Thread by @doctorasadkhan

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

Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n

The symptoms are relentless & unbearable. No organ system is spared. Our tissues are starved of oxygen. This is NOT psychological/deconditioning/a slow recovery. This diseases tortures, disables & kills. It has driven some to suicide. It very nearly killed me 4/n

Sufferers deserve urgent biomedical investigation & treatment. Instead they face apathy, disbelief, hostility & gaslighting like the #MECFS community has done. There are few whose circumstances & resources allow them to seek experimental treatments abroad. This is not ok. 5/n

It is unacceptable for pointless studies of exercise & talking therapies to be funded when we have a life-threatening thrombotic vasculitis. It is unacceptable that we have to wait till autumn 23 for the results of trials like #STIMULATEICP. This research has to happen now 6/n

It can be set up within weeks if there is the will as we saw with the #RECOVERY trial for acute #COVID19. This is an urgent moral & economic imperative. It should not fall to sick patients & their loved ones to drive this; our energies are scarce as it is 7/n

Sadly some clinicians who should be spearheading this work continue to minimise the effect of this virus on children. They openly call for children to be exposed to infection. You know who you are- move on please. History will not judge you kindly @RCPCHtweets 8/n

It is staggering that schools which should be a secure sanctuary for children are a hazard to their health & that of their #CEV families. This is preventable with #masks & #ventilation. Yet there are some in powerful positions whose mission is to deny that #COVIDisAirborne 9/n

I would like to pay tribute to @BinitaKane’s indefatigable spirit in the face of personal tragedy. She continues to campaign for safe air quality in schools whilst advancing biomedical research on top of a full time job. Proud of you sis- ‘it’s never easy for prophets’ 10/n

A handful of individuals prepared to break with the existing narrative, structure & dogma can bring about massive change. Sometimes, one has to take risks in the face of hostility. We are not going to stop until everyone has access to the therapeutics they need #TeamClots 11/n

For the science behind the microclots story, look at the papers at dbkgroup.org/longcovid/ describing the work of @resiapretorius & @dbkell soon to be joined by papers from @PutrinoLab @BeateJaegerMD 12/n

Please demand biomedical research & treatment for #LongCovid from your local health authority; write to your MP (writetothem.com) & do not accept discredited therapies like curative CBT & exercise 13/n

To support the global research effort into microclot detection, please consider donating or forwarding this fundraiser by @polybioRF for @resiapretorius & @dbkell’s efforts to create a method all will be able to access 14/n

https://twitter.com/doctorasadkhan/status/1518682980281106432

I would like to pay tribute to the remarkable young woman at the heart of this story. Her courage, determination & maturity have been an inspiration to many. Despite her suffering she has been a huge comfort to me. Jasmin I look at this when I feel like giving up. 15/n

#Microclots are not the full story & there are no magic cures. But research & treatment has to start somewhere. Also- please do not self-medicate. Jasmin & other children who have travelled to Germany have had expert supervision 16/n

#MedTwitter #MedEd #GPTwitter #psychtwitter #pwME #TreatLongCovid #ResearchLongCovid #Lyme #MyalgicEncephalomyelitis #HSD #EDS #POTS #vaccineinjuries #MCAS #FQtoxicity #CCI #Fibromyalgia #PANDAS #PANS