Brian Shuell @Bshuell@qoto.org
- @Bshuell
Husband, Father, former software developer with myalgic encephalomyelitis, Living a limited life, missing from many places. #mecfs #pwme #longcovid #neisvoid
#MyalgicEncephalomyelitis #MyalgicE
Joined Nov 2022
Four years ago today, I testified in front of the Michigan State Senate on Health Policy about #MECFS. This was about 6 months before the first case of COVID-19 in Wuhan. We had no idea of the storm of #LongCovid that would follow.
#mecfs #LongCovid
Watch "Post Exertional Malaise (PEM)" on YouTube
https://youtu.be/OoCVQWPQwL4
#mecfs #LongCovid
Gaslighting Long Haulers | OpenMind Magazine
https://www.openmindmag.org/articles/gaslighting-long-haulers
“Researchers found herpes viruses … circulating in unvaccinated patients who had experienced COVID. In patients with chronic fatigue syndrome, antibody responses were stronger, signaling an immune system struggling to fight off the lingering viruses,” Fortune reported.
“Such non-COVID pathogens have been named as likely culprits behind chronic fatigue syndrome, also known as myalgic encephalomyelitis.”
COVID-19 Could Reactivate Chronic Fatigue Symptoms, Study Says
https://www.webmd.com/a-to-z-guides/news/20221227/covid-19-could-reactivate-chronic-fatigue-symptoms-study-says
T-Cells causing an inflammatory response near the olfactory epithelium. This sounds a lot like the hypothesis that have been proposed for years for #mecfs.
Author Ryan Prior on #longcovid and #mecfs:
"I felt like a demon had hijacked my nervous system. I felt like my mitochondria, which create energy at the cellular level, had failed. The lifeforce animating me was fleeting, as though I was a mass of dead flesh rather than a living organism."
"In the 1980s, many people in the medical community treated chronic fatigue syndrome as a punchline. Some doctors dismissed patients’ debilitating symptoms, including crushing fatigue and crashes after exercise, as figments of their imaginations. Media outlets even dismissively nicknamed the condition “yuppie flu,” since many cases were reported among affluent white women."
https://time.com/6240058/post-viral-illnesses-common-long-covid/
"Because so many physicians are uninformed about ME, some at long COVID clinics prescribe therapies that have been proven to be harmful to patients who experience post-exertional malaise (PEM). Graded exercise therapy (GET)—a controversial form of physical therapy for ME and long COVID which slowly increases exercise over time— worsens patients’ symptoms who experience PEM. 'Graded exercise therapy implies that you can exercise yourself into fitness and resolve the illness,' Bateman says. 'When in reality, that’s not the case.'"
https://www.popsci.com/health/long-covid-care-chronic-illness/
Is the a "sprint" in medical research like there is in software development? If so, we need one for #mecfs and #LongCovid
“'Helping people is my passion, yet I can’t do that anymore': how long COVID ended the career of a young paramedic"
"KEY POINTS
Annual medical costs associated with long Covid are estimated to be around $9,000 a year, on average.
Long Covid is a chronic illness that results from a Covid-19 infection. There are hundreds of potential symptoms, which can be debilitating for many people.
Treatment largely consists of symptom management, since there’s no known cure for long Covid, medical experts said."
"'It’s a moment where the public and the medical community are realizing that this is real. This is what happens after certain infections,' said Akiko Iwasaki, a professor of immunobiology at Yale University and a co-author of a review article on covid-19-related cognitive impairment.
'I think it's their time to be recognized,' she said."
#longcovid
#mecfs
#pwme
https://www.washingtonpost.com/wellness/2022/11/28/long-covid-brain-fog/
"According to the CDC, out of all the American adults who have had COVID — and that's a lot of us — one in five went on to develop long COVID symptoms. While so many are struggling with this new disease, it can be hard for people to know how to take care of themselves.
The Long COVID Survival Guide aims to give people struggling with long COVID practical solutions and emotional support to manage their illness. Host Brittany Luse talks to Fiona Lowenstein, editor of the guide, and Karla Monterroso, one of the contributors, about the difficulty of getting diagnosed, navigating long COVID and creating long-term collective care."
New York Magazine Article Biased and Riddled with Errors | Occupy M.E.
https://occupyme.net/2022/11/22/new-york-magazine-article-biased-and-riddled-with-errors/
ME/CFS and Long COVID: Q&A With the CDC's Dr Jennifer Cope
Author Spotlight: Fiona Lowenstein, Dona Kim Murphey and "The Long Covid Survival Guide"
Nov 22, 2022 10:00 AM
#LongCovid #mecfs #LongCovidKids
https://us02web.zoom.us/webinar/register/WN_rBZZcTFCQzq1H7ru7y4Epg
Is anyone creating a #LongCovid documentary film similar to how #unrest was created for #mecfs ?
Reposting a photo of my little friend. This time, I've used the caption feature for the benefit of the visually impaired. Will remember to do this in the future. #millionsmissing #mecfs #pwme #LongCovid
- @Bshuell
Husband, Father, former software developer with myalgic encephalomyelitis, Living a limited life, missing from many places. #mecfs #pwme #longcovid #neisvoid
#MyalgicEncephalomyelitis #MyalgicE
Joined Nov 2022
