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
Brian Shuell
boosted
Six year ago, I returned to NIH in Bethesda, where I started my career as a science writer, to be a patient in an ambitious study to understand the patho-biology of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
The study included 30+ researchers & many substudies, and was essentially a fishing expedition to understand what goes wrong to make us so sick (like bedbound-for-years sick). 1/
(photo by @Bether )
Brian Shuell
boosted
The thing we were warning about in 2020 is coming to pass exactly as we said it would. Having joined the ranks of chronically ill people whose symptoms overlap a number of syndromes with no set cause and no cure, people with long COVID are now being treated, just like all of us who had similar medical profiles before this pandemic. Refusal of care, lack of care, denial of our reported condition, suggestions of faking/malingering, the works.
From: @pixplz
https://mastodon.social/@pixplz/110249902171535804
Brian Shuell
boosted
👋I’m back. And I wrote about the current wave of attempts to downplay long COVID—less outright denial & more "it’s real but no big deal".
Except: it very much is. It’s a substantial and ongoing crisis that still demands our attention. 1/
https://www.theatlantic.com/health/archive/2023/04/long-covid-symptoms-invisible-disability-chronic-illness/673773/
Brian Shuell
boosted
US Politics, Long Covid and ME/CFS Advocacy
For my USA followers:
If reading so many stories about Long Covid leaves you asking, "How can I help?" then here's a suggestion:
Ask your Members of Congress to support the CARE for Long COVID Act. The link below goes to a "one click" tool that will send a message to your Senators and your Representative.
#LongCovid #MEcfs #SolveME #MillionsMissing
#USPol #USPolitics
#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.
Researchers launch trial to treat long COVID with drug used to block effects of opioids - ABC News
#LongCovid
https://www.abc.net.au/news/2022-12-21/long-covid-treatment-trial-drug-low-dose-naltrexone/101770626
This can also apply to people with #pwme as well as #LongCovid
How to support people with long COVID : Life Kit : NPR
https://www.npr.org/2022/12/09/1141967663/how-to-support-people-with-long-covid
Saw a story today about high blood pressure NOT being caused by stress but by "Repressed emotions."
Apparently, in the 21st century, no medical condition is too complex that it can't be blamed on emotions.
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."
@effies I listen to a lot of low-stimuli podcasts. Some of them more than once because I keep missing information because of brain fog.
Brian Shuell
boosted
It Isn't Just Long COVID. Post-Viral Illnesses Are More Common Than You Think
Quote:
SARS-CoV-2 is not unique in its ability to cause severe and widespread damage to the body. “There are a dozen other pathogens that are known to cause these post-acute-infection syndromes,” says Akiko Iwasaki, an immunobiologist at Yale University who recently co-authored a Nature review article on these conditions.
https://time.com/6240058/post-viral-illnesses-common-long-covid/
Link-thank to: @ntisec
"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
Brian Shuell
boosted
Solve M.E. announcement: "Lived Experience Taskforce"
They are looking for community partners who are:
* Affected by ME/CFS - patients or caregivers
* Affected by Long Covid - patients or caregivers
* From communities that have been historically economically and/or socially marginalized
Details here: https://solvecfs.org/solve-m-e-engages-new-community-partners-through-lived-experience-taskforce-let/
- @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
