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May 1 22 tweets 12 min read Twitter logo Read on Twitter
We are in our fourth year of work to understand #LongCovid and we now know things about it thanks to science. After being told again by a quasi-well meaning, if uninformed, clinician that LC is just functional neurological disorder (FND). Here’s a 🧵 on why LC IS NOT FND (1/)
So, what *is* FND anyway? Anyone who works in FND has to admit that over the years it has always been a problematic diagnosis with far too many unskilled and uninformed clinicians considering it to be synonymous with conversion disorder (read: “psychosomatic illness”) (2/)
More recently, those who know the field will acknowledge that a more nuanced point of view has emerged in regards to FND. Namely, skilled clinicians who are trying to treat FND in good faith hold the view that in the patient with FND, *some* change has occurred in the brain, (3/)
which is leading to downstream issues in the body. The issues occurring in the body are all very real, the skilled FND clinician will tell you, but the brain changes are the root cause. Now, the point of this 🧵is not to attack the validity of FND - whether or not FND exists (4/)
is immaterial to this conversation. Instead, let’s discuss how WE KNOW that #LongCovid *is not* FND. Let’s start with this image from the incredible recent @Nature review written by @ahandvanish, @EricTopol, @LisaAMcCorkell and @julialmv. It shows 5 ways that LC symptoms may (5/) Image
be caused by different systemic mechanisms. Now, to be clear: these 5 mechanisms were not proposed by the study authors just pulling theories out of the air. They were proposed because dozens of high-quality studies have been published in the best scientific journals in the (6/)
world showing evidence that people with #LongCovid now have different physiology to people who do not have Long COVID. So let’s start with the first one: immune dysregulation. Now, there are so many amazing pieces of literature that we can select to show immune dysregulation (7/)
in #LongCovid, but I want to select clean articles that don’t leave the door open for an argument that the brain is controlling the immune system, so let’s start with this gem from Zollner and colleagues that was published in Gastroenterology showing persistent virus in the (8/) Image
GI tract of those with #LongCovid, compared with healthy controls. As @VirusesImmunity, myself and many others have shown, we certainly do then go on to see immune sequelae and exhaustion that is highly consistent with a body under prolonged immune assault, but important to (9/)
note that this immune dysregulation is accompanied by clear evidence of viral persistence. In Zollner, we see it in the gut, which naturally leads to the sort of gut dysbiosis that has been reported by many, including Giannis and colleagues who showed changes in bacterial (10/) Image
colonies in the gut that were related to acute #COVID infection in those who then develop #LongCovid. So if you have LC, persistent virus is often found in your GI tract and then gut dysbiosis emerges. Logical, local cause and effect. But let’s keep looking, because next we (11/)
have the paper from David Walt’s group showing that spike proteins are still circulating in the bloodstream of a majority of folks with #LongCovid compared to none of those without LC. Wow! I wonder what that does to you? Welp, thanks to @giorgialupi we have an infographic! (12/) Image
It summarizes some of the brilliant work from @resiapretorius, @dbkell, @doctorasadkhan and many others showing us that when you add spike proteins to *healthy* blood, microclots form. That’s right, folks: nothing functional here, just another nice dose of CAUSE AND EFFECT (13/) Image
What about the brain? Of course when you start talking about brain changes and FND things get dicey, so let’s deftly avoid this TERRIFYING study in @Nature by Douaud et al showing that every acute #COVID infection, #LongCOVID or not, appears to damage your brain (😱🫣), and (14/) Image
look at some animal work from the brilliant @michelle_monje and @VirusesImmunity et al in Cell showing us that even COVID infections that were limited to the lungs in animals resulted in chemokine release that caused brain damage and cognitive impairments in those animals (15/).
If that were not worrying enough, we then also need to come to terms with the findings of Choutka et al in @Nature showing that different patterns of autoantibody production align with different symptom clusters based on different locations of viral persistence! What does (16/) Image
this tell us? It tells us that your particular set of #LongCovid symptoms may be related to the extent to which the virus is present in different organ systems. Taken together, we can start to feel confident now that the consensus scientific evidence is telling us that (17/)
#LongCovid is an infection-associated complex chronic illness, (just like what members of the #MECFS, #Lyme and other complex chronic illness communities have told us from the start). In those with LC, this virus gets under your skin. It DIRECTLY affects every single organ (18/)
system and disrupts many of their functions in ways that are sometimes too subtle to be easily detected by our blunt mainstream tests, but causing organ system dysfunction and damage nonetheless. The fact that we now have dozens of studies showing these direct causal links (19/)
means that a good-faith argument linking FND to #LongCovid is no longer possible. You can attempt to argue with the evidence presented on this thread, but you have to acknowledge that your feelings on the topic are exactly that: feelings that disagree with the current state (20/)
of the science. Please understand that the point of this thread is not to denigrate anybody’s professional background or clinical skillset (if you happen to be an FND specialist who is reading this), but it IS the point of this thread to inform people on the settled science (21/)
of #LongCovid. It is the point of this thread to encourage clinicians to rethink their biases and update their clinical approaches in the presence of new literature. To a hammer, everything looks like a nail. Please just be smarter, better informed and kinder than a hammer. (end)

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More from @PutrinoLab

Mar 16
As I reflect today on #InternationalLongCovidAwarenessDay I know that there is a lot of suffering, loss and grief to account for, but I wanted to offer a message of hope. Today, we:
1) Categorically know more about #LongCovid than we did last year
2) Have educated thousands of 1/
clinicians on basic care and management strategies
3) Have some good-quality drug trials in the mix (thanks @hmkyale and @VirusesImmunity among many others)
4) Have #MECFS and #vaccineinjury cohorts being added to clinical trials (finally!)
5) Microclot research is being taken 2/
seriously by all serious scientists (and major journals: thanks @doctorasadkhan, @dbkell, @resiapretorius and all #teamclots fam)
6) viral persistence research is being taken seriously by all serious scientists (thanks @microbeminded2, @MBVanElzakker and many others)
3/
Read 5 tweets
Feb 2
Exercise and #LongCovid. Again. Always discouraging to see GET receiving funding after the damaging work that has been done in #MECFS and the monumental work done by patients to reverse guidelines that were framed around incompetent, even fraudulent science, but let’s have (1/)
this discussion again:
✅ YES: Many people with #LongCovid experience dysautonomia
✅ YES: Many people with dysautonomia can experience benefit from autonomic rehabilitation so long as it is conducted in a way that respects PEM/PESE
✅ YES: In advanced stages of autonomic (2/)
rehab (that a large proportion of patients with #LongCovid and dysautonomia never reach, btw) rehab can include symptom-titrated physical activity
However:
❌ NO: Symptom-titrated physical activity is the not same as GET, because GET protocols START with aerobic activity which 3/
Read 11 tweets
Jan 2
New year, new (but also quite old) conversations. With few new/transformative treatment options for #LongCovid, #MECFS and other complex chronic illnesses yet to emerge, I wanted to take some time to discuss what it is to be a partner to someone with complex chronic illness. 1/
Partners: I know you did not sign up for this. No one signs up for this. Yet, in the same breath, everyone who enters into a committed relationship with another person(s) signs up for this. I know that not everyone in a committed relationship is (or can be) married, but let’s 2/
talk about marriage. Historically, marriage has not always had the best reputation (i.e. let’s not pretend that it was always about love lol), but in the most basic sense it has been about binding two people together and having them make a formal and public commitment to one 3/
Read 16 tweets
Dec 22, 2022
Many changes are always needed, of course, but I'm seeing a specific need to shift an aspect of how mainstream media reports on #LongCOVID, #MECFS and other complex chronic illnesses. Recently there has been a slew of articles written by "learned doctors" (or even the 1/
spouses of physicians) that aim to minimize, deny or psychologize #LongCOVID, #MECFS and other complex chronic illnesses. The problem is that mainstream media gives these article too much weight because they were written by folks with certain credentials who work at certain 2/
institutions. The reality is that the majority of these articles have been intellectually flimsy hit-pieces written by people who have no subject matter expertise whatsoever, yet have sufficient ego to think that their superficial scanning of a cherry-picked pocket of the 3/
Read 10 tweets
Dec 9, 2022
Them: Microclots and platelet hyperactivation in #LongCovid can't be quantified by conventional standards, so we shouldn't use it as a biomarker
Us: Hold our beer(s).
Step 1: Take blood, spin blood, stain blood, look at blood under a microscope and capture an image of it 1/
Step 2: Read the image into @MATLAB, extract the "green" layer of the rgb image (because that is where all the fluorescing is occuring) and binarize the image so that only things that fluoresce at a certain intensity show up. Count the number of pixels that show up white. 2/
Step 3: Compare how many pixels fluoresce in controls vs. folks with #LongCovid and marvel at the difference. 3/
Read 5 tweets
Nov 7, 2022
Many folks have tagged me in the @ManvBrain article about #LongCOVID and I have just been so swamped that I haven't had a minute to respond, but I've retweeted some stuff by @meghanor and @sunsopeningband that say a lot of things that I wanted to say. I'll say a few more 🧵1/
The story of #LongCOVID, #MECFS and other complex chronic illness is a story of systemic bias, injustice, and a set of organic, biological illnesses that cannot be well characterized by conventional scientific approaches. I've just been blessed to spend the last week with 2/
@resiapretorius who has taught me (with endless patience and kindness, I might add), how #COVID19 triggers biological processes that create microclots and platelet pathology in people with #LongCOVID, whilst deftly avoiding every mainstream blood test we have for coagulopathy 3/
Read 18 tweets

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