NIH VideoCast – Beyond the Symptom: The Biology of Fatigue

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.

The entirety of the workshop can be streamed on the links below:

NIH VideoCast – Beyond the Symptom: The Biology of Fatigue (Day 1)

NIH VideoCast – Beyond the Symptom: The Biology of Fatigue (Day 2)

Navigating Public and Private Disability Insurance with ME/CFS

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 Pacific

U.S. Dial-In: (609) 746-1155; Access Code: 915110#

£3.2m Funding for DecodeME, the Largest Ever ME/CFS DNA Study

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.”

Source: Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study – DecodeME

COVID-19 Can Last for Several Months

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

Researchers Warn COVID-19 Could Cause Debilitating Long-term Illness in Some Patients

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.

Source: Researchers warn COVID-19 could cause debilitating long-term illness in some patients | The Seattle Times

Feinstein, Markey, and Colleagues Call for ME/CFS Research Funding in Upcoming Coronavirus Relief Package

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.

Source: Feinstein, Markey, Colleagues Call for Medical Research Funding in Upcoming Coronavirus Relief Package – Press Releases – United States Senator for California