This Week in Long Covid

The Alliance, PASC, and the NIH

Issue 21.5: Organizational Advancements

This week we were interested to see what we believe is an organizational first: The Long COVID Alliance is taking a 360-degree look at the problem of long-haul COVID. Members of the Alliance include patients and their advocates, along with scientists, infectious disease experts and representatives from pharmaceutical companies.

By adopting a multidisciplinary strategy, the Alliance hopes to leverage this wide knowledge base to secure research funding and make policy recommendations. Their recent letter to various directors at the National Institutes of Health is an example of their approach.

Their focus is, in a way, quite specific: They want to “transform our understanding of post-viral illness.” According to their website, the Alliance sees “many similarities to other chronic illnesses known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, and mast cell activation syndrome (MCAS), just to name a few.”

We note that there are several more autoimmune disorders that appear to be the result of a viral attack on the immune system.

Our Take:

The Long COVID Alliance views the Long Covid problem as another example of a post-viral illness. Their multidirectional attack on long-haul Covid, with the aid of patients, researchers and pharma companies, among others, is savvy. They just might, in addition to helping figure out the mystery of Long Covid, help tease out the workings of these other diseases that are also triggered by viral infections — the list of which is long and, in some cases, quite damaging. Their journey has only begun, but they are worth watching.

Quotation of the Week:

You thought you had Long Covid. Apparently, you really have PASC …

"Many of you are now aware of what had been called long COVID, but actually what that really is is post-acute sequelae of SARS-CoV-2 infection, which we're now referring to as 'PASC,' or P-A-S-C."

Anthony S. Fauci, MD, director of the National Institute of Allergy and Infectious Diseases (NIAID), and the Chief Medical Adviser to the White House COVID-19 Response Team

To be honest, we prefer “Long Covid” to PASC, which sounds less like a health condition than a criminal enterprise in a James Bond film. But scientists prefer acronyms to words, so, there you have it.

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News of the Week:

Francis S. Collins, MD, PhD, the director of the National Institutes of Health, announced “a major new NIH initiative to identify the causes and ultimately the means of prevention and treatment of individuals who have been sickened by COVID-19, but don’t recover fully over a period of a few weeks.”

This work will fall under the title of the NIH PASC Initiative. According to Collins, the Initiative hopes to answer:

  • “What does the spectrum of recovery from SARS-CoV-2 infection look like across the population?

  • How many people continue to have symptoms of COVID-19, or even develop new symptoms, after acute SARS-CoV-2 infection?

  • What is the underlying biological cause of these prolonged symptoms?

  • What makes some people vulnerable to this but not others?

  • Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic heart or brain disorders?”

The NIH also launched the first in what will be a series of “research opportunity announcements” for studying PASC. With this the power of the NIH, of which NIAID is a part, is now invested in the hunt for answers.

Datapoint of the Week:

Does getting vaccinated for COVID-19 help reduce symptoms in people with Long Covid? Reports are entirely anecdotal at this point, but some patients are reportedly feeling better after receiving their jabs.

The YouTube link below reviews an informal study of Long Covid patients who were vaccinated jabs at least two weeks earlier, and at about the 5:10 mark one hears the result:

27% feel slightly better

5% feel near or completely normal

In other words, 32% — or about one in three — of long-haulers benefited from their vaccinations

Those results are informal, but for about a third of patients, this is good news. It also points to one theory about Long Covid: that there are viral remnants that remain in these sufferers and that is what is causing their symptoms.

Tweet of the Week:

Homework:

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