@tapanuiflu
Myalgic Encephalomyelitis since 1983 Tapanui Flu epidemic | #ME | #PwME | #LongCovid ally | Covid cautious Grandmother | Ex social scientist | Mostly housebound | On welfare Website: tapanuiflu.blog Aotearoa | New Zealand
ποΈDecent article on #LongCovid in π¦πΊ
"Among the current generation of kids, many are growing up with their mother or father confined to bed or confined to bed themselves. According to a study by ANU, long COVID is hitting up to an estimated 20% of Australians"
www.crikey.com.au/2024/12/02/l...
Hi, I've also made a starter pack for anyone interested in ME CFS or Long Covid. go.bsky.app/FbLo7qc
Ah, this is great. Super-simple to use, works immediately, really clear format. Thank you βͺ@davidsainez.comβ¬ and skywriter.blue. skywriter.blue
Can any Blue Sky LC researchers help me out please? Desperately looking to source pre-pandemic covid naive biobanked blood and plasma samples from healthy children aged 8-18 (but predominantly 11-18) to act as historical control for a study? Turning out to be trickier than expected.UK based.Thx! x
INTRO POST: just got set up here although not migrating from the other place(s). Will be expanding my presence here in due course but interested in connecting with other members of the #ME or #MEcfs (sic) community.
Interests include health/science, law, journalism, tech. Blog valerieeliotsmith.com
MΕrena Aotearoa
ToitΕ« te Tiriti
ToitΕ« te Tiriti
All power, strength and love to the marchers today
Your cause is just and righteous
Many, many others who cannot be there physically are with you in their hearts, minds and guts
Ka whawhai tonu mΔtou - Ake! Ake! Ake! π€π€β₯οΈ
#kikorangi
People heroically say, βIβve never let my illness define meβ
Of course illness defines me. If I hadnβt spent 32 years in bed without effective medical attention I would be a completely different person.
Healthy people, you live in a different world, you donβt know it until you lose it.
#ME #LC
An image showing what I describe
Fun fact: If someone quotes a post of yours in a way that is unwelcome (as is commonplace on Twitter/X) there is a tool to combat the unwanted attention. Simply click the three dot menu on the quote post & click "Detach quote". This removes your post from their quote post. Useful to know, do share!
Black square with white and red writing. Text: #MEActionβs Petition to the NIH to Fund the ME/CFS Roadmap now has over 7,000 signers! Add your voice. Sign now!
β¨This petition will close TOMORROW, Nov 15!β¨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
Phew! Well, now that I've decided to move here properly from Ex, I guess I'd better introduce myself. I've been an environmental journalist since 1985, and a campaigner for most of that time. Here's some blah about my strange and not-always-happy life: www.monbiot.com/about/%F0%9F...
I feel like I am a character in a dystopian movie. We have a big chance of facing soon a pandemic with a virus that scientists know is highly neuroinvasive. H5Nx viruses like #H5N1 were already found in all the regions in the brain below. Where are the vaccines, bloody hell?!?!
More in the βthatβs not good, not good at allβ bin for today. Acute respiratory distress, despite no underlying conditions and IV antivirals.
AND they still donβt know how the poor kid was exposed. π§ͺ #episky
This abstract is too good not to share:
βIn this article, we analyzed the systematic review by Kuut et al into the efficacy of CBT for #MECFS and the eight trials in it. We found many issues with the studies in the review, but also with the review itselfβ /1
www.scibasejournals.org/neurology/10...
please consider signing
chng.it/HF2JBXQSzs
It's been a while, and in light of various recent events we do seem to be overdue for more π www.theguardian.com/world/2016/f...
Oh no, dear Brian - I am so deeply, deeply sorry for your terrible loss. There are just no words. Beth was a remarkable advocate for the worldwide ME community, her work will always be appreciated, and she will always be remembered. Sending you my heartfelt condolences at this very sad timeπ
My mum
Although less active now, for years she was very, very active eg lots of media work (over 100 radio interviews); hosted dozens of public meetings; coordinated lots of fundraising eg blue ribbon collections;lots of photocopying & stuff envelopes
Iβm v grateful
#MEcfs #CFS #PwME
Screenshot of abstract
New from Latvia:
Exploring the Joint Potential of Inflammation, Immunity, and Receptor-Based Biomarkers for Evaluating ME/CFS Progression
Only abstract currently available:
www.frontiersin.org/articles/10....
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
Workwell Foundation:
Workwell teams up with @statwearable
Our new collaboration examining whether cerebral blood flow is reduced during post-exertional malaise & if this metric helps explain the worsened orthostatic symptoms many report while in PEM/PESE
workwellfoundation.org/workwell-tea...
Dr Claire Taylor seems to have completely disappeared from X shortly after posting the above thread.
Hope she's OK.
βME/CFS patients had increased temperature in the right insula, putamen, frontal cortex, thalamus, and the cerebellum, which was not attributable to increased body temperature or differences in cerebral perfusion.βΒ
www.ncbi.nlm.nih.gov/pmc/articles...
Screenshot of abstract
New:
A scoping review ofΒ βPacingβ forΒ management ofΒ #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): lessons learned forΒ theΒ #longCOVID pandemic
Free full text:
translational-medicine.biomedcentral.com/articles/10....
#MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC
Another ME/LC researcher has joined us here β yay! bsky.app/profile/dran...
Yes! Please do send this form along to anyone in the disability and chronic illness communities who might be interested in trying out Blue Sky.
π©βπ»New Research in!
Looks very interesting
"Beautiful work," states David Putrino
www.statnews.com/2023/10/16/l...
Please sign and share this petition to help Karen a severe ME patient who is not getting the help she so desperately needs from the hospital! It is so close to the 10,000 signatures!
www.change.org/p/save-karen...
Graphic saying Long Covid, Lives Ruined, We need answers.
We've arrived on Bluesky! Please bear with us while we get up and running on here.
If you have suggestions on who to follow on here from the Long Covid and wider chronic illness communities please let us know!