Millions of people suffer from long COVIDs. Why is there no treatment yet?

Many patients, such as Hayden and Gustafsson, have overlapping symptoms. Virginia Senator Tim Kaine, who has a long COVID, says his nerves crouch “24-7”, as if his fingers were forever stuck in a glass of Alka-Seltzer.

But even diagnosing long COVIDs requires caution. There is no x-ray to detect it or a blood test to prove what is happening, Dikes told lawmakers. Without it, treatment remains elusive.

“I’m knocking on the doors of all pharmaceutical companies, you guys Got To get involved, “he said. “They say OK, okay, we’re committed, but basically, how do we prove to the FDA that our medicines are working?”

Dr. Larry Tsai, Head of Respiratory and Allergic Product Development at Genentech, said clinical trials to see if existing drugs could be reused for long-term COVID “are likely to begin soon.” I told The Chronicle. But a new drug? Still, he said. Such tests “wait for a better scientific understanding of the root cause” and await a clearer understanding of who responds best to them.

Prior to Gustafsson’s mild COVID infection, he ran several miles daily, hiking, surfing and playing the guitar. That’s what many long-haul carriers say: they were very healthy until they weren’t. Then they felt decades older than their year.

“My chest pain felt like I had a heart attack at literally every moment of the day, 24 hours a day, 7 days a week,” he said. “I felt like my heart exploded from my chest.” Still, his test was normal.

Except for one: his cytokine levels show high inflammation.

Gustafsson’s doctor at Stanford University prescribed steroids and other anti-inflammatory drugs. However, it wasn’t until March that he was relieved after trying low doses of naltrexone, which is used to block the effects of opioids, and colchicine, which is usually for gout.

Now with a “65% improvement” he is back at work, but he said there are still bad days. “It feels like a waiting game for everyone.”

It took more than a year to even agree to the long definition of COVID, but the World Health Organization is finally here. One offer During October. The syndrome usually occurs “usually 3 months after the onset of COVID-19”, the symptoms last for at least 2 months, and “cannot be explained by another diagnosis”. The organization concluded after consulting with researchers and patients that long COVIDs affect daily functioning, can persist from the beginning of COVID infection, and fluctuate over time.

One of those patients was Lisa McCorkell from Auckland. He co-founded Patient-Led Research Collaborative after obtaining a long COVID. It is one of several advocacy groups that meet monthly with the US Centers for Disease Control and Prevention.

“If the HIV / AIDS movement isn’t widespread, I don’t think COVID will be long,” she said. “They knew that those closest to pain should be closest to power.”

In March 2020, McCokel almost earned a Master of Public Policy degree when he suffered from classic COVID symptoms such as shortness of breath, body aches, and even swelling of the extremities called COVID toes. Later, she developed POTS, a racing heart while standing, and other symptoms that she felt more manageable since vaccination. However, like most people infected early on, there were few tests and she was not diagnosed.

“It’s now back to bite us,” she said. This is because research studies require participants to undergo a COVID diagnosis, as well as workers’ accident compensation. “Creating them on condition that we do some kind of testing is one of the things we are fighting for.”

In a long COVID treatment trial Funded by the federal government is research on how cannabis, magnetic resonance imaging, and even songs can help. So far, most are small.

“This is a really exciting field of study, but we need to carry out well-designed and rigorous research,” said Dr. Lisagen, co-director of Stanford University’s long COVID clinic.

This goes back to why patients are so dissatisfied. “We are trying to understand the cause of the long COVID,” says Geng.

Like many patients, Hayden can’t wait for the results. “People need help now — not six months or two years from now. It’s painful and unfair.”

Researchers at UCSF’s LIINC study have collected a lot of data from Hayden, but it’s not a cure.

“Her case is pretty serious,” said Dr. Michael Persono, clinical leader and co-principal investigator at LIINC, where many participants like Hayden suffer from “post-exercise illness.”

It basically knocks her flat. She and others compare their experience to a similarly mysterious “myalgic encephalomyelitis” or chronic fatigue syndrome.

She says she “crashes” every few weeks. It’s difficult to get up. It is difficult to walk across the room. Her joints get hurt in the middle of the night, so you don’t feel rest after sleep, “she said. And there is a fog in her brain. She begins the word “sofa”, which breaks off as “ku”.

In the absence of treatment from a doctor, Hayden and other long COVID patients face each other for treatment.

“We now get much better information from our colleagues than doctors,” said Hayden, a member of a large health maintenance organization.

She takes allergic medications day and night in the hope that she will reduce inflammation and help “whole autoimmunity.” She takes fish oil and supplements with CoQ10 and NADH.

Beyond that, she is surprised that people have abandoned their masks.

“Don’t you know?” She asked her message to the masses. “You can be a lifelong disability.”