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Wisdom 4 ME |
ME/CFS News & Advocacy |
“Many patients are coming back to the clinic a year and a half after having COVID-19 and some of them are developing onset diabetes and heart disease. We lump all of these experiences under long COVID but it’s unlikely to be just one thing,” – Dr. Ziyad Al-Aliy
We assemble a panel of experts to discuss long COVID and ask listeners to share their experiences.
Source: Vaccination Nation: The not-so-long odds of long COVID | 1A
In September 2021 the NIH hosted a virtual workshop entitled Beyond the Symptom: Biology of Fatigue to bring together individuals who do research on fatigue, health care providers who see patients with fatigue, and individuals who have fatigue and patient advocates. This workshop was a joint workshop of the NIH Blueprint Neuroscience Research Program and the Sleep Research Society.
This article explores the connection between long Covid and possible co-infections such as EBV. In one study, over 73 percent of COVID-19 patients who were experiencing long Covid symptoms were also positive for EBV reactivation.
Source: Long COVID Might Be The Manifestation of a Different Virus Reawakened in The Body
Children like Will Grogan continue to suffer from debilitating fatigue and extreme cognitive impairment long after a Covid-19 infection. Medical science is still no closer to a solution.
Source: ‘This Is Really Scary’: Kids Struggle With Long Covid – The New York Times
How renowned scientist Ron Davis is fighting to cure his son’s chronic fatigue syndrome, and why COVID patients may benefit.
Source: A geneticist’s biggest challenge: Curing his own son | Health | Al Jazeera
Co-Principal Investigator Dr Luis Nacul, CureME Biobank, London School of Hygiene & Tropical Medicine, says: “Unlocking the genetic susceptibility to ME/CFS is a key part of understanding what causes ME/CFS and the disease mechanisms involved. This, in conjunction with other biomedical research into ME/CFS, should finally pave the way to better diagnosis and the development of specific treatments for this debilitating disease.”
On march 17, a day after LeClerc came down with her first symptoms, SARS-CoV-2 sent Fiona Lowenstein to the hospital. Nine days later, after she was discharged, she started a Slack support group for people struggling with the disease. The group, which is affiliated with a wellness organization founded by Lowenstein called Body Politic, has been a haven for long-haulers. One channel for people whose symptoms have lasted longer than 30 days has more than 3,700 members.
Source: Thousands Who Got COVID-19 in March Are Still Sick – The Atlantic
The long-term illnesses that can follow viral infections can be devastating — and are devastatingly common. In 2015, the nation’s top medical advisory body, the Institute of Medicine, estimated that between 800,000 and 2.5 million U.S. residents live with the illness or illnesses awkwardly named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). An estimated three-quarters of these cases were triggered by viral or bacterial infections.
Noting that studies indicated the virus is able to spread throughout the brain including the hypothalamus, Moldofsky proposed the virus had produced a chronic neuroinflammatory state affecting sleep, pain sensitivity and energy levels. That hypothesis, of course, is identical to similar ones proposed for ME/CFS and fibromyalgia.
Source: Will COVID-19 Leave An Explosion of ME/CFS Cases in its Wake? | simmaronresearch.com