Was invited back to @StanfordMed to present to their Infectious Disease faculty last week. Few comments stuck out:
“80% of our #LongCovid patients have his exact same story: young, previous healthy, mild case, & now severely debilitated”
“It’s a very different experience to hear about #LongCovid from a patient like yourself than it is to read about it in studies, it’s critical more physicians & researchers learn about this disease from the patient perspective”
Then lots of good questions around what doctors can do to improve approach to care ~ & lot of palpable anxiety/tension around the tsunami of patients they’re seeing & expecting. “#LongCovid clinics will not be a sustainable model of care.. need better treatment”
Lastly, an attendee of the meeting reached out afterwards saying their s/o had #LongCovid and was really struggling and asked to connect. I can assure you, everybody now knows somebody with this condition and they just don’t know it.
And also reminder: Your health prior to sickness should have absolutely nothing to do with your worth or the degree to which you deserve care and treatment. ~ I only share this about myself due to the overwhelming narrative that “young healthy people are immune to this virus”
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“Her cardiologist next suggested a stress perfusion MRI..
The scan showed that, under stress, blood was failing to flow through the smallest blood vessels.. known as microvascular angina, & it is notoriously hard to diagnose.” #LongCoviddailymail.co.uk/health/article…
“she was put through a number of common heart tests, including an angiogram.. but showed no problems – her coronary arteries were clear… She wasn’t satisfied. ‘..even a gust of cold wind would set off excruciating chest pain. I knew something was seriously wrong.’” #LongCovid
“since the beginning of the pandemic we’ve seen an influx of younger patients suffering from heart problems, who only had mild cases. These are people who you wouldn’t expect to have heart issues.” #LongCovid
“A charity has seen a doubling in the number of people seeking help for #LongCovid as it warned that @NHS services are failing to meet demand… The number of people [seeking Long Covid care] nearly doubled from September to March, as cases of Omicron rose”bloomberg.com/news/articles/…
“Some 1.2 million people (67% of those with #LongCovid) say symptoms stop them doing some or all of their normal activities.”
“According to Asthma and Lung UK, many callers to its helpline are at crisis point, with some asking for advice on buying oxygen to manage their #LongCovid breathlessness. This can be dangerous if it is not issued on prescription.”
Here’s the latest data, but I’m just still shocked at the statement that “most cases last three months” ~ I don’t know of any data anywhere that would come close to that, especially since most #LongCovid cases aren’t even counted until three months.
“What the @NIH does very well, is supporting research that slowly develops..scientific knowledge. The method is good for long-term innovations that take 20 years, but not for disruptive innovation. Treatments for #LongCovid fall into the latter” grid.news/story/science/…
The underlying problem is that large federal agencies and academic centers are “like battleships,” Topol said. They “can’t really make turns and adapt to new opportunities.”
Many scientists agree: When studying a novel condition like #LongCovid, researchers should “turn to the true expert, which is the person with the condition,” said @PutrinoLab
“I think it is a developing crisis. Unfortunately, there are probably hundreds of thousands of people in our state who have symptoms," said Dr. John Baratta, “it dramatically impacts their ability to do daily activities and to be employed." #LongCovidabc11.com/long-covid-hau…
"There are a lot of people out there suffering from this that are losing their jobs because they cannot work; they cannot perform their job. And so it's pretty tough. The mental damage that a lot of us are going through is just something that you've never heard of..” #LongCovid
“Baratta said around half of his patients are unable to work. This paired with the cost of treatment leaves many patients suffering mentally, physically and financially months after their initial COVID-19 diagnosis.” #LongCovid
“If the whole world was vaccinated tomorrow and we spent just three years ‘learning to live with COVID’ under the current [U.S. public health] strategy, we could have well over a billion people living with #LongCovid” fortune.com/2022/05/08/sur…
“It reminds me of patients with #dementia. These are patients in their 20s and 30s who were healthy before—former CEOs and CFOs who were high-functioning who are now scared about their ability to manage their livelihoods with their impairment.” #LongCovid
His advice: If your aim is both to survive COVID and avoid #LongCovid, “Mask and be mindful of the public settings you’re going to go in.”
“Good masks will keep you safe,” he says, referencing N95 masks.