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Mar 16 • 5 tweets • 6 min read
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/
7) more than ever before, community co-design and patient-led initiatives are steering #LongCovid research (thanks @patientled, @LongCOVIDPhysio, @LongCovidSOS, @itsbodypolitic, @MEActNet @ahandvanish, @LisaAMcCorkell @loscharlos and many more (apologies I couldn’t fit more)) 4/
This thread is by no means a “victory lap”: we have so much more to do and you have waited so long already. But, today I just want to say to the #LongCovid community: We are here. We are learning. We are not going to stop. We are with you in this fight, and you are not forgotten.

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More from @PutrinoLab

Putrino Lab Profile picture
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
Putrino Lab Profile picture
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
Putrino Lab Profile picture
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
Putrino Lab Profile picture
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
Putrino Lab Profile picture
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
Putrino Lab Profile picture
Oct 23, 2022
I’ve been presenting #LongCOVID material at a few conferences over the last few days, and it has led me to wonder about whether our entire system of professional development and media tips the scales against developing an understanding of complex chronic illness. Short 🧵 1/
Prior to #COVID19/#LongCOVID I interacted with the academic conference and media world through my work with neurophysiology and experimental neuroscience: not exactly simple stuff, but when a conference gave me a 10-20 min slot to speak, I could usually boil it down to 1-2 key 2/
points, give a reporter a pithy sentence that sums up the work and get the message out there. It is SO much more difficult to do this for #LongCOVID and other complex chronic illness! 10 mins to discuss a topic like “Rehab options for LC”? I need to spend min 10 mins on 3/
Read 5 tweets

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