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Wisdom 4 ME |
ME/CFS News & Advocacy |
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.
On Saturday, October 23rd, David from the ME/CFS Phone Support Group will be co-hosting a Disability talk with Long-Term Private Disability and ERISA Attorney Andrew Kantor and Social Security Disability attorney Moselle Leland for individuals with ME/CFS as well as individuals with Long Haul Covid.
Saturday, October 23, 6:30 – 8 PM Eastern
3:30 – 5 PM PacificU.S. Dial-In: (609) 746-1155; Access Code: 915110#
Researchers from Vall d’Hebron, the Universitat Autònoma de Barcelona (UAB) and the Universitat Politècnica de Catalunya BarcelonaTech (UPC) recently performed a study which assesses the use of a mobile app to explore heart rate variability (HRV) and whether it is associated with symptoms of Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).
The Biden administration moved Thursday to grant 323,000 people who are severely disabled automatic federal student loan forgiveness to the tune of $5.8 billion, setting the stage for reforms to a process that is widely criticized as cumbersome and onerous.
Source: Biden forgives student loans of severely disabled borrowers – The Washington Post
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
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.
Senator Dianne Feinstein (D-Calif.) joined Senator Edward J. Markey (D-Mass.) and a bipartisan group of their colleagues to call on Senate leadership to prioritize medical research funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in any upcoming coronavirus relief package. Viral outbreaks, similar to the current coronavirus pandemic, have triggered an increase in ME/CFS patients in the past. Action is needed to prepare for a potential wave of post-coronavirus patients with ME/CFS like symptoms. The National Institutes of Health (NIH) plays an indispensable role developing methods to properly diagnose and treat ME/CFS patients. By increasing medical research funding for ME/CFS, Congress can equip the health care system with the tools needed to effectively respond to the coronavirus pandemic ensuring no patients are left behind.