By David Tuller, DrPH
Lisa McCorkell leaves Patient-Led Research Collaborative after five years…
Way back in 2020, when it became clear that some people were experiencing prolonged symptoms after an acute bout of COVID-19, Lisa McCorkell helped found the Patient-Led Research Collaborative (PLRC). The organization grew out of an online health-related support group, which published the first survey on the emerging condition that became known as Long Covid. Although some dismissed or denigrated this early research, it helped draw national and international attention to the emerging phenomenon.
McCorkell recently announced that she was stepping down after five years of co-leading PLRC. Betsy Ladyzhets, co-founder and co-editor of The Sick Times, spoke with her about her time with the organization, efforts to advocate for more funding and research, the help and input received early on from ME and ME/CFS advocates, and related issues. From the introduction to the interview:
“During her time co-leading the organization, McCorkell authored influential studies published in journals like Nature Reviews Microbiology and The Lancet’s EClinicalMedicine. She also helped start PLRC’s Patient-Generated Hypothesis Journal, awarded grants to other researchers, and became a leading voice in advocacy as one of the original authors of an op-ed in Nature calling for a Long COVID Moonshot — a call that later became a bill in the U.S. Senate. McCorkell was recognized as one of Nature’s 10 people who helped shape science in 2022.”
You can read and view the interview here.
**********
News about U.S. destruction of research programs
While I was in Australia, I watched from afar as my country’s newly installed fascist government rampaged through the Department of Health and Human Services (HHS) to and its research arm, the National Institutes of Health (NIH) slash funding for essential programs right and left. Among the victims—research into COVID-19, including Long Covid, as well as ME/CFS. Multiple outlets covered the carnage.
In a story headlined “Saying ‘pandemic is over,’ NIH starts cutting COVID-19 research,” Science offered multiple examples of cancelled projects, including the following:
“One major NIAID program that began in May 2022 and was just killed, Antiviral Drug Discovery Centers for Pathogens of Pandemic Concern, promised to spend $577 million on nine U.S.-based efforts to develop new drugs to treat COVID-19. Part of that program was also aimed at designing antivirals to target entire families of disease-causing viruses, including bunyaviruses (Rift Valley fever), filoviruses (Ebola, Marburg), flaviviruses (yellow fever, dengue, Zika), paramyxoviruses (measles), picornaviruses (common cold), and togaviruses (chikungunya). The termination of the program has a ‘misleading rationale’ and is a ‘pointless, ill-advised move that will hurt U.S. science and pandemic readiness,’ says Charles Rice, a Nobel Prize–winning virologist at Rockefeller University who co-leads one of the nine centers that was funded under that program.”
Scientific American wrote about HHS’ decision to close the Office for Long COVID Research and Practice, which was established to coordinate government efforts on researching and treating the condition. Key passage:
“The closure sends a harrowing message to the many adults and children who are still navigating the complex condition, says Ziyad Al-Aly, a leader in long COVID research and a clinical epidemiologist.
“‘People have been scarred by this pandemic in the form of long COVID, and their disease is real and requires help,’ Al-Aly says. ‘The intent of the office was to really catalyze progress and realize efficiencies. Undoing it risks undoing a lot of the work, delaying a lot of progress, and [it] really is a disservice today to the more than 20 million Americans who are suffering from long COVID.’”
Fierce Biotech (I never heard of it either) covered the news about the decision to strip funds from Columbia University’s Center for. Solutions for ME/CFS—collateral damage from the president’s retribution campaign against academic institutions. Ian Lipkin, who heads the center, told Fierce Biotech: “The field of ME/CFS is ripe for clinical trials…These cuts have brought our work to a dead halt.”
**********
#ThereForME essay from a patient with severe ME
The website for the #ThereForME campaign frequently runs essays by those impacted. Last month, it published a moving piece by Neil Benton, 28, from Stockport, England, who has had ME for four years. Benton experienced a period of severe ME but received little help from the National Health Service (NHS), he wrote.
Our despair was compounded by the realisation that no-one within the NHS knew what to do. Months passed, and there were meetings, referrals, emails and phone calls, but little meaningful help. A year in, my parents wrote to my doctors’ surgery: ‘It feels like we are in an unending loop, being passed around as no one agency or person is willing or able to take charge and formulate a care plan for Nick, and as a result, after over a year of meetings, visits and half-promises, we feel very let down.’
You can read the rest of Benton’s moving piece here.