Tapanui 'Flu
@tapanuiflu.bsky.social
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
Grandmother | Ex social scientist | Mostly housebound | On welfare
Website: tapanuiflu.blog
Aotearoa | New Zealand
Reposted by Tapanui 'Flu
🗞️Decent article on #LongCovid in 🇦🇺
"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...
"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...
Long COVID is becoming a serious social and economic issue for Australia
Addressing this health challenge is vital to getting many people back participating fully in their lives.
www.crikey.com.au
December 2, 2024 at 12:35 PM
🗞️Decent article on #LongCovid in 🇦🇺
"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...
"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...
Reposted by Tapanui 'Flu
Hi, I've also made a starter pack for anyone interested in ME CFS or Long Covid. go.bsky.app/FbLo7qc
November 14, 2024 at 5:27 AM
Hi, I've also made a starter pack for anyone interested in ME CFS or Long Covid. go.bsky.app/FbLo7qc
Reposted by Tapanui 'Flu
Ah, this is great. Super-simple to use, works immediately, really clear format. Thank you @davidsainez.com and skywriter.blue. skywriter.blue
skywriter.blue
Convert Bluesky threads into shareable web pages.
skywriter.blue
November 25, 2024 at 9:17 AM
Ah, this is great. Super-simple to use, works immediately, really clear format. Thank you @davidsainez.com and skywriter.blue. skywriter.blue
Reposted by Tapanui 'Flu
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
November 20, 2024 at 9:23 PM
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
Reposted by Tapanui 'Flu
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
Interests include health/science, law, journalism, tech. Blog valerieeliotsmith.com
November 17, 2024 at 5:58 PM
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
Interests include health/science, law, journalism, tech. Blog valerieeliotsmith.com
Reposted by Tapanui 'Flu
Mōrena Aotearoa
Toitū te Tiriti
Toitū 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 mātou - Ake! Ake! Ake! 🖤🤍♥️
#kikorangi
Toitū te Tiriti
Toitū 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 mātou - Ake! Ake! Ake! 🖤🤍♥️
#kikorangi
November 18, 2024 at 5:17 PM
Mōrena Aotearoa
Toitū te Tiriti
Toitū 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 mātou - Ake! Ake! Ake! 🖤🤍♥️
#kikorangi
Toitū te Tiriti
Toitū 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 mātou - Ake! Ake! Ake! 🖤🤍♥️
#kikorangi
Reposted by Tapanui 'Flu
People heroically say, “I’ve never let my illness define me”
Of course illness defines me. If I hadn’t 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 don’t know it until you lose it.
#ME #LC
Of course illness defines me. If I hadn’t 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 don’t know it until you lose it.
#ME #LC
November 17, 2024 at 9:10 AM
Reposted by Tapanui 'Flu
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!
November 12, 2024 at 2:19 PM
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!
Reposted by Tapanui 'Flu
✨This petition will close TOMORROW, Nov 15!✨ 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
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
November 14, 2024 at 2:54 PM
✨This petition will close TOMORROW, Nov 15!✨ 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
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
Reposted by Tapanui 'Flu
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...
https://www.monbiot.com/about/🧵
November 13, 2024 at 3:02 PM
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...
Reposted by Tapanui 'Flu
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?!?!
November 13, 2024 at 4:00 AM
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?!?!
Reposted by Tapanui 'Flu
More in the “that’s not good, not good at all” bin for today. Acute respiratory distress, despite no underlying conditions and IV antivirals.
AND they still don’t know how the poor kid was exposed. 🧪 #episky
AND they still don’t know how the poor kid was exposed. 🧪 #episky
Canadian teen with suspected avian flu in critical condition
www.cidrap.umn.edu
November 12, 2024 at 10:38 PM
More in the “that’s not good, not good at all” bin for today. Acute respiratory distress, despite no underlying conditions and IV antivirals.
AND they still don’t know how the poor kid was exposed. 🧪 #episky
AND they still don’t know how the poor kid was exposed. 🧪 #episky
Reposted by Tapanui 'Flu
This abstract is too good not to share:
“In 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 itself” /1
www.scibasejournals.org/neurology/10...
“In 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 itself” /1
www.scibasejournals.org/neurology/10...
November 12, 2024 at 10:03 PM
This abstract is too good not to share:
“In 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 itself” /1
www.scibasejournals.org/neurology/10...
“In 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 itself” /1
www.scibasejournals.org/neurology/10...
Reposted by Tapanui 'Flu
March 18, 2024 at 5:35 AM
Reposted by Tapanui 'Flu
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
I’m v grateful
#MEcfs #CFS #PwME
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
I’m v grateful
#MEcfs #CFS #PwME
(Ireland)
Vera Kindlon (our chairperson) with some of the 14 packs of #ChristmasCards she's selling for the 27th (?) year.
Packs available with verses in English or English & Irish.
irishmecfs.org/christmas_ca...
No one gets a commission
#MEcfs #CFS #MyalgicEncephalomyelitis #PwME
Vera Kindlon (our chairperson) with some of the 14 packs of #ChristmasCards she's selling for the 27th (?) year.
Packs available with verses in English or English & Irish.
irishmecfs.org/christmas_ca...
No one gets a commission
#MEcfs #CFS #MyalgicEncephalomyelitis #PwME
November 30, 2023 at 5:58 PM
Reposted by Tapanui 'Flu
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
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
November 28, 2023 at 4:33 PM
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
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
Reposted by Tapanui 'Flu
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...
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...
Workwell Teams up with STAT Health | Workwell Foundation
Workwell Foundation recently teamed up with Daniel Lee, the co-founder and CEO of STAT Health, to test an exciting new in-ear wearable device that measures blood flow to the head.
workwellfoundation.org
November 16, 2023 at 4:11 PM
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...
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...
Reposted by Tapanui 'Flu
Dr Claire Taylor seems to have completely disappeared from X shortly after posting the above thread.
Hope she's OK.
Hope she's OK.
October 22, 2023 at 10:43 PM
Dr Claire Taylor seems to have completely disappeared from X shortly after posting the above thread.
Hope she's OK.
Hope she's OK.
Reposted by Tapanui 'Flu
“ME/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.”
www.ncbi.nlm.nih.gov/pmc/articles...
www.ncbi.nlm.nih.gov/pmc/articles...
Evidence of widespread metabolite abnormalities in Myalgic Encephalomyelitis/Chronic Fatigue Syndrom...
Previous neuroimaging studies have detected markers of neuroinflammation in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Magnetic Resonance Spectroscopy (MRS) is suitable...
www.ncbi.nlm.nih.gov
October 17, 2023 at 4:34 AM
“ME/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.”
www.ncbi.nlm.nih.gov/pmc/articles...
www.ncbi.nlm.nih.gov/pmc/articles...
Reposted by Tapanui 'Flu
New:
A scoping review of ‘Pacing’ for management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): lessons learned for the #longCOVID pandemic
Free full text:
translational-medicine.biomedcentral.com/articles/10....
#MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC
A scoping review of ‘Pacing’ for management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): lessons learned for the #longCOVID pandemic
Free full text:
translational-medicine.biomedcentral.com/articles/10....
#MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC
October 15, 2023 at 1:14 PM
New:
A scoping review of ‘Pacing’ for management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): lessons learned for the #longCOVID pandemic
Free full text:
translational-medicine.biomedcentral.com/articles/10....
#MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC
A scoping review of ‘Pacing’ for management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): lessons learned for the #longCOVID pandemic
Free full text:
translational-medicine.biomedcentral.com/articles/10....
#MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC
Reposted by Tapanui 'Flu
Another ME/LC researcher has joined us here — yay! bsky.app/profile/dran...
October 16, 2023 at 1:53 PM
Another ME/LC researcher has joined us here — yay! bsky.app/profile/dran...
Reposted by Tapanui 'Flu
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.
I'm here thanks to @julierehmeyer.bsky.social ,do you know other #MillionsMissing with #mecfs #LongCovid #PostCovid #lyme #qvs who need an invite? Send them Julie's Google form 😁
Julie very patiently kept sending invites and with the 3rd code I was in!
Ps not sure if hashtags are a thing here🙈
Julie very patiently kept sending invites and with the 3rd code I was in!
Ps not sure if hashtags are a thing here🙈
Woohoo! We've distributed 3000 BlueSky codes to the chronic illness/disability community! Right now, I'm not accepting donations because our supply is plentiful, but I expect to reopen in a few days. Please spread the word to friends in this community who'd like to join us. forms.gle/newm1kPSWbb3...
October 16, 2023 at 3:50 PM
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.