Not a placebo-controlled trial, just an open-label study
“67% reported improvement in the low-dose naltrexone group compared with 61% taking amitriptyline and 41% receiving physical therapy alone. Patients taking duloxetine only reported improvement in 35%”
“in this cohort, there was a significant risk participants under-reported, rather than over-reported, cognitive difficulty that was detected on NP [neuropsychological] testing”
2/
“While HGS [hand grip strength] was similarly impaired in both PCS and ME/CFS patients, the associations between HGS and the severity of symptoms and disability revealed striking differences. (contd)”
Today the first article I wrote in bed was published. It responds to the recent recommendation of GET for PEM by prof Fedorowski et al. In our piece of correspondence, we explain why GET should not be recommended for pw PEM.
Update I saw today from somebody in the #MECFS community. Please highlight widely.
"I inquired about the trial a couple of weeks ago, one of the coordinators mentioned that they only had 11 people participate so far, their goal is to recruit roughly 100. The location is very easy to get to via public transit, the trial location is set on the Upper East Side (a few blocks away from the 96th St. subway station). If you are in the New York Metro Area, please consider participating."
#COVID Isn't Going Anywhere. Masking Up Could Save My Life
Alice Wong writes about trying to keep safe in the pandemic as a high-risk person. "The normalization of repeated infections, preventable deaths, & anti-science propaganda is tearing the fabric of society, with the most marginalized hanging by a thread”
#LongCOVID & ME/CFS have overlapping symptoms, yet many studies overlook the proportion of individuals with long #COVID who meet ME/ #CFS criteria. Read more about current estimates of the proportion of individuals with long #COVID19 who meet #MECFS criteria:
https://longcovid.physio/long-covid-video-series/pacing
It’s Day 17 for me but Day 16, yesterday, noticed although I can do more than forced physical rest (is it really resting if you’re still engaging your mind though? b/c you refuse to meditate & you can’t sleep?) my physical limitations definitely exist
All I did was a bit of vacuuming in AM & drafted a simple pocket pattern on floor in the afternoon & was absolutely knackered
The #sarscov2#CovidPapers about muscles recently making rounds makes total sense & I TAKE RESTING SERIOUSLY yet still…
“Our analysis suggested an improper crosstalk between the cellular and humoral adaptive immunity in #LC, which can lead to immune dysregulation, inflammation and clinical symptoms associated with this debilitating condition”
An essay inspired by Giorgia Lupi's recent high profile article in the NY Times, also detailing the author's experiences. "It is September, 2022, the beginning of the waiting rooms. I'm glad I don't know what's coming. The very first doctor that I see says the pain I feel is anxiety”
This will be my ongoing🧵on exercise b/c I need to organize dammit as can’t find anything
In 2020 recall reading a tiny blip of an article about exercise post Covid & WILL eventually hunt it down
Swore it was WP but searching “Washington post, Covid exercise” is getting me mostly pro exercise articles🤦🏻♀️ such as this gem from my favorite 🙄🙄Covid resource Leana Wen /s
Written in 2023 but 2024, they are FINALLY pointing out obvious truth
Good piece by a #longcovid and #mecfs patient @longcovid
Quotes:
This is Long COVID, a multi-system, multi-organ complex chronic disease with no diagnostic, approved treatment or cure.
...
Employees who are not recovering are falling out of the workplace
....
we would be investing in solving the root cause with a focus on biomedical treatments and the objective of curing all infection-associated chronic diseases
David Tuller DrPH Interview with journalist Ed Yong
"Last month, Yong wrote an opinion piece for The New York Times in which he discussed what he learned as a #journalist from covering #longCovid. He & I spoke earlier today about the Times piece, how he came to grasp the seriousness of long #Covid, & related stuff." 35 minutes.
4/
From @anilvanderzee
“Besides the reference to the Daniels paper, this seems to be quite helpful. There were some other things but overall not bad at all. Great to see more papers on psychological support and pacing” https://t.ly/0NkaF
Eric Topol OpEd: Opinion: “The U.S. is facing the biggest COVID wave since Omicron. Why are we still playing make-believe?”
I appreciate his concern, but in Sept 2021, he decried people like me for “pervasive pessimism.” Then, amid the Omicron surge, I asked if he regretted that, and he blocked me. Like so many public health experts, if he'd maintained a cautious stance rather than leaping so quickly to optimism, it's possible more people would've remained careful. https://www.latimes.com/opinion/story/2024-01-04/covid-2024-flu-virus-vaccine
@augieray@birdpoof
Deaths from Covid are important to note, but I also want to know how many people are still sick or disabled by post Covid conditions?
That would include patients who got ME/CFS after Covid as well as patients with other conditions that fall under the Long Covid umbrella term.
(I've seen people use this term in different ways)
#IDMastodon#cardiomastodon 🫀 Evidence is emerging that endothelial dysfunction is present in patients with #PASC/ #LongCovid & may contribute to persisting symptoms & symptoms could also fluctuate or relapse over time .The most symptoms: #angina (100%),fatigue (80%), dyspnea (80%) ,palpitation (50%), concentration impairment (50%), muscle pain (30%), brain fog (30%). Sleeping & visual disturbance (10%). Around 70% of the patients were suffering from 4 or more types of symptoms
assuming JN.1 & what will say is… was as prepared as possibly could be
took 15 months advance to start my 4 shot #novavax regime,
markedly changed diet #microbiome since ‘22 to include ⬆️fiber& took so many supplements went through a months supply between me & my spouse in week
forcing myself to stay in🛏️even tho not comatose😴like prior infections
This variant spared my gut, is more respiratory but am doing great considering
However this def going to kill a lot of people who were less prepared & exposing themselves to everyone’s air seeding multiple variants at the same time #CovidOrgy
My spouse had 3 Pfizer, 3 Novavax old formulation & 1 XBB booster that imo was taken a week too late..🙄not my fault as I tried but miscommunication🙄🙄
Perhaps my 2 prior infections, 2020🇮🇹🇨🇳 & 2022 BA1 helped? but this was his first & freaked out when realizing his head was throbbing. It was an entire sh*tshow… had I known it was Covid all along🤦🏻♀️
Where the issues will happen for most people is from the persistent brain inflammation & their desire to get back to normal treating this like a cold
I’m bored out my mind & am about to bring my sewing machine into the bed😂
Covid comes in waves. It always has. You feel fine so you exert yourself thinking you’re better but you need full bed rest at minimum 5 days
I’ve gotten up to cook, but was peeling🧄& chopping🧅in bed yesterday watching a movie
And an anti-inflammatory diet is super important
Those health gurus… w/books, I like them BUT they are so wrong about believing their microbiome autophagy fasting diet will mean they will escape unscathed
#sarscov2 PLUS working out!
That’s right… do that cardio for your heart & health! Super good #immunityBoosting heart healthy workout! It’s New Years & that’s what we do! Rah rah rah ruh roh… #cardiacArrest#longCovid#pasc
Am I a little sad I can’t workout again for another 12 months plus? Actually a little bit but I don’t want to die so… or shorten my already shortened lifespan
I’m being forced to watch Netflix b/c can’t do anything else whatsoever & was watching Singles Inferno Season 2🙄🤷🏻♀️&🇰🇷from my visits used to not be like that… like NOBODY used to exercise. Girls couldn’t even pick up their luggage on their own at the luggage carousel! I’d be like, move, let me do it😂 Yeah, nope nope nope. I will never ever lift anything again as I’m officially 107 thank you very much
They, along w/🇺🇸 are about to go through some stuff…
“we demonstrated mild #COVID19 patients experienced asymmetric bilateral glymphatic function decline after four months of recovery, & the decrease in glymphatic function was more obvious in older recovered patients”
Zojuist #LongCovid in nieuws bij #EenVandaag: (eindelijk) start Nederlands onderzoek... particulier gefinancierd 👏🏼Aanvulling: het zijn niet alleen 90.000 bedlegerigen. Daarnaast vele 100.000-en die in meer of mindere mate beperkt zijn in hun leven.
Een goed leesbaar Overzichtsartikel dat aansluit op het nieuws van vorige week: hoe gaat het nu verder met het #LongCovid onderzoek (via Stichting PostCovid versneld opgestart en verder ook door Zonmw gesubsidieerd)? Met uitleg van 4 soorten problemen en een lijst behandelopties #PostCovid#PASC#wetenschap@longcovid