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
Brian Shuell
boosted
Brian Shuell
boosted
In case you missed it, article about ME/CFS from the San Francisco Chronicle:
A long-hidden disease is pulled from the shadows by its cousin, long COVID
I'll share a few quotes in the replies.
@mecfs
#LongCovid #MEcfs #PwME #PwLC #MedMastodon #MyalgicEncephalomyelitis
Brian Shuell
boosted
On #InternationalDayOfDisabledPersons, please remember that not all disabilities are visible.
#IDPWD2022 #InternationalDayOfPersonsWithDisabilities #IDPWD #IDDP2022
@Wadingthroughtreacle as a #pwme, i would say any tools that help with ME may help with LC. Pacing, rest, etc.
Brian Shuell
boosted
RT @calirunnerdoc@twitter.com
Life with #LongCovid:
Today I’m seeing a concussion specialist. One who sees guys in the NFL. And I never got hit in the head. But have symptoms similar to traumatic brain injury victims. Three years after infection.
Wear a mask.
🐦🔗: https://twitter.com/calirunnerdoc/status/1598347755964940289
Brian Shuell
boosted
🚨 In a new study, recent Epstein Barr Virus reactivation (EA-D IgG) was most strongly associated with fatigue in #LongCovid patients. https://pubmed.ncbi.nlm.nih.gov/36454631/
“'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."
"Yale University researcher Akiko Iwasaki, Ph.D., says immune profiling shows how Long COVID patients have distinct features not found in control groups. These patients, who also exhibit elevated levels of exhausted T-cells, cause her to express surprise at skeptics."
#longcovid
Long COVID: Skeptics Are Wrong, Researchers Say | Middletown, CT Patch
https://patch.com/connecticut/middletown-ct/long-covid-skeptics-are-wrong-researchers-say
Brian Shuell
boosted
"Sky News analysis found that in the 20 yrs before the pandemic, there were just 2,007 new scientific publications on ME/CFS.
Over the same period... there were nearly 45,000 publications investigating the skin condition psoriasis and 114,000 on the topic of Parkinson's."
https://news.sky.com/story/how-long-covid-ruined-my-life-from-crushing-fatigue-to-brain-fog-12744444
Brian Shuell
boosted
The only way Elon is going to put Apple out of business is if he buys it.
"'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/
Brian Shuell
boosted
Word of the year is #gaslighting
People with #MECFS or #LongCovid are very familiar with being medically gaslit.
With so much of it going on in politics, media & medicine, it’s no surprise that gaslighting is the most searched word.
https://www.abc.net.au/news/2022-11-28/merriam-webster-word-of-the-year-2022-gaslighting/101707808
Brian Shuell
boosted
The ketogenic diet “also stimulates a process called mitochondrial biogenesis…after people have done the diet for a while—months or years—many of their cells in their bodies and brains will have more mitochondria and those mitochondria will be healthier.” https://www.youtube.com/watch?v=xjEFo3a1AnI&t=3368s
Brian Shuell
boosted
One key insight from @ChrisPalmerMD@twitter.com’s Brain Energy: the ketogenic diet “stimulates two processes that relate to mitochondria. It stimulates a process called mitophagy, which is getting rid of old and defective mitochondria and replacing them with new ones.”https://www.youtube.com/watch?v=xjEFo3a1AnI&t=3368s
Brian Shuell
boosted
I've been very quiet on here as I've had a rough couple of weeks. Despite my condition worsening in general since April, I don't think I've crashed like this before. The worst part is the light headedness and brain fog, they really have been awful of late. I'm fortunate that I can still look after myself and be up and about, but everything is taking much longer and is more of an effort. Sending love into the world for all those going through the same. #MECFS #LongCovid
Brian Shuell
boosted
Update on my #LongCovid journey:
- It is stabilizing/slightly improving (some of the literature shows that)
- Mine is mild (as I have been able to work, but with end of day crash from the mental load & have to give up some workouts)
- Able to enjoy this planned trip to London as I am figuring out my spoons (can use my physical spoons here to get around on the tube & not exerting mental spoons as my husband has planned things)
@biomimic I d like to see data as well.
Brian Shuell
boosted
Does anyone have links to any studies or other valuable data on nattokinase and serrapeptase efficacy and best dosages for long covid treatment?
- @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
