tamsin yeld into the void

wrote that 5 years ago, 3 years after getting sick. still holds.

... my life plays out
in torturous slippery snapshots,
catching at my limbs,
as they flail around,
attempting to cling on
to what is solid,
the me before,
the me i cant forget.

#MECFS

here i am.
here is my shell.
my spirit comes in waves.
today i am drowning,
high tide,
ripped along the undertow,
abraded by shingle,
tossed every which way,
i know not which is up,
down nor ahead.....

unbelievable. @bsky.app - is there a way of getting these bots off the platform?

I love the sound of this! where can I watch it?

Great study. Confirms my choice to get on oestrogen, instead of just progesterone. Also 5HTP has been a winner for me in terms of 💤. Now just to get in a bit of inulin and F. prausnitzii for my poor ole guts. #MECFS #pwme #MHT

Hi! 👋🏽 I'm here, just sporadically 🐢

of course, thanks! really appreciate your input!

Thanks for yr reply! I don't have benadryl, but I cd try famotidine? I'm thinking it may be a BP thing, as I take l-theanine, taurine, ashwagandha & garlic atm.. my blood pressure is prob in the minus figures ... I realise now! lol

@rahaeli.bsky.social - you got any ideas on why the extended hot flush? is it a mast cell thing, or just menopause going haywire?

so this clonidine thing is not really working for me. 1st few weeks 👍🏼 Garmin body battery showed daytime recharge (usu. unheard of), hot flushes less frequent, lasting far less, HR down. But now, sleepless nights with nightmares and a hot flush that lasts all fucking night long. #MCAS #MECFS

yay! good luck at the clinic- hope you can remain stable enough to go!

so glad that it's been so beneficial for you. I've had mecfs for coming up 8 yrs now, so I've pretty much learnt how to pace - the body battery feature has been invaluable in that learning. HR is now controlled by clonidine!

Hey, have you come across clonidine? It's a new one for me, but works really well alongside ketotifen - both great for MCAS (if you weren't aware)

ah, last time I checked, the armband wasn't available over here, down under. I think I'll just stick with my Garmin! I gave up recording symptoms, because... WAY too stressy and too much work. How's the armband working for you? Do you have anything to compare it with?

I don't know if anyone with #MECFS has experienced this, using the #Visible app, but this morning my finger (on the torch) was about to explode with the amount of needle sensations I was feeling. I've already alternated fingers due to the tingling I get from it, but this was insane.

I relate.
#MECFS
#DogDays

Patient-reported treatment outcomes in ME/CFS and long COVID | PNAS Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are persistent multisystem illnesses affecting many patients. With no kn...

seeing my fab doc again today. do I have enough time to go thru this list of tx? haha www.pnas.org/doi/10.1073/... Great study by Martha Eckey (Long Covid Pharmd on Substack) 🙏
#MECFS #LongCovid

when I first got sick (nearly 8 incredibly long years ago) my MMP9 readings were off the chart. Sadly, no GP really understands what they do and how to bring the reading down. Hopefully this will enlighten us all. #MECFS

My barbershop wheelie stool is one of my greatest assets whilst in the throes of #MECFS. When you account for the fact that a pair of legs weighs a whopping 1/3 of your total body weight, it makes sense to stop hauling them around, and sit your arse down as much, and as often, as you can.

We can stop AUKUS! getup.to/4XjQ7tyC1B4uE
$368B! that's a lot of research into #MECFS, investment in public housing, disability services etc. Plus, who the hell in their right mind would get into bed with the US right now?

Been thinking about peptides for my worsening gut issues, had heard of BPC-157 and came across this. Seems like it helps SO much more than gut issues. Anyone with #MECFS or #LeakyGut can corroborate?

TREATME: the Open Medicine Foundation's Mammoth ME/CFS and Long COVID Treatment Survey Results - Health Rising The massive TreatME survey assessed the effectiveness of 150 treatments in ME/CFS and long COVID.

TREATME: the Open Medicine Foundation’s Mammoth ME/CFS and Long COVID Treatment Survey Results #MECFS #longCOVID

www.healthrising.org/blog/2025/07...

🪷

6. Don’t ignore that pets can carry ticks, too.
5. Don’t skip tick checks. 4. Don’t leave outdoor clothes on after coming inside. 3. Don’t wander through tall grass. 2. Don’t skip insect repellent. 1 Don’t wear dark clothes.
you're welcome.

plus, it's a buzz feed article. not apple.

I'm not sure why, my phone works, and i don't support Apple. did u try clicking the link?

A photo shows three scientists in lab coats, gloves, and protective eyewear gathered around a lab bench with test tubes and a microscope. At the top is the StudyME logo. The website URL, www.omf.ngo/studyme, appears at the bottom of the image.

OMF StudyME is a free global recruitment tool that connects individuals interested in participating in research studies with the researchers conducting them.

Sign up to help accelerate research into #MECFS and #LongCOVID 👉 www.omf.ngo/studyme.

it's free to view. no a/c needed

read the article!