My father, who is a composer, when I asked him to try and get his chichi town to recognize Long Covid Awareness Day and instead composed a lacrimosa for those lost to covid and #longcovid and now some fancy orchestras/choirs are performing it.
Not exactly why I had in mind, but I guess it works. 🤷♀️
It’s been 5 yrs today since Rivka Solomon was featured on PBS NewsHour, raising awareness about ME/CFS & Long COVID. Advocates like Rivka have worked tirelessly to bring awareness to people newly diagnosed w/ Long COVID, & related diseases. We are #StillSickStillFighting
www.pbs.org/newshour/bri...
Got IV saline + vitamin C.
We’ll see if it does anything for legs.
Interestingly she told me she’s seeing more folks with POTS recently.
. @davetuller1.bsky.social & I amongst others were interviewed for this.
#MEcfs #LongCovid #PwME
Another sleepless night.
More awful restless leg and leg pain.
My soul is weary and tired.
Ooo I think I saw them when I first got sick and they were just getting their practice going supporting Long Covid folks. Interesting to know they specialize in this now!
Does anyone in the Bay Area have a doctor who is familiar with hEDS?
At my first appt at the Stanford #mecfs #longcovid clinic he did a quick exam and said I most likely had it, but never had a formal diagnosis.
I’m also 99% certain I have #CCI which would align with this.
Does anyone else’s #mcas make their head/hair itch?
When I’m flaring all I want to do is shave my head.
This wonderful hell of my restless legs get worse the more consecutive days of cetirizine I take, but I’ve had bad rxns to loratadine and fexofenodrine so I just get to live in flushing, swollen, hivey, allergy hell for two days.
Tried famotidine bc something is better than nothing.
I hate #mcas
Bipap two min trial today:
Felt OK - ish. Still have ears ringing like crazy. Lungs a bit achey. 🫁
We’ll see if there’s a latent MCAS attack, but fingers crossed.🤞
These should be cheap and readily available everywhere.
Any reccos both good and bad would be awesome!
New York University Abu Dhabi researchers found coronaviruses rewire cell metabolism in similar ways, exposing shared weak points like mitochondrial transport that could be targeted to slow viral growth.
www.biorxiv.org/content/10.6...
Bad leg pain last night and still going strong. So I’m team #nosleep
Everytime I feel “better” it is bc of an adrenal flare or fake energy from a medication suppressing a symptom.
Everytime it ends badly.
I just need to put up a sign that says, “You’re not well. Don’t get upright.”
A new visual from wecrunchme showing how #ME/CFS creates extreme physical limitations - worse than those typically seen in patients with cancer, heart disease, or other common chronic conditions.
This uses the SF-36 measure, with results from Nacul et al. (2011) paper.
@rorpreston.bsky.social
Sunrise, Tuesday, 21 April from Wainui Beach, Aotearoa / New Zealand.
The sun has not quite cleared the low clouds on the horizon, but I had to get to work.
Ata mārie / Good Morning ☀️
I’ve had the Rhapsido just sitting there for weeks bc I’m not looking forward to trying a new med.
Think I’ll wait until the whole Bipap trial is over before introducing anything new.
Does anyone have recommendations for power chairs?
Has anyone found having oxygen on hand for crashes/PEM helps?
I’ve been using cannisters and they do help, but they go quickly.
I’m wondering if extended 02 (say like 30 min) works better as a rescue soln rather than a couple puffs of cannister?
#MCAS folks—
The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers.
Please take it, please share it!
Survey: forms.office.com/e/N4RDJYVep0
Org: ismcas.org
Qs: advocacy@ismcas.org
New transcription signals in SARS-CoV-2 reshape virus–host interactions
journals.plos.org/plosbiology/...
Sun Post (Twin Cities, MN): 'Have you heard of myalgic encephalomyelitis?'
"Imagine the worst flu you've ever had and it never goes away,"said Linda Tannenbaum of the Open Medicine Foundation
"We really are pushing ahead right now," Tannenbaum said
www.hometownsource.com/sun_post/com...
My spouse has lived most of his adult life in the #bayarea so when I told him the half pill of antihistamine I took wasn’t enough he replied:
“I don’t bust em in half it leave a nasty taste, I swallow em hole and get the… thizz face.”
I needed the levity. 😂
#macdre
Musicals are so much fun!
Ay yi yi.
The first biochem research lab I worked in focused on microtubule function so hearing this makes me shudder.
I don’t have spoons to read anymore, but I still plan on putting in a purchase request for this book at my local library when it comes out.
Dude, same.
And now that it’s the afternoon and the morning activities and post food effects have set in and I feel like crap this immediately goes away 😝
It also tells me I was in an adrenal flare. You think I would have learned by now. 🙃
