Top Tweets for #ScIG
July marked graduation ceremony in #Bujumbura for the "Chinese Plus Electrical Skills" training program.
Jointly organized by #Shanxi Construction Investment Group (#SCIG) to #Burundi and #ConfuciusInstitute, the program saw over 50 local youths complete a 1.5 month curriculum
“Some patients, who didn't know whether they received the drug or placebo, called us begging for "whatever they got" in the trial because for the first time since getting sick, they were feeling better.”
#SCIG #IVIG #Care4Complex #LongCovid
#LongCovidAwarenessDay My thoughts below:
In the first week of April 2020, a medical resident called me to ask for an urgent appointment: he had #COVID in March and didn't recover and, as a result, could not return to his hospital duties. He said some of his attendings also didn't recover and were experiencing palpitations, tachycardia, fatigue and brain fog. They thought it could be #dysautonomia.
Unsurprisingly to me, COVID infection was causing a myriad of lingering disabling symptoms that were strikingly similar to #POTS and #MECFS. There was no term #LongCOVID back then, but clearly, there was a post-acute infectious syndrome that left millions of patients with #chronicillness and disability. As I was busy seeing patients, I enlisted the help of @serawhitelaw to write a case series of patients with post-COVID dysautonomia FAST.
A few neurology journals rejected the paper -- again unsurprisingly, because dysautonomia has not been a popular topic in #Neurology unfortunately. One reviewer, probably unfamiliar with #POTS, said in a review: "How do you know these patients have POTS? Healthy people too can have postural tachycardia."
Thankfully, an immunology journal was interested and did publish our paper. It became the first largest case series of patients with POTS and other autonomic disorders after COVID. Shortly after, a term #LongCOVID was coined, and many large studies confirmed post-#COVID dysautonomia as one of the major mechanisms of Long COVID.
Unfortunately, 6 years later, we are still in limbo regarding treatment and still utilizing pre-pandemic therapies that we've used for dysautonomia and other conditions. Many interesting studies on pathophysiology have been done, we know a lot more than we did, but millions of patients have not benefited from this knowledge because TREATMENT is the only thing that matters to people suffering from this highly disabling syndrome.
I am also disappointed about therapies... I didn't talk about it publicly, but I was a PI and on the executive committee on a great full-of-hope trial of subcutaneous immunoglobulin for post-COVID POTS. We recruited and randomized patients when the trial was stopped abruptly without good explanation. Some patients, who didn't know whether they received the drug or placebo, called us begging for "whatever they got" in the trial because for the first time since getting sick, they were feeling better.
Medicine is a science, but also an art: while we must follow evidence-based and data-driven science, we must not forget that at the end of the day, it's PEOPLE that we're serving, not the high-impact journals or scientific establishment.
https://t.co/lwb3OWlHHH
Maxime Dely on The vital Role of Plasma in Immune-Deficient Patients
https://t.co/KMs06xVPyJ
#Headlines #Health #Hematology #Hemostasis #HemostasisToday #Immunoglobulins #ITP #IVIG #Medicine #PlasmaDonations #SCIg #Thrombosis #MedEd #MedX
Weis jemand bei welchem Arzt oder Klinik ich mich melden sollte die erstens Subkutane Immunglobuline (#SCIG) und intravenöse Immunglobuline (#IVIG) ganz allgemein anbieten und zweites ob es in der Oberpfalz Anlaufstellen gibt? Va bei #mecfs #longcovid Leuten wie mir … ?
Wow, I just came across a thread on Reddit with a ton of other longtime #IVIG and #SCIG patients who have recently had severe reactions to multiple infusions - just like me and @Lilacmess have talked about so many times. We both started tolerating it even worse around the same time, after about 5 years on it - I couldn’t even handle half my usual dose anymore and had to stop at Christmas 2025, and have been off it since, relapsing badly.
The other patients are also wondering if it’s from the increase of covid antibodies in the IgG supply, which @PutrinoLab had also speculated a bit about. I hope the companies or some researchers will try to look into this if it’s becoming a more widespread issue. Not good news, as it may be that my only option is to try SCIG again, if I can even get access back. 🫠
(link below for interested parties)
The only thing I haven’t tried from @organichemusic’s 2024 paper is #SCIG/IVIG. My doc is keen on #Hizentra but the prior bloods alone are $000’s. I note some small gains on X, some bad stuff and lots of no change. Please: who did well in this paper and did it last? #LongCovid
Please also reduce the price of immunoglobulin - #IVIG and #SCIG - to what they cost in Europe. Many Americans, including those with #LongCovid, need access to these medications to get better and rejoin the workforce.
I agree with Mr. Musk that weight-loss drugs like Wegovy can save lives & save money, but not at the price that Novo Nordisk is charging.
Will Mr. Musk make clear that Medicare shouldn't pay more for these drugs than they cost in Europe, where prices are up to 15 times cheaper?
PI #Wrapped! Here’s to all our incredible #InvisibleIllness warriors. To those who dedicate endless hours to #IVIG or #SCIG infusions, endure countless waiting room visits, tirelessly advocate for themselves and others, and so much more. 💖 #SpotifyWrapped
Meet Sam, a #CVID warrior! 💪 Sam manages her PI with weekly #SCIG infusions, which help her lead a healthy, normal life despite her #ChronicIllness. Read our latest blog post featuring Sam here: https://t.co/dy4nxmgIed
Meet Aubrey, a #CVID warrior! 💪 Her #SCIG treatments have allowed her to live a fulfilling and happy life, and she wants to inspire others with #PrimaryImmunodeficiency to do the same. ❤️ Check out our latest blog post featuring Aubrey: https://t.co/W1Ia2b8hrE
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