Sneak peek at our latest #LongCovid preprint about microclot detection using imaging flow cytometry

By Simone Turner, Jaco Laubscher, @resiapretorius & @dbkell

These are 1st results from the instrument YOU funded by donating to @givewithkernls

#TeamClots

1/n Grey columns are using brightfield microscopy; black are using Thioflavin T

See the difference in size between #LongCovid & control microclots

There were statistically significant differences in mean size, number & other variables

More in the paper!

2/n

Our preprint about treatment of 91 #LongCovid patients with triple anticoagulant therapy is out! By Dr Jaco Laubscher, @resiapretorius @dbkell @JanPretorius98 & myself...
#ResearchLongCovid
#TreatLongCovid
#MECFS
#TeamClots
#MedTwitter
#MedEd 1/n

https://twitter.com/RS_COVID19/status/1638217497424850945

@resiapretorius @dbkell @JanPretorius98 Here is the study protocol

To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n

Treating hospital discharges for 14 days with half a dose of one anticoagulant does NOT mean that ‘anticoagulants are ineffective in #LongCovid’ (HEAL-COVID study) 1/n -this is a different population to the vast majority of #LongCovid
-the role of the hyperactivated platelet has been totally disregarded
-treatment dose apixaban is 5mg bd, not 2.5mg
-even if the correct population & drugs were used, #LongCovid does not get better in 14 days 2/n

Latest #TeamClots preprint on clotting abnormalities in #LongCovid. We demonstrated that the average levels of 6 inflammatory procoagulatory molecules were significantly higher in the soluble fraction of blood in #LongCovid when compared to controls medrxiv.org/content/10.110… 1/n These werealpha-2-antiplasmin (A2AP), serum amyloid A (SAA), platelet factor 4 (PF4), E-selectin, von Willebrand Factor (VWF) & platelet endothelial cell adhesion molecule-1 (PECAM-1). The mean A2AP level exceeded the upper limit of the lab reference range in #LongCovid 2/n

Now with English subtitles- #LongCovid documentary featuring myself, @BrockAnnaDr, @BeateJaegerMD, @C_Scheibenbogen amongst others. rumble.com/v1kzjhz-h.e.l.… Also dives into #MECFS interviewing @pausedME

A thread on my experience with @Vedicinals_9 for my #LongCovid. Please note that this is information & not advice. Also, I have paid for @Vedicinals_9 & have not been asked to promote the product by the vendor #LongCovid #MECFS #PoTS #MCAS 1/n Background- I experienced significant benefit from HELP apheresis & anticoagulation between Sep & Dec 2021, to the point of being able to self-care & take short walks. Unfortunately omicron x 3 more or less undid those gains & I was barely managing bed to bathroom by May 2022 2/n

@drclairetaylor @DrRichardPile @DrGoblin3 @dr_irfan_malik With pleasure. Dear Drs- don't even attempt to diagnose FND without an extensive workup. Personally I would never diagnose it because 'tests are normal' does not automatically mean 'functional'. We may not have done the right tests, and we can't test for everything organic. @drclairetaylor @DrRichardPile @DrGoblin3 @dr_irfan_malik Here are some cases where an incorrect diagnosis of FND was made- resulting in distress for all, and in some cases physical deterioration. Ultimately they achieved a correct diagnosis- too late for some

This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it’s the turn of #LongCovid

https://twitter.com/duskywhalerkate/status/1539376229886750720

I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC

UK patient travels to Germany, starts treatment for #LongCovid. Attends local LC clinic- they note pt is improving on the treatment but refuse to prescribe it because ‘we don’t agree’. No reason given. Arrogance, hubris & medical orthodoxy at its best #TreatLongCovid #TeamClots #MedTwitter #MedEd #TeamGP @AppgCoronavirus

🧵 on repeat infections, negative lateral flow & #PCR tests, and the use of #COVID19 antibody tests. An n=1 experience #OmicronVariant #LongCovid #MedTwitter #TeamGP #psychtwitter #LongCovidKids #COVIDisAirborne #CovidIsNotOver 1/n I had acute #COViD19 in Nov 2020, PCR +ve. Developed #LongCovid a month after. Had one dose #Pfizer Feb ‘21 which gave me new symptoms. Out of interest I had my anti-spike antibodies done May ‘21- they were above the upper limit the assay could measure 2/n

#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
1/n -you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
2/n

🧵 If the use of airborne #PPE & improving air quality in healthcare settings are to be ‘optional’ & ‘a matter of personal choice’, then we should give strong consideration to applying the same rule to the following #MedTwitter #MedEd #TeamGP 1/n 1. Handwashing before, between & after patients (& audits of it)
2. Plastic gloves & aprons
3. ‘Bare below the elbows’
4. Jewellery
5. Hair above the collar
6. Mandatory training
2/n

Pleased to share ⁦@FarazFallahi⁩’s #MECFS video this time with English captions featuring some of my favourite German & Austrian names #LongCovid #MyalgicEncephalomyelitis #pwME #MedTwitter #MedEd #TeamGP #psychtwitter. A sobering watch. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe neuroimmunological disease that mainly occurs after infections (including COVID-19).

Please watch, like and share the video - help us to finally get attention!

What I have learned since being unwell myself has destroyed any faith I had in my profession’s leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n

It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n

https://twitter.com/binitakane/status/1522851702088552448

(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n

A number of you have asked me how I did with #Paxlovid which I took for recent re-infection. Prior to re-infection, I was doing well on triple anticoags along with platelet/endothelial stabilisers (sertraline, rupatadine, rosuvastatin & a course of colchicine). 1/n I was noticing an improvement in mobility, orthostatic symptoms & recovery time after #PESE. My re-infection was a clinical diagnosis based on symptoms & microscopy which showed multiple new microclots; I was negative on PCR & LFT, as many seem to be with the new strains 2/n

I’ve just been made aware of a #POTS management clinic run out of @uclh autonomic service. Brace yourself. I’ve had feedback from an attendee and it isn’t good. @UKPoTS you may be aware of this @YorkCardiology @dysclinic it’s awful 1/n Run by 2 specialist nurses. Some jewels:
“We learn to think in particular ways
These ways may not always be helpful when you have ongoing health issues. Unhelpful thinking can increase symptoms. 2/n

@PutrinoLab @C19LH_Advocacy @fi_lowenstein @microbeminded2 @VirusesImmunity @MEActNet @patientled @MarkedByCovid @itsbodypolitic @TheCrankyQueer @ErinSandersNP @WesElyMD @DataDrivenMD @EbonyJHilton_MD @resiapretorius @DrAnnaNZ So far what we know for sure is that in all patients with a physician-made diagnosis of #LongCovid, there is microthrombosis & platelet hyperactivation if looked for. Lending further support to the argument that endothelitis is at the centre of this illness @PutrinoLab @C19LH_Advocacy @fi_lowenstein @microbeminded2 @VirusesImmunity @MEActNet @patientled @MarkedByCovid @itsbodypolitic @TheCrankyQueer @ErinSandersNP @WesElyMD @DataDrivenMD @EbonyJHilton_MD @resiapretorius @DrAnnaNZ Now for many people (particularly those who get treated early) triple anticoagulation will be enough. It may not be for everyone- e.g. in my case clopidogrel resistance & ongoing endothelitis has necessitated additional drugs which do seem to be helping.

A few mths before getting #LongCovid in Nov 20 I was a frontline NHS respiratory consultant; 6am gym goer; couldn’t sit still, always travelling the world with my wife & 2 gorgeous children. Sep 21- bedbound, gastroparesis, complete sound & light intolerance, bladder incontinence post-viral urticaria that made me suicidal, pericarditis, angina, cognitive impairment, crippling #POTS resistant to all medication, renal impairment, impaired glucose tolerance, intolerant of most foods. Was waiting for life to end. Got v little help from @NHSEngland 2/n

This harmful advice is doing the rounds. The obsession to get back to activity is dangerous. In #Covid19 rest & pacing are key for recovery & to avoid #LongCovid. There is zero scientific basis for the recommendations here

https://twitter.com/GrumpyYetAmusin/status/1501100047546523648

@gezmedinger @LongCovidKids @long_covid @LongCovidSOS I don’t know who the bodies are at the bottom but could #Twitterati please tweet/email them about how wrong this is and demand to know what science this is based on?