Brian Shuell @Bshuell@qoto.org

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

https://www.sfchronicle.com/health/article/chronic-fatigue-COVID-disease-17512173.php?utm_campaign=CMS%20Sharing%20Tools%20(Premium)&utm_source=share-by-email&utm_medium=email

I'll share a few quotes in the replies.

@mecfs
#LongCovid #MEcfs #PwME #PwLC #MedMastodon #MyalgicEncephalomyelitis

On #InternationalDayOfDisabledPersons, please remember that not all disabilities are visible.

#IDPWD2022 #InternationalDayOfPersonsWithDisabilities #IDPWD #IDDP2022

🚨 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/

"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

The only way Elon is going to put Apple out of business is if he buys it.

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

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

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

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

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)

Does anyone have links to any studies or other valuable data on nattokinase and serrapeptase efficacy and best dosages for long covid treatment?

#Introduction I have severe #ME made significantly worse by advice based on the old 2007 NICE guideline. I am mostly bedbound and spend my time raising awareness and making videos. This short explainer about #ME is the last one I made.

I also play Chess and Words with Friends to pass the time.

#MECFS #CFS #MyalgicE #PwME #ChronicFatigueSyndrome #MyalgicEncephalomyelitis

"Symptoms made worse due to physical or cognitive exertion (N = 1534)" in Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)

From:
"Assessment of Post-Exertional Malaise (PEM) in Patients with #MyalgicEncephalomyelitis (ME) & #ChronicFatigueSyndrome (#CFS): A Patient-Driven Survey" (2019) by a Leonard A. Jason team
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MEcfs #MyalgicE #PwME #MEeps @mecfs #PostExertionalMalaise #PostExertionalNeuroimmuneExhaustion #PostExertionalSymptomExacerbation #PEM #PESE

Rebirth. Since getting #mecfs I've not been more than a 100 metres from home or a vehicle in 2 years. Surprisingly it's not been the end of the world for me. It's a different perspective & good moments like this morning are big wins in the lottery of life. #photography #LandscapePhotography #mecfs #disability