Thread by @loscharlos

"It’s been at least a year since @Stanford PASC clinic began prescribing LDN for some of their #LongCovid patients.. 'For some it has really changed their lives, & even if that’s a few people, that’s encouraging sign that needs to be investigated further'" rollingstone.com/culture/cultur…

"Since there’s little incentive for pharmaceutical companies to invest resources into LDN, some experts, including Geng, believe that the best chance of large-scale randomized control trials taking place in the United States is with federal dollars." #LongCovid

“It would be great if the @NIH could fund randomized controlled trials, because that would really give [the drug] a boost in credibility and rigor and reputation behind a scientific study in this area.” — Linda Geng, MD, PhD, co-director of the @Stanford #LongCovid Clinic

"Unlike new-to-the-market drugs, pharma companies don’t stand to profit much from one that’s been around for decades.. LDN also has yet to go fully mainstream because medical establishment has long ignored chronic & invisible conditions it has been used to treat, like #MECFS"

"Naltrexone, first developed in 1963, received the FDA’s stamp of approval for treating opioid addiction in 1984, and alcohol use disorder a decade later. The off-label use of low-dose naltrexone began in 1985 to regulate the immune systems of people living with #HIV/#AIDS"

“I almost think of LDN as a different drug,” says Linda Geng, MD, PhD, @Stanford "We’re not targeting the opioid receptor, which is the purpose of naltrexone. Rather, LDN is considered an immunomodulator & has anti-inflammatory properties, especially in the neurological system.”

"Or, as pharmacist Jack Korbutov put it, taking less than one-tenth the usual dose of naltrexone 'almost acts like a thermostat for the immune system, calming down inflammation.'"

"Though it’s not yet known why some people end up with lasting symptoms following infection, Geng says that one of the leading hypotheses is persistent inflammation & immune dysregulation. 'If that’s case, then having immunomodulator might be helpful in dampening that response'”

"That said, Geng emphasizes that it’s improbable that LDN — or any other therapy — will be universally beneficial for everyone living with #LongCovid."

“When you put these reports [on clinical experience using LDN to treat #LongCovid] together, it generates a hypothesis, & creates a rationale for a rigorously designed randomized control trial to determine whether it’s a safe and effective drug,” Geng explains.

"Until data from those studies are available, she sees the benefit of the off-label use of LDN. 'All in all, considering the different types of medications that are out there, especially ones that are being considered for Long Covid, this one of the safer ones, for sure,'"

"In addition to studying who has responded to LDN, learning more about those who don’t respond to LDN could help researchers distinguish the different subtypes of #LongCovid and identify other potential treatments to test."

"For now, research findings are limited to a small study out of Ireland, involving 36 people living with #LongCovid. After two months on LDN, participants reported some improvement in energy levels, pain, sleep quality, & ability to concentrate, as well as respiratory symptoms"

"The Canadian Institutes of Health Research-funded 160-participant double-blind randomized control trial [for LDN] that will take place at B.C. Women’s Hospital in Vancouver, and is expected to wrap up in April 2024." #LongCovid

“I felt an almost immediate boost in energy & clarity, followed by a more subtle but sustained shift in my overall energy levels. When I started LDN, I was functioning at about 30% pre #LongCovid capacity. Since starting LDN, I’m at about 65% , which is a massive improvement.”

“LDN changed my life in a dramatic way.. If I didn’t have a partner willing & able to support me while I was bedbound, I would be homeless and destitute. I worry about all the Americans that don’t have access to good healthcare and I know many people are suffering”#LongCovid

“The biggest risk [of taking LDN] in my opinion, is paying for it and it not working,” Korbutov says, noting that if people see an improvement in their symptoms, it typically happens after two and three months on LDN. #LongCovid

"According to an @NIH statement emailed to @RollingStone, these clinical trials 'are expected to launch in the coming months,' and 'will test more than a dozen potential treatments/interventions at once while learning the effects #LongCovid has on every system in the body.'

An October 2022 Reuters article reported that “advisers to the trial” told the news agency that LDN was “on the short list” of treatments to be studied as part of the NIH RECOVER initiative, but the @NIH statement did not include responses to Rolling Stone’s request to confirm"

"In November 2022, @patientled — a group of researchers living with #LongCovid — announced funding for 9 projects, including a clinical trial of LDN in treating Long Covid & #MECFS, & a study identifying other drugs that may have the potential to be similarly repurposed."

"According to Geng, there’s urgent need for randomized control trials.. given #LongCovid has left millions with long-lasting symptoms, & doctors struggling to treat them. 'We have tools.. for acute Covid, but no established treatment for LC.. LC is a huge public health problem”

@LDNRTrust @LongCovidSOS @long_covid @MECFSNews @meghanor @organichemusic @LongCovidKids @MVGutierrezMD @VirusesImmunity @WesElyMD @PutrinoLab @maosbot @Daltmann10 @drclairetaylor @EricTopol @LekshmiMD @drschweig @drjudymelinek @tmprowell @MichaelPelusoMD @dgurdasani1

Really excellent and thoughtful piece from @elizabethics & @RollingStone — Highlights the need & urgency for immediate clinical trials with #LongCovid — especially with so much low hanging fruit like LDN. rollingstone.com/culture/cultur…