It's a Mad, Mad, Mad, Mad, Long Covid World

I don't quite get it. I've given up on "can't we all get along," but don't quite understand how the Long Covid community has veered off onto such an ugly course. I get it. Of all people, I get it. For me, my "48-hour flu" that started back in January of 2020 is now at 32,459 hours. Not that I'm counting. Of course I may already be in trouble because I used the word "flu" when describing my world. Semantics is part of what got us into this mess.

My theory on "the why" before I get into "the what" is, people are at their wits end--there's another more graphic figure of speech I'd use but highly inappropriate given the high rate of suicide among those with Long Covid. Before you take that line out of context, we are depressed because we are sick and not the other way around as Natalie Shure and other gaslighting journalists would indicate with terms like "FND" or functional neurological disorder. 











Before you become alarmed with my use of the "S" word, I am managing my mental health and in the best (poor choice of words) place I've been in terms of accepting my situation.

This is all a long way of saying, people are realizing they quite possibly will be disabled the rest of their lives with many getting worse. This is a tough pill to swallow and (and I've swallowed a lot of them over my Long Covid journey) is that people are on the brink and starting to lash out and act a bit out of character.

My run blog turned Long Covid recovery blog and related social (TikTok, Xwitter, Insta, YouTube) over time has found some solace and solidary in the Long Covid Community. I have made many good online friends as a result, but it is now becoming more and more divided and frayed. The "community" has been a source of group therapy in a sense (much cheaper as I often point out,) and for me, advocacy. 

Taking it a step further, I have my "sophomoric" humor (at least I try to be funny and provide some levity in a very dire situation) with my "Man in the Robe Productions" Long Covid digital shorts which often take jabs at what I felt was the common enemy; Vinay Prasad (aka "The Angry Conspiracy Bear,") Steve (aka Harry Balsach) Kirsch in one of my favorites, "Long Covid Jeopardy" and the like.

Along the way there has been at least one high profile "grifter" that 90% of the community reviled as she seemed more into flying first class and shining a light on herself versus her stated mission to help the community. Her organization has since been dissolved.

There are a few "wolves in sheep's clothing" that enter Twitter (X) spaces then "sucker punch" with a tweet or quick jab in a space. Along the way, I have blocked my share but only two people with Long Covid that I can think of. One (featured in both Long Covid Jeopardy and in my latest Long Covid Mean Tweets) who put out a manifesto of everyone he despised in the Long Covid Community with a few personal attacks including calling me a "creepy looking dude." Fair point.


















The second "block" is a frequent lounge participant and had previously told me to "fuck off" in so many words, but more recently told me to "enjoy your brain bleeds" as I'd started (somewhat controversial or certainly still in research mode) triple therapy for blood clots. Shocking to hear this from someone with Long Covid to wish this upon me. 

I should point out AGAIN that I do not give out medical advise as I am a former art major turned to business major; not a neurologist, epidemiologist, and any doctor for that matter. I am OKAY with the community stating opinions about studies or treatment in general but I think that doling out personal medical opinions especially without asking is simply not cool. Most of these people and opinions are NOT in the medical profession so kindly keep your doctor conversations between you and your doctor.

Short of being defensive, I have tried practically everything; Ketotifen, anti-virals, tons of expensive vitamins I've peed down the toilet, prolonged Paxlovid, and low-dose Naltrexone to name a few. I have been open about my journey and felt this might be helpful (again short of giving out or endorsing any medical treatments) to others. 

If anything I am getting worse, not better, so if I want to try triple therapy (three different blood thinners) and assume that risk, then that's my choice. I am doing it under a doctor's supervision at RTHM (aforementioned "blocked" friend also railed on them as grifters--which I take exception to.) I am frequently testing for any possible side effects, but then again, that's my business but I guess shame on me for sharing my experiences on twitter. BTW--I have tested for and my doctors have found clotting so it's my business to treat that. 

My "microclots" test results

Same person has attacked the integrity of distinguished Professor Resia Pretorius and Professor Doug Kell--both prominent names in the Long Covid community doing research around microclots.

DISCLAIMER: I am not saying anyone should consider "triple therapy" without consulting with their doctor. I don't view microclots as a panacea for treatment of Long Covid, BUT, if I can't breathe and my lung and heart images are fine then what else could explain dyspnea?

The second area of "divide" among the community I've seen is "lashing out" at doctors, professors, and the research community working on finding solutions to the puzzle that's Long Covid. I recently came out with a DC Comic's inspired Villains and Super Heroes of Long Covid. The first list was universally praised with some mentioned above (like "Angry Bear" Joe Rogan, and Kevin Bass.) The later created controversary as many with Long Covid attacked my list as being "grifters."



Some of the Villains on my list (like current CDC Director Mandy Cohen) you might find "odd" given their stated position, but as I shared in a lounge yesterday, it's become harder and harder to discern between the "good guys" and the "bad guys" much like Star Wars where the stormtroopers working for Darth Vadar actually wear white. In the case of Mandy "the minimizer" she seems to lack the words "Long Covid" in her vocabulary and still thinks washing hands is protection against a potentially crippling virus.

I've seen (one of the above, or actually both my "blocked" Long Covidians) attack some of these "heroes" personally online. Names like Kell and Resia Pretorius who I think highly of were virtually "dissed" as being of the same ilk as the woman "banished from Long Covid Island" for posting her expensive rugs. I get it, it's America (for some of us) and everyone has a right to an opinion, but it seems that most all of the experts draw distain sometimes simply for word choice in a tweet.

Help me understand or "show me the receipts" where they are somehow diabolical or have some nefarious intent other than to solve this mystery of Long Covid and HELP us. I stand by both lists of Villains and Super Heroes.

My list of "Heroes" is not "gospel" and everyone has a right to an opinion, but it does say something that most everyone agreed with the villain list but many of the heroes were called into question. Everyone is entitled to their point of view but I think we've veered off course if we're attacking the very people trying to help us.

The latest (very much related) "divide" in the community is the biomarker paper (Nature Med) authored in part by (two of my Super Heroes,) Prof. Akiko Iwasaki and David Putrino of Putrino Labs; "Distinguishing Features of Long Covid Identified Through Immune Profiling."  

The negative backlash was twofold; 1) people were saying, "I've been saying this since 2020!" and 2) it's a bit like the RECOVER scorecard that was universally panned. There are patients who don't quite fit some of the paper's findings; notably, low cortisol and EBV (Epstein Barr Virus) markers. Short of contradicting myself and stating medical opinion from a former art major, the one thing I've found is that there are many commonalities among people suffering from Long Covid but there are also many differences. 

Some adversaries of the Long Covid Community in prominent roles not exactly our allies












Ironically, as I went to link to Putrino's Xwitter profile, I see that he's posted a response yesterday (HERE,) to the negative response he's encountered as a result of the paper and all the negative press it's received. 

Once again, I'm scratching my head. Yes, it's frustrating as hell to still be at the "identification phase" of Long Covid versus the treatment and solution phase. I had three different people reach out to me and tell me about the article including my friend Tom Costello, NBC News Correspondent (who's covered my story.) The way I look at it is that mainstream media picked up the story and it had great traction shining a much-needed light on a colossal issue. Yes, seems there are areas to pick apart--like the total population affected by Long Covid, but it seems we're arming ourselves to quickly attack anyone trying to help.

Perhaps NOT ironic, the "Angry Bear" (Vinay Prasad,) Beth Hoeg and perplexing UCSF published the steaming pile of sewage this week titled, "Statistical and Numerical Errors Made by the US Centers for Disease Control and Prevention During the COVID-19 Pandemic." The article gaslights, and cherry-picks snips of data with more than a tinge of "dirty" money influence--specifically  conservative PAC money (Arnold Ventures.) I won't link to their "steaming pile of (poo emoji)" paper. 

UCSF is perplexing in that they allow the Angry Bear to completely ignore his Hippocratic oath and actually mock the Long Covid disabled community yet have a study that's showing some promise. In other words, even more confusing that there are white hats amongst the black hats.

Part of my point is that the "Angry Bear" and other gaslighting and minimizing "press" gets far more clicks and traction than a well-researched fact-based medical journal and the accompanied mainstream coverage so shedding MORE light on Long Covid is a "good thing."

As I was flying home from Boston after a Long Covid brain study, I got into a "healthy" debate with a fellow LC sufferer over a doctor's use of the word of "post viral." We went back and forth a bit in a healthy manner and I reached out to her via DM to try and understand her perspective which was the HIV community would be in an uproar over the use of the word "post viral."



























My point to her was that dating back to 2020 at National Jewish Health and 2021 at Mayo Clinic, doctors would describe the multi-system chaos in my body as a post-viral illness. I didn't take exception to that language then or now. The metaphorically speaking (once in a 100 year "super" virus) Covid-19 tornado "left town" but the aftermath has created several severe ongoing issues. We had a civil exchange and hopefully both understood our respective points. This is how such conversations should go. In the end, we may agree to disagree but we are both suffering.

Another case where semantics gets us in trouble.

The last "leg of the stool" is the feverish divide between the Long Covid community and the ME/CFS community. This one I get to a degree as many with ME/CFS have suffered for decades and along comes Long Covid and it is a headline story. Where the divide begins is (in part) for the ME/CFS community wanting to rename or rebrand under one name.

In my opinion (not that this entire piece hasn't been) is that there can be overlap, but there are also unique differences so I don't care for the single "brand name." I also have found some commonality and solidarity with those with ME/CFS and have been on more than a few legislative calls trying to raise awareness for related legislature trying to help the disabled community. We can disagree on the brand, but we don't need a "war" with the ME/CFS community.

The "blocking" of fellow "Long Covidians" has increased in frequency and perplexity as has the number of "self-imposed" breaks from the toxicity of Twitter--myself included. 

I'll use one last confusing example that I shared in Dave's lounge yesterday and that is (on my Hero list) Dr. Wes Ely. I became a "fan of his when I saw one of his TikTok videos that I've shared before (and I'll paraphrase) as he described the damage that our brains are having, we don't have answers yet, but people with Long Covid need to be heard and shown some compassion. Yes, I've seen him get roasted for "word choice" and he seems to have fallen into the questionable hero status. Broken record--I don't understand this.

To try and wrap this up, I get it. Whether you have been sick for approaching four years or one year, we are sick and tired of being sick and tired, but we are stronger as one than we are arguing amongst ourselves for a common goal and that's to find answers from people trying to help, and treatment to get some sliver of our lives back. 

Thanks for listening. I'd welcome your comments here or on Twitter







Comments

  1. "Where the divide begins is (in part) for the ME/CFS community wanting to rename or rebrand under one name."

    No, the ME/CFS community does not want to "rename or rebrand" LC and ME/CFS under one name. See recent robust community opposition to Chesley Heymsfield's "One Name Campaign".

    ReplyDelete
  2. No one in the community wants to "rename or rebrand" LC or "lump it in" with ME/CFS. This narrative has been made up in the heads of a small group who have been relentlessly attacking other sick people, concocting lies about researchers whose work they're entirely unfamiliar with, and twisting words beyond all recognition to post-hoc justify their narratives and conspiracy theories.

    Everyone in the community recognizes that Long Covid is caused by SARS-CoV-2 and viral persistence is a critical pathology that needs to be properly addressed by research and trials. No one has ever denied that. No one wanted the "One Name Campaign". The researchers being slandered as viral persistence deniers are performing or funding research in to viral persistence.

    The divide that exists is between a small group who've
    - called themselves "Long Covid purists"
    - who want to "remove ME from the conversation" despite many Long Haulers suffering from ME (not all Long Haulers - no one EVER claimed that)
    - who become apoplectic when ME/CFS patients and researchers warn new Long Haulers who may also have ME/CFS about PEM and the incredibly serious danger of pushing through it for those who do have it (no one EVER claimed autonomic conditioning isn't helpful, as tolerated)
    - who claim the ME/CFS community is trying to "erase" Long Covid

    and everyone else asking them to stop the relentless lying, to stop crafting false narratives, and to stop working themselves up into a rage against everyone and everything else.

    The "war" isn't substantive, it's been manufactured.

    ReplyDelete
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