Advocacy

COVID-19 Can Last for Several Months

06-08 Advocacy, Health, People

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

06-04 Advocacy, Health, People

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

06-01 Advocacy

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

See ME – Awareness Day Music Video

05-12 Advocacy, Events, People

‘See ME’ is a cover of the song Chasing Cars by Snow Patrol. The lyrics have been adjusted to reflect the lives of people suffering from ME/CFS. Many have become bed or housebound and live an isolated life between four walls. This song is to commemorate the millions missing who have disappeared from public life because of ME/CFS.

Created by Belgian artist Robin De Man and his son Seppe.

Using Art to Bring Visibility to ME/CFS

05-11 Advocacy, Events, People

Christina Baltais created some artistic collages for May 12th ME/CFS awareness day.  Lives Capsized – “ME/CFS can strike any age, gender (most commonly affects women), and ethnicity (people of colour more likely to be affected). It can take down even the strongest and most robust in our communities. It’s a disease that does not discriminate; overturning the lives of millions and their families worldwide.”

Source: Using Art to Bring Visibility to Myalgic Encephalomyelitis | The Mighty

How to Navigate Disability Insurance with ME/CFS

04-21 Advocacy, People

Presented by Solve ME on April 20, 2020, this online education workshop includes a conversation between legal and medical experts in the field as they share their advice on applying, appealing, and documenting your case for disability insurance with ME/CFS. Board Certified Patient Advocate, Sharon Stevenson, DVM, PhD, moderates with roundtable speakers: Lucinda Bateman, MD (Bateman Horne Center), Christopher Snell, PhD (Workwell Foundation) and Moselle C. Leland (Law Offices of Judith S. Leland).

Solve ME Advocacy Week 2020 Congressional Education Video

04-20 Advocacy, Events

Solve ME announced: “In our new digital format, we’ve created a video to replace our printed congressional educational materials. Share this video with your Representatives to inform them of important ME/CFS needs.”

Share this video with your local state representatives this week and help make a difference!