Long COVID and ME/CFS folks, and disability allies:
I have something you can do in 15 minutes that will be very helpful to those of us with these disabilities!
The Canadian working group putting together recommendations for Post-COVID Condition (PCC) have released some bad recommendations regarding exercise as a treatment for Long COVID and cognitive behavioural therapy (CBT) to treat Post-Exertional Malaise (PEM).
The UK just recently managed to get these recommendations out of the NICE guidelines for ME/CFS, and we should try to prevent them from getting embedded in the Canadian ones for Long COVID.
They have a survey out until Nov. 27 at 11:45pm EST asking for public input. If you can manage it, please fill out the survey explaining why these are both bad recommendations. The survey is open to people internationally, and anyone interested in the topic. Please mark #2 and #8 as "Major Concerns" and provide a sentence or two explaining why (in your own words).
Draft Recommendation #2 - recommends exercise as a treatment for Long COVID, and only briefly mentions the existance of post-exertional malaise (PEM). Given how many people with long COVID meet the diagnostic criteria for ME/CFS, this is entirely backwards. PEM should be evaluated first and regularly thereafter and exercise should only be suggested once everyone is confident that PEM isn't present.
Draft Recommendation #8 - Recommends CBT as a treatment for PEM. This is recommending a psychological treatment for a physical issue, which is inappropriate. It also contributes to the long history of treating the fatigue in ME/CFS as self-inflicted. And is an activity that can also worsen or cause PEM.
The recommendations and links to their evidence charts are inside the survey itself, or you can open the PDF link on the first page and write your answers before copying them into the survey.
It's a valid question many people earnestly think about â even the very cautious.
'it becomes important to ask: "what does the data actually say?"'
Quoting a few good answers from a thread:
"Covid left me disabled in 2020. I know with 100% certainty that I am not wrong about Covid. I live with the proof every minute of every day for the rest of my life."
"The insurance companies and government statisticians care, or rather they have taken an objective interest." > https://fred.stlouisfed.org/series/LNU01074597 > https://insurancenewsnet.com/innarticle/insurance-industry-coalition-forms-non-profit-to-study-excess-mortality
"There are parallels between how governments are responding to COVID-19 and how they responded to tobacco back in the day.
âit would be a mistake to assume governments would automatically protect people from a public health threat in the face of more immediate economic considerationsâŚthere would be resistance to change that might be costly until evidence to justify it was overwhelming.â" > https://johnsnowproject.org/insights/merchants-of-doubt/
"I suspect most of us entertain this thought from time to time, especially when itâs this absurdly difficult and lonely to maintain a Covid Conscious lifestyle.
But itâs important to remember that history is littered with people making terrible choices en masse: with handling past pandemics, the holocaust, slavery, witch burnings, etc. Hell pretty much everyone used to smoke and putting lead in everything was A-ok. Just because a lot of people believe something doesnât mean theyâre right. So it becomes important to ask what does the data actually say?
The research and the statistical data on this subject paint an ugly but fairly quantifiable picture by which we can gauge our understanding of the situation and our choices in response to it. Read the science. Look at the data on things like Long Covid. There are also many of us who have already had our health absolutely ravaged by this virus or lost loved ones to it etc., and everyone in that position has first hand evidence for how dangerous this virus is.
Itâs tremendously difficult to swim against the current like we are and self-doubt is natural in those conditions, but thatâs when seeking out factual information on the subject is the best course of action."
"But what it all comes back to for me is - say we're wrong, and covid is a big nothingburger and lockdowns are the root of all evil. Ok, well, what I'm doing is acting on the best information available to me at this time to protect my family. I can't regret that. I will always be able to look my kids in the eye and say "I did my best with what I had."" ...
So if we're wrong - well, we wore masks, changed our social habits, reduced our consumerism and our contribution to the destruction of our planet, and reduced how often we got sick. None of those things are bad. If they're wrong, they and their kids are screwed. I'd rather err on the side of caution.
In the current COVIDâ19 pandemic, wearing masks and hand disinfection are widely adopted hygiene practices. Alcoholâbased sanitizers are com
The figures from this are amazing:
...to avoid inhaling the sanitizer vapor, the volunteers placed hands on one side of the body and turned the head to the opposite side, as shown on the right in Figure 2. The second practice was named as the vaporâavoiding hand disinfection.
Researchers Found Even Lower-Performing Masks Were Protective
Published May 31, 2024
Any common face mask provides significant protection against the virus that causes COVID-19, but N95 masks are most effective at slashing the amount emitted by infected people, according to a University of Maryland-led study released Wednesday.
So-called âduckbillâ N95 masks scored highest in the study, which measured the exhaled breath of participants who were tested both masked and unmasked to measure comparative outputs of SARS-CoV-2. The inexpensive masks, which have two head straps and a horizontal seam, captured 98% of exhaled virus, according to the study published in eBioMedicine.
The researchers also found thatâin what might come as a surprise to manyâcloth masks outperformed the specific brand of KN95 mask that was tested. Surgical masks brought up the rear in performance out of the four types, but even they blocked 70% of the virus, the tests showed. (To reflect the general public's use of masks, study volunteers were not fit-tested for their masks or trained how to properly wear them.)
âThe research shows that any mask is much better than no mask, and an N95 is significantly better than the other options. Thatâs the No. 1 message,â says the studyâs senior author, Donald Milton, a professor of environmental health and a global expert on how viruses spread through the air.
The article above didn't link to the study, so I found it, and it's open access!
Relative efficacy of masks and respirators as source control for viral aerosol shedding from people infected with SARS-CoV-2: a controlled human exhaled breath aerosol experimental study
Well lads, I've been suffering from Long COVID for over a year now. My life is at a complete standstill. I'm 25 years old and I'm too sick to go back to school, I can't work, I had to move back in with my parents and I'm still stuck here.
Here are just a few things I wish people knew about Long COVID, including things I didn't know myself until I got it.
COVID destroys your immune system. Yes, even if you don't have Long COVID. Are you getting sick more often now? When you get sick, does it last longer? There are many studies showing that COVID causes t cell depletion, even in mild COVID cases! T cells are how your body remembers how to fight off infections you've had before so losing those cells? Bad news.
Your initial infection can be mild and you can still get Long COVID. Right from Yale Medicine, "Most people with Long COVID had mild acute COVID." (This is also a good link for a basic Long COVID overview).
There can be a gap of time between when you "get better" from the initial COVID infection to the onset of Long COVID symptoms. Some people get sick with an initial COVID infection and never get better. Some get better and then weeks or months later start developing Long COVID symptoms. Long COVID symptoms can even fluctuate over time, can go away for months and then suddenly come back.
So many people have Long COVID and don't realize it. Do you feel more tired lately but no matter how much you sleep, nothing helps? Is it harder to concentrate at work or school? Can you just not think like you used to? You could have Long COVID and not even know it. Even mild post-COVID symptoms are still Long COVID.
COVID can do anything to your body. Long COVID has over 200 recognized symptoms and can affect basically any part or system of your body. There is no one mechanism or cause of Long COVID which unfortunately also means there's no one cure either.
The effects of COVID are cumulative. Each COVID reinfection increases your chances of developing Long COVID. COVID is also affecting your body in other ways, yes, even if you're otherwise young and healthy! "Repeat COVID-19 infections increase risk of organ failure, death".
Once you have Long COVID, repeat COVID infections will make your symptoms worse. "80% [of Long COVID patients] saw their symptoms worsen [from reinfection]. In 60% of people who were in recovery or remission from Long COVID, reinfection caused a recurrence of Long COVID."
There is a lot more I want to say about Long COVID but I want to keep this post at least somewhat manageable to read. Like how when COVID is contracted during pregnancy, those COVID-exposed fetuses have a 6.3-fold increased risk of motor developmental delays, or that another study found 50% of babies exposed to COVID in utero had developmental delays.
You need to keep caring about COVID, for others around you and also for yourself even if you're "healthy". Everyone is at risk. And don't forget 40-60% of COVID infections are asymptomatic, which is why masking even if you feel fine is crucial. The only way right now to not get Long COVID is to not get COVID in the first place. It's not too late, if you've stopped masking it's never too late to start again! I know it's easy to get distracted by things in your life that seem more real than the possibility of getting sick some time in the future, and the peer pressure to not mask can be intense. But it only feels less real or less important until your entire life is having Long COVID. Trust me.
I know this is a complicated issue, many people can't afford to stay home when sick even if they want to because of their jobs, there are disgusting policies trying to ban wearing masks, but please if you can. Keep masking. Masking works, masking saves lives.
This post got a bit longer than I wanted so below the cut is a non-exhaustive list of my Long COVID symptoms and some of my experiences as one of the "healthy young people" who got "unlucky". cw brief mention of suicidal ideation.
Welcome to the Thunderdome that is my body with Long COVID. Keep in mind these are just my experiences and symptoms, Long COVID can cause any range of symptoms at varying severities.
Dysautonomia: Exercise intolerance, Post-Exertional Malaise (PEM), fatigue, and heat intolerance. What do those things mean? Here's some specific examples. Absolutely terrible circulation I am so cold all the time but also, if I get a little too warm I will pass out. Eating hot food makes my heart rate spike, I sweat, my body feels heavy. Blood pooling and pins and needles in my feet when I walk. Don't even think about exercising past walking, it's impossible. I used to work out an hour a day 4 times a week and now walking up one flight of stairs makes my heart pound and I can't breathe. Can't take even just warm showers anymore or I will pass out. Heat rashes from being in the sun for 10 minutes.
Digestive issues: Honestly too many to name but: constant bloating, extreme nausea, constipation, slow motility, lack of appetite, just so much cramping and pain. I lost 18 pounds from Long COVID, as someone who was already considered underweight their entire life, and almost had to get a shunt put into my chest to deliver nutrients because I was nearly completely unable to eat. For the first 6 months of Long COVID, if I could manage 600 calories a day, that was a good day.
Histamine intolerance: Oh boy. My worst symptoms, I don't even know where to start with it. If you know Mast Cell Activation Syndrome (MCAS) it's very similar. I can only eat 19 foods. If i eat a single bite of something not on that list, it's 48 hours of absolute hell. Coughing, migraines, itchy eyes, such extreme nausea I cannot even describe it, panic/feeling of doom, racing heart rate, derealization, rash, uncontrollable muscle tremors. I only learned about histamine intolerance 5 months into having Long COVID so before that, I was experiencing these symptoms nearly every single day. Terrifying isn't even a strong enough word to describe how it felt to experience all this and have no idea what it was, how to stop it, or if it would ever stop. Really dark times.
Neurological issues: More of that derealization. Inability to concentrate. Anxiety. OCD-like symptoms such as thoughts getting "stuck" in my head, repeating 24/7 completely unable to stop them, genuinely felt like my brain had cracked open and I had lost my mind. Constant dizziness like I'm on a boat.
Sleep issues: I sleep like garbage. I have insomnia, I wake up dozens of times every night and every single time I sleep I have intensely vivid dreams. I can't sleep longer than 7 hours total no matter how exhausted I am. It is exhausting. I'm exhausted, I'm so so tired.
And finally. Just. Really intense suicidal ideation. My body, my health, my entire life has been stolen from me because someone else decided my life was worth less to them than wearing a mask or staying home if they feel sick. Before I got Long COVID, I was preparing to go to South Korea to teach English, then on to a PhD in neurolinguistics, I was supposed to meet my long distance partner and had already booked plane tickets when I got sick. All of that has been destroyed.
Most of us with Long COVID are stuck in a cycle of being extremely sick, then if you're lucky you'll slowly get better over months, just to get reinfected and go right back where you started or worse. Honestly, I'm not scared of dying from COVID. I'm scared of living for a long time, suffering from Long COVID the entire time. This isn't living.
I don't know how to end this now. I'm still fighting, I'm trying experimental treatments, I'm not giving up yet. I hope everyone reading this stays healthy and well.
They suggest their discovery is important for the understanding of brain fog and cognitive decline â difficulty with thinking, memory or con
Researchers have discovered that leaky blood vessels, together with a hyperactive immune system may be the underlying cause of brain fog in people with long covid.
They suggest their discovery is important for the understanding of brain fog and cognitive decline â difficulty with thinking, memory or concentration â seen in some people with the condition.
It is hoped the findings will help with the development of treatments in the future.
To Summarize:
Long Covid sufferers experience symptoms like forgetfulness and concentration issues due to leakiness in brain blood vessels, according to research findings.
Scientists from Trinity College Dublin and FutureNeuro confirm that Long Covid patients with brain fog have disrupted blood vessels in their brains, making the neurological symptoms measurable.
Blood vessel leakage in the brain, along with an overactive immune system, may be the key drivers of brain fog in Long Covid patients, leading to potential changes in understanding and treating post-viral conditions.
I can't find a single right-wing news source covering this.
âduring the pandemic-â âback when covid was-â it is still here. covid is still here and it still kills people and it still disables people and it does so at an incredibly fast rate because nobody fucking cares anymore and nobody wants to acknowledge it anymore but how can you just ignore it isnt anyone else seeing this . the fucking measles is back bc everyones immune systems are fucked from repeated covid infectons because no one fucking cares anymore. why dont people care.
why is the vast majority of society pretending the pandemic is either completely over or never happened What the fuck is going on !!!!!!!! what the fuck is ggoing on like actually. i feel crazy. How are you going to ignore The fucking plague thats killed and disabled millions. can anyone fucking see this. Oh my god.
went to bed because i was kind of losing it . woke up and im still mad just in a calmer and more actionable way . i think part of what upsets me so much is that it feels like gaslighting. it straight up feels like gaslighting. in the genuine, non-meme sense of the word. the cdc stopped tracking cases and then told us the pandemic was over. doctors don't wear masks and get all offended if you ask them to. grown adults don't cover their coughs. this isn't normal. none of this is normal. society & the cdc will try and tell you it's normal and it's not. and it feels like you're fucking crazy sometimes but you're not. the pandemic is real, it is ongoing, it is killing & disabling millions of people, and you're not crazy for still caring .
I'm hoping this flyer would help those that didn't already know the difference between masks, quality masks, and respirators, as well as some of the variety of options out there for quality, comfortable, breathable, snug-fitting masks & respirators!
Reblogs are tremendously appreciated, and please feel free to share this wherever you can! Print this, hang this up in your school, hang this up in your neighborhood, hang this up in public transportation, repost this, etc., etc., etc.!!!
We are collecting stories about Covid conversations to publish in an online anthology, and we want to hear from you. We know firsthand how d
We are collecting stories about Covid conversations to publish in an online anthology, and we want to hear from you. We know firsthand how difficult it is to talk to others about Covid mitigations, and how fraught these convos can be. We are aiming to collect stories from Covid-conscious people who have had these tough conversations and are willing to share some reflections. We want to create space for people to process feelings about these experiences, vent, reflect, and be heard. We also want to create space for all of us to learn from one another and process this ongoing collective trauma, this ongoing grief.
The deadline for submissions is Sunday, October 1, 2023!
The link was originally posted on Twitter.
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