ME/CFS

For people with severe Long COVID, medical care is out of reach

Health

·

By

Kaelyn Lynch

–

September 17, 2024

Getting medical help for any severity of Long COVID is challenging. The disease can manifest as over 200 different symptoms, ranging in severity from mildly impacting quality of life to completely debilitating. For those in the most severe categories — who are barely or completely unable to leave their beds — accessing quality care is…
Research updates, September 3

Science

·

By

Miles W. Griffis

–

September 3, 2024

Research updates for the week of September 3 include the role of blood clots in Long COVID, how the disease impacts people with preexisting disabilities, and blood tests for people with ME.
Should people with Long Covid be donating blood?

International, Investigations, Policy & Advocacy, Science

·

By

Miles W. Griffis

–

May 14, 2024

In the fall of 2009, researchers at a lab in Reno, Nevada, said they detected a potentially transmissible virus in the blood of people with myalgic encephalomyelitis (ME). The study led the American Red Cross to ban blood donations from people with ME. The study was retracted in 2011 and the Red Cross guideline was…
#MEAction launches campaign to educate healthcare providers about Myalgic Encephalomyelitis

Health, Policy & Advocacy

·

By

Betsy Ladyzhets

–

May 14, 2024

#MEAction, the nonprofit organization advocating for people with myalgic encephalomyelitis (ME), has launched a campaign to educate healthcare providers about the disease, collaborating with medical schools across the U.S. The education campaign, called “Teach ME, Treat ME,” kicked off last week in time with #MillionsMissing 2024, an outreach event for ME that takes place in…
Letters to the editors: Sen. Sanders’ “moonshot” legislation

Commentary

·

By

Betsy Ladyzhets

–

April 23, 2024

Today, April 23, is the last day to submit comments to Senator Bernie Sanders’ office and the Senate Health, Education, Labor, and Pensions (HELP) Committee about draft legislation proposing $10 billion in funding for Long Covid research over the next 10 years. Following The Sick Times’ story last week about this proposed bill, we received…
How patient-led research could speed up medical innovation

Science

·

By

Betsy Ladyzhets

–

April 2, 2024

Compared with mainstream medical research that tends to focus on finding biological causes and disease cures, patient-led work is more often rooted in what’s immediately relevant to patients’ daily lives, like identifying symptom triggers or relievers. But the approach faces challenges — particularly a lack of funding and other research resources — as scientific institutions aren’t set up to…
Errors, omissions, potential bias: Why some ME experts are calling for a retraction of the NIH intramural study

Investigations, Science

·

By

sick times

–

March 19, 2024

After NIH’s intramural ME study was published last month in the journal Nature Communications, some patient-advocates and experts in the ME community say their worst fears about this $8 million, eight-year research project were realized. In interviews with The Sick Times, advocates and experts shared concerns about which patients were included in the research, the…
Research updates, February 27

Science

·

By

Miles W. Griffis

–

February 27, 2024

Research updates for the week of February 27 include a major study about ME, persistent SARS-CoV-2 infections, and the blood brain barrier’s connection to brain fog.
#MEAction co-founder Beth Mazur passes away

Policy & Advocacy

·

By

Miles W. Griffis

–

December 26, 2023

On Friday, the ME advocacy group #MEAction shared that their co-founder, Beth Mazur, passed away after living with myalgic encephalomyelitis (ME) for 15 years. “She was a selfless beacon of hope and light for so many in our community and she demonstrated an unwavering commitment to the cause,” #MEAction wrote on their website.