Long Covid Unlikely To Explain Increase In People Too Ill To Work, Because That Would Be Too Obvious, Say Experts

My body’s need for sugar in #longcovid is weird. It’s either all or nothing. Usually need sugar to avoid crashes or nightly before bed to feel better in the morning. Yet, this week on #valtrex I can’t stand the site of anything sweet. This disease is so weird.

I’m anti surveillance in every single way, but as a person with #mecfs I want a million drones out surveying the city for people who light off fireworks in my neighborhood. It’s annoying as a healthy person but is catastrophic for my body as someone with #mecfs #longcovid.

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I was in research so I know the bounds of grants, pressure of publishing, etc for labs. However, I do not understand why we are not heads down on anti viral or pathogen research re: #longcovid #ms #lyme etc. The research seems so clearly pointing to persistent antigen at this point

#ChronicIllnessAwarenessMonth #DisabilityPrideMonth I am a writer and mom of four disabled by my chronic illness and I have a short book of #poetry for you! Written over a year in which I got progressively more sick and tried to wrap my head around that! (more purchase options in thread) Bookshop

I try to be grateful for my body, but I caught a glimpse of myself hunched down in my chair with my stomach rolls. My brain went immediately - Jabba the Hut. So fun going from someone who was pretty cute (mainly cause I was in shape) to a mound of play dough. #mecfs #mcas #longcovid

It can be heartbreaking to have more ambition than energy

Everyone in my family has big plans with their friends today and while I live for this and their joy (and fun pictures I get!) I would like to be out having my own girls day please and thank you.

Mamdani: "Therein lies the work of America -- a striving, a bettering, the reaching toward perfection. What a privilege each of us has to live in a nation that every one of its inhabitants can shape. What a responsibility each of us possesses to prove ourselves worthy of all those who came before."

I’m on day 8 of a 14 day holter monitor and this is the point where the thing is so dang itchy I wanna just rip it off! #mcas #longcovid #mecfs

Sunrise, Saturday, July 4, from Wainui Beach, Aotearoa / New Zealand. Happy (?) Independence Day America. Ata mārie / Good Morning ☀️

I have been on leave for two weeks now and I have seen small baseline increase. I’m still very very unwell, but small things like being able to sit up a bit longer or play a short video game every now and then is a huge QOL improvement. Don’t know if it’s pacing, powerchair or valtrex. #longcovid

I always encourage young folks to travel. Not just go someplace, but work there if you can. There’s lot of visas to aide in this. I travelled A LOT in my early twenties. The two major takeaways I got were - there are more functional systems and people in general are kind and good.

Best compounding pharmacy in CA or ships to CA?

Panem et circenses

Sunrise, FRIDAY, 3 July, from Wainui Beach, Aotearoa / New Zealand. It’s been a while since I’ve posted. Late (winter) sunrises and LOTS of cloudy mornings have contributed to that. Ata mārie / Good Morning ☀️

What in the absolute flying fu*k? Americans should be proud of the NIH (of its ingenunity, returns AND science for sciences sake). The fact that someone had the audacity to write this headline? Also, did you know a lot of “industry” is actually funded by the gov but gets none of the returns!!

Making phone calls really kicks my ass. It’s instant headache, brain fullness. It also puts me into an adrenal flare which makes me impatient, anxious and brain on fire feeling. #mecfs #longcovid #mcas

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I really have a love/hate relationship with valtrex. Makes me feel awful, but I’ll be damned if it doesn’t stop these nose cold sores in their tracks from breaking through. A miracle drug. #longcovid #mecfs

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London School of Hygiene and Tropical Medicine studied 54 young people with Long Covid and found illness made ordinary life exhausting, as fatigue and disbelief left them out of sync while others moved on. onlinelibrary.wiley.com/doi/10.1111/...

Stuff like this *feels* like it’s in the right direction with my personal experience with #MECFS. The extreme rxns where my muscles have seized up and that I experience so much cramping, tremors and twitching. Often times only way to rescue is with electrolytes.

Ya’all… The number of times I have to tell doctors #longcovid isn’t rare. I swear to god.

Also, I found out go go grand parent has an app (didnt use it today, just regular lyft). Went online and found out drivers are especially prone to cancel these. I also can’t tip in that app. This sucks bc the county subsidizes 60% of the ride through go go for disabled folks.

Rheum appt: No Raynauds. She has “no clue” why hands turn cyanotic. The appt kind of devolved into Long Covid/ME stuff bc she dug into it. Kept saying, “But you’re so young.” Hell bent on me trying HBOT/EECP. It was too long. I’m tired. I need to be stricter about lying down in the appts.

It is definitely more difficult to get lyft with a chair. First driver was great and said no problem. Ride home had 3 drivers cancel until I got matched with the same driver who took me there. This needs a feature in the app. I even say the wheelchair weighs less than most packed luggage!

Here are the top 5 dogs of June!

Can I tell you how much I don’t give a flying fart about AI protein or chemical modeling predictions until they produce a way to scale that up to real world testing. You know what that needs? Money- for science and labs. The first part is complete day dreams until this happens.

"There's nothing in my life that hasn't changed because of Long COVID." A new campaign from Public Health - King County (Washington) focuses on how Long COVID has impacted the lives of people with the disease. www.youtube.com/watch?v=GLow...

I have a doc appt today and this is my first time getting picked up with the chair. I’m worried no one will accept, bc i cannot pick up the chair and need someone to load it in the trunk. My spouse says, “If it doesn’t work, then we just reschedule to when I can take you.”

Technology Networks: 'Cellular Chain Reaction May Drive Low Energy in ME/CFS Patients' Researchers identified an immune cell defect that may drive ME/CFS symptoms. www.technologynetworks.com/tn/news/cell...

News is so grim, folks. Pick one thing you can do to relax and one good thing you can accomplish today, if you're able.

I will never, ever get over that we’re all walking around wounded by #covid and everyone’s like 🤷‍♀️

Weird pulm update. My pulmonary function test was completely normal, which is wild bc the one two years ago showed mild COPD. #longcovid #mecfs keeping me on my toes. I also guess this is a good thing maybe?!

Taking #rhapsido two days after an arterial blood draw was dumb. My arm is still in pain from the draw sites and while the swollen spots and bruising is decreasing it still hurts. It didn’t hurt at all until I took the rhapsido. I forgot it has blood thinning properties. 🤦‍♀️ #longcovid #mecfs

Valtrex makes me feel like hot garbage. It sets my #mcas off so I’m itchy and hands/feet are red and swollen. The recurrent/never end nose cold sores are an awful part of #longcovid #mecfs This one also came in like a ton of bricks bc of #rhapsido immune suppression I’m guessing.

Matt Fitzgerald was an endurance athlete and coach who ran 50 marathons. Long COVID left him unable to walk, then unable to train. Exercise did not rebuild him. It made him worse. www.nytimes.com/2026/06/30/w...

David Tuller is a fantastic advocate for #mecfs #longcovid.

Trying to work with our transporation authority to get doc appt ride credits directly applied to uber/lyft. The program currently uses go go grandparent which requires a phone call. It zapped all my energy and is way less accessible than just using an app. Frustrated. #mecfs #longcovid

#rhapsido comes with increased bleeding/bruising. Last time I took it my cycle was horrific. 🩸 This time bruising from an arterial draw was painful. I’m guessing this nose cold I woke up with is a result of its immune suppression. #neisvoid #mecfs #longcovid

WJZ reported longtime Baltimore sports anchor Stan Saunders died at 72. His family said he had long COVID that turned into sarcoidosis. A stark reminder that post-COVID illness can become deeply serious for some patients. www.the-sun.com/sport/165990...

FNIH: "Doctor Navigates New Reality as Long COVID Caregiver" fnih.org/patient-enga...

A new study links COVID-19 infection to an increased risk of Obstructive Sleep Apnea (OSA) up to 4.5 years post-infection. Those who developed long-COVID OSA also face higher risks of severe cardiovascular issues, specifically heart failure and pulmonary hypertension. Source: archive.md/4mBRw

I asked my partner if he could pumice stone my feet bc my arms are too weak. As he is dutifully learning the craft, he, the consummate east coast joker, looks up at me and says, ”I bet Quentin Tarantino would have a field day with this.” 😂 #neisvoid #mecfs #longcovid #ifyoudontlaughyoullcry

Xiangya Hospital at Central South University studied genetic data from 5,779,391 people and MRI data from 15,640. Severe COVID-19 was linked to faster brain shrinkage over time, pointing to accelerated brain aging after advanced infection. journals.lww.com/md-journal/f...

If you have #POTS and/or other types of dysautonomia and you take Corlanor aka Ivabradine, there’s a recall, check your pills: www.eatingwell.com/heart-kidney...

If you’re a millennial of a certain age and grew up loving Ludacris like I did then this one is for you: youtube.com/shorts/XM6U0...

OK then - what are folks using for symptom tracking now that can be easily exported to CSV or has good in house data vis? Guava?