Pinned Tweet
Today is my 6 year Covid anniversary. The person I was in 2019 no longer exists. Despite all of this I am grateful for the wonderful people I have met with mecfs and long covid. I am also grateful to have been given the opportunity to participate in trials like Ampligen, CovidUpp and Sipavibart.
Pictures:
Left to right:
2019 me, me during the 2023 Ampligen trial, me during the current Sipavibart trial, Nancy Klimas (a person I got the honor to meet)
Ramy2.0 retweeted
I have 2.5 months until my next major neurosurgery, please RT and QT and reply to this ⬇️ fundraising post ⬇️ even if you can’t donate, everything helps! Thank you ❤️🩹
In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural
Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection
This procedure will be out-of-state, costly and have a long recovery
Please donate and boost! Ty
gofundme.com/f/help-emily-ge…
I do have an idea. Well this is not my idea. This has already been done, so not my idea but. I want to use stickers, buy them from someone I guess and place them in public spaces where the law allows it. I will try to do that in my walks. #TreatMECFS
How is it that the person who wrote 5 poems in a row the other day has absolutely and I mean it, no idea of what to write today...
2
4
189
Meditation has become easier and easier. Now in week 10, sometimes I say to myself...let's just meditate and while meditating instead of saying I want to end this, sometimes I say, keep going! Don't go back to the real world. Lol
1
6
233
Oh no! Someone is sitting near the meditation tree. Gosh...ok another place, oh this tree here looks ok
147
Ramy2.0 retweeted
Image is a Substack headline, "Autoinflammatory Diseases, ME/CFS and Long COVID: What they teach us about immune activation, disease flares and persistent symptoms"
There’s something that has always struck me about ME/CFS and Long COVID.
Many patients experience a worsening of their symptoms after physical exertion, an infection, a poor night’s sleep, or a stressful situation. And for years, this worsening has sometimes been used to suggest that the illness has a psychological origin.
But did you know that some of these very same factors can also trigger flares in inflammatory diseases whose biological mechanisms we understand quite well?
I want to share a study that I find particularly interesting, because I think it challenges the way we interpret symptom flares in ME/CFS and Long COVID.
What if we’ve spent years confusing what triggers a flare with what actually causes the disease?
1/
What are some of the devices you use to track oxygen levels and HRV? I use Garmin Smartvivo 5 and you?
109
Ramy2.0 retweeted
Clouds pressed on sky,
inked bruises fade
as soft colour
blooms slowly
and the sun’s strokes
become more demanding,
spanning the horizon.
There is something
hushed about
an unhurried weekend morning;
let’s take our time
to revel in the view
rising before our eyes.
Give this guy some love...hint...chapter one with the celestials and infernals is...next level stuff. If you are into Zelda stuff, this is your guy
Do you want to see more of my art? 👀 teapawt.net/AuthorGFAllen/creator-…
1
104
#Poetry
Daffodils in the kitchen,
Yolk eyes against a sea
Of white ceramic, a pan to boil us
Both, my plasma too,
I like my meals full of dawn,
Pinching my veins because
Crimson always dies in a tint of yellow,
And a daffodil eye to give me
Twin suns, I was born binary,
And now I see some Irish bells,
Lime like a cheek gone by,
Sir why are you so green,
I come back home from the
Hospital, I dont know why
When you live full of limes
All you want is yellow
3
139
#Poetry
I saw the corners of the world
In that palm and then
Saw how terrifying it is for
A world to grow five wings
And stretch the continents
Into four parts,
And saw how the world was never
Round it was just rooted
To your nails and the cliff
Ended in nail polish,
The last dawn over ridged
Mountains, crimson
And alive, velvet
Over a lunula womb