Amy is so happy you’re here! There is no paid subscription option here like with other Substack newsletters. However, if you are valuing the experience and are able, please consider a show of support by sending a gift of health, wellness, or joy from this Amazon wish list. Anyone who does gets a 📢 in an upcoming post. Thank you!
So, good people, how has your week gone? I’d love to hear. And please don’t feel like you have to have long COVID or ME/CFS to respond. We’re all on a continuum of wellness. I’m especially here for anything ridiculous or silly that happened. Embarrass yourself? Someone else? Do tell:
My week was good, on the whole. I had my second SSDI (government disability in the U.S.) medical appointment on Thursday. Baldy and I waited an hour and a half, only to receive the quickest, lamest medical exam I’ve ever had in my life, lasting precisely three and a half minutes.
I went into this one in my mobility chair and also with a new attitude; I would not be sweating this exam like I did the first one. What would be the point? Besides, the truth of this long hauler life is worse than any fiction, so whether the doc chooses to believe me or not:
Now for the second installation of The Antidote…
Podcasts
⚡ I shared this today in The Tonic chat on Substack, but I promised to share it again here. Hot off the presses, this is Ari Whitten’s podcast where he interviews the elusive researcher Dr. Robert Naviaux about the cell danger response (CDR). In lay person’s terms, the CDR is the idea that in a wide array of chronic illnesses, our cells are spending their efforts fighting off danger (whether an active danger, such as a virus, bacteria, or injury, or the inflammation and downstream effects after a stressor or active danger). Instead of spending their efforts on healing and producing energy, cells get stuck in danger fighting mode. Learn more by watching:
💉 Everyone loves Raelan Agle (if you don’t, you should; she recovered from ME/CFS and now interviews folks who have also recovered from that and long COVID). She’s not pulling any punches here, and thank fucking goodness. It’s about time the world knows the truth about the large number of vaccine-injured long haulers that exist (both of my in-laws included). As you’ve heard me say before, I am not anti-vax, I’m pro-choice on these matters. But every long COVID webinar I’m on is made up of at least 30-40% who became long haulers because of the C-19 vaccine, and they have been silenced and ignored by the government, the media, and the medical establishment for too long.
Research studies (to read and to participate in)
🦠 Excellent overview of mechanisms and outcomes in long COVID: The long-term health outcomes, pathophysiological mechanisms and multidisciplinary management of long COVID. Here are a few helpful figures from the article:
🧠 Folks in the northeast U.S., check out this flyer calling for long COVID research subjects:
🧪 Folks with ME/CFS within 50 miles of NYC: Dr. David Putrino at Mt. Sinai and Dr. Akiko Iwasaki at Yale have added an ME/CFS cohort to their study titled "Identifying the immunological signatures associated with post-acute COVID-19 syndrome". They are seeking participants who were diagnosed (or had a suspected diagnosis) with ME/CFS before 2020 and healthy controls. If you are interested in participating, please contact Mackenzie Doerstling at PRcovid@MountSinai.org.
Substack posts
Some fantastic posts on Substack this week:
There’s a new voice in the long COVID Substackosphere, with beautiful and haunting writing:
Frontline-worker trauma during the pandemic has been very real; compounded in this tale by being a Black woman during the height of the 2020 murders of Black folx and ensuing protests, and also by developing long COVID. Check out this important story:
- with yet another post you must see about how she repaired her mitochondria to recover from long COVID:
Webinars
👉🏼 The National Institute of Neurological Disorders and Stroke (NINDS) at NIH is holding a series of webinars to explore the current state of research on ME/CFS, discuss knowledge gaps, and suggest future research opportunities.
The next one is on Chronic Infections and will take place on Thursday, November 30th from 11:00 AM to 3:00 PM (ET). Hear updates from Dr. Michael Peluso, Dr. Maureen Hanson, Dr. Anthony Komaroff, and Prof. Simon Carding. The webinar is open to the public and will provide the opportunity to ask questions and make comments. Register here.
Also mark your calendar for December 8th when Dr. Paul Hwang will present his groundbreaking research on a protein that disrupts mitochondrial functioning and is found in ME/CFS patients. Register for the December 8th webinar here.
Dr. Beth Pollack at MIT will be presenting on Less Studied Pathologies at the January 5th webinar. Register for January 5th here.
👉🏼 CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call, with updates from the CDC as well as two presentations: Understanding Infectious Origin of ME/CFS through the Recent Pandemic by Bhupesh K Prusty, PhD of the University of Würzburg, Germany, and Endogenous Retroviruses and ME/CFS by Dawei Li, PhD of the Texas Tech University Health Sciences Center. December 18, 3pm EST. J
Join Zoom here: https://cdc.zoomgov.com/j/1603213189?pwd=S2ZydmVscVkxcXp5UEZiRERZMVNTZz09
TELEPHONE: 1-669-254-5252 or 1-646-964-1167
MEETING ID: 160 321 3189
PASSCODE: 85624358
International numbers available: https://cdc.zoomgov.com/u/abkdpV7F6D
Miscellany
🥴 Probably no surprises here, but this piece shows that poverty and Long COVID go together.
💓 Pulse oximeters’ inaccuracies in darker-skinned people require urgent action, AGs tell FDA. Pulse ox’s work by sending light through skin to measure oxygen levels. At my worst, my pulse ox would read in the 80s (a normal reading is 95-100).
But I have translucent skin. The danger here for darker-skinned folks is that they may get a falsely high reading and delay seeking emergency medical treatment, risking worse health outcomes as a result.
Incidentally, a Black colleague once clued me in to how the light sensors that turn on water faucets and other functions in bathrooms often don’t register for Black folx. Read one woman’s frustrations with not being able to get these basic human needs met. Technology in 2023 can and needs to do much better than this.
🩺 I was intrigued by this opinion piece in Stat, particularly by the title: Many Americans receive too much health care. That may finally be changing. I thought, “too much healthcare? We’re always reading about how people lack access to healthcare.” Well, lo and behold, by “healthcare,” they mostly mean prescribed medications and surgeries. The choice of the word “healthcare” as a stand-in for what they really mean (treatment) is very telling; it aligns with the Western medicine approach of throwing drugs at patients or cracking them open whenever there’s a problem detected.
👉🏼 Content warning: suicide. Adult patients affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are at an increased risk of death by suicide. For many, their lives are completely upended by the disease, and many have suffered for decades with no effective treatments. This article may have some helpful tools for identifying and managing suicidality for folx with ME/CFS. Helpful for those with long COVID as well.
🧗🏾 For those of us here who have been erroneously advised by lay people AND doctors to “just get more exercise,” this one might resonate with you: I Have Rheumatoid Arthritis and Life is My Exercise
🧘🏾 Here’s a free Soothing Comfort meditation, along with other helpful resources (particularly for folx in Canada): Free Resources for ME/CFS and ES. (In 2020-21, I took Dr. Stein’s online Pathways to Improvement course, where I first learned about ME/CFS and pacing after I received the diagnosis six months into my long COVID illness).
Now stick around for…
🥳 The After-party 🥳
Added resources, joy, tomfoolery, and buffoonery
🙏🏽 Thanksgiving is coming soon in the U.S. Here's How to Host a Stress-Free Friendsgiving. Also, here’s a list of The 21 Best Thanksgiving Movies to Stream Right Now. Please consider letting the turkey live this year, my friends 😔
🤓 So many colleges and universities have had religious studies departments for ages. Here’s a new Secular Studies department. EXCELLENT! A win for students interested in learning about freethought.
🏊🏼♀️ Winners of the week: Did you see the movie Nyad on Netflix, about the legendary open water long distance swimmer Diana Nyad and her awesome coach/friend Bonnie Stoll? We saw it earlier in the week. I was really looking forward to it, and it was pretty good! This week’s winners are Annette Bening, who must have trained like a beast, and Jodie Foster, who was awesome and also got in amazing shape for the movie. But here’s a secret: the book is even better (IMHO). Definitely check it out:
And also check out this great post about the movie:
🤦🏼♀️ Buffoon of the week: This one’s gross - Michael Costello, a designer who has worked with Beyoncé, Jennifer Lopez, and Celine Dion, posted a photo to his Instagram from a recent Los Angeles fashion show. The photo depicts a Taiwanese-American model named Shereen Wu in the slinky black ballgown that she walked the runway in – but her face was changed, made to appear as if she is a white woman (with that creepy AI look we’re all becoming accustomed to). Read all about it, because there’s no way in hell I’m putting the pictures here and perpetuating the fraud and whitewashing.
🐈⬛ 💩 And finally, it’s this week’s Cat Dump. This edition is all about Fritzy the fireplace fiend:
You are wonderful, Amy. And there was a great documentary on Nyad around the time of her book on HBO. Funny how that disappeared (effing Zaslav). That was good. It was basically the water parts of the film. A lot of barfing, though. xo
Amy,
New subscriber to your tonic, but long time me/CFS patient - thank you for all the information in a very readable condensed format (found you on the Visible community links). I am encouraged by recent research and impatient for it to move forward on treatments for all of us!
On the subject of research, are you posting as NIH ME/cfs webinar recordings become available? I am on the West Coast where the 11 AM EST start times begin at 8 AM which is way too early for those of us with sleep dysfunction.