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Tapanui 'Flu

@tapanuiflu.bsky.social
1.3K followers 1.5K following 3 posts

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

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Reposted by Tapanui 'Flu
Long Covid Advocacy @longcovidadvoc.com · 02/12/2024
🗞️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...
crikey.com.au
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.
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Linda @lindaoh.bsky.social · 14/11/2024
Hi, I've also made a starter pack for anyone interested in ME CFS or Long Covid. go.bsky.app/FbLo7qc
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George Monbiot @georgemonbiot.bsky.social · 25/11/2024
Ah, this is great. Super-simple to use, works immediately, really clear format. Thank you ‪@davidsainez.com‬ and skywriter.blue. skywriter.blue
skywriter.blue
skywriter.blue
Convert Bluesky threads into shareable web pages.
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Dr Rae Duncan @sunny-rae1.bsky.social · 20/11/2024
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
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Valerie Eliot Smith @valerieeliotsmith.bsky.social · 17/11/2024
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
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Mrs Chippy🏳️‍🌈🏳️‍⚧️ @mrschippy.bsky.social · 18/11/2024
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
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Carole Bruce @cabruce.bsky.social · 17/11/2024
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
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Tom Ashbyトム アシュビー @tomaashby.bsky.social · 12/11/2024
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!
An image showing what I describe
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/11/2024
✨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
Black square with white and red writing. Text: #MEAction’s Petition to the NIH to Fund the ME/CFS Roadmap now has over 7,000 signers! Add your voice. Sign now!
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George Monbiot @georgemonbiot.bsky.social · 13/11/2024
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...
monbiot.com
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Danielle Beckman @daniellebeckman.bsky.social · 13/11/2024
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?!?!
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Dr. Stephanie @punkrockscience.bsky.social · 12/11/2024
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
cidrap.umn.edu
Canadian teen with suspected avian flu in critical condition
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Patients with Power @ptswithpower.com · 12/11/2024
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...
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Dr Hu @huhana.bsky.social · 18/03/2024
please consider signing chng.it/HF2JBXQSzs
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ME Foggy Dog @mefoggydog.bsky.social · 23/12/2023
Devastating loss of a magnificent woman and advocate 💔 Beth and Foggy had adventures in Hawaii in 2015 and will be very sadly missed by Team Foggy. Rest in peace Beth 💙 See ME action statement- www.meaction.net/2023/12/22/s... #PwME #MEcfs
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Tom Kindlon @tomkindlon.bsky.social · 30/11/2023
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
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Tom Kindlon @tomkindlon.bsky.social · 28/11/2023
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
Screenshot of abstract
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Tom Kindlon @tomkindlon.bsky.social · 16/11/2023
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...
workwellfoundation.org
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.
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Lucibee @lucibee.bsky.social · 22/10/2023
Dr Claire Taylor seems to have completely disappeared from X shortly after posting the above thread. Hope she's OK.
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Illustrator Interrupted @franceyme.bsky.social · 17/10/2023
“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...
ncbi.nlm.nih.gov
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...
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Tom Kindlon @tomkindlon.bsky.social · 15/10/2023
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
Screenshot of abstract
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Julie Rehmeyer @julierehmeyer.bsky.social · 16/10/2023
Another ME/LC researcher has joined us here — yay! bsky.app/profile/dran...
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Julie Rehmeyer @julierehmeyer.bsky.social · 16/10/2023
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.
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Long Covid Advocacy @longcovidadvoc.com · 16/10/2023
👩‍💻New Research in! Looks very interesting "Beautiful work," states David Putrino www.statnews.com/2023/10/16/l...
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flowermad @flowermad.bsky.social · 16/10/2023
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...
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Long Covid UK @longcoviduk.bsky.social · 16/10/2023
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!
Graphic saying Long Covid, Lives Ruined, We need answers.
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Brian Hughes @bmhughes.bsky.social · 16/10/2023
Interesting report on Charité Fatigue Center's 2nd International Meeting on ME/CFS & implications of #LongCovid for diagnosis & treatment. Of particular interest: focus on (a) biological underpinnings, including endothelial & immune dysfunction, (b) modern treatments & (c) clinical trials #MECFS
sciencedirect.com
Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome – State...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating disease affecting millions of people worldwide. Due to the 2019 pandemic …
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Lucibee @lucibee.bsky.social · 16/10/2023
Potentially important #LongCovid study in Cell. 🦠 Serotonin reduction seems to be driven by viral RNA-induced type I IFNs. 🎯 Affects tryptophan uptake and hypercoagulability. 🧠 Peripheral serotonin deficiency impairs cognition via reduced vagal signaling. www.cell.com/cell/fulltex...
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Rori! @roricomics.bsky.social · 21/08/2023
Hey I made a quick welcome guide to BlueSky :) There's tons more, but I think these few steps will get you up and enjoying it quickly.
So you decided to join BLUE SKY
[it's not twitter]
#1 upload an avatar
#2 set Moderation Settings

(box showing moderation hand symbol) Moderation (arrow pointing to) Content Filtering(arrow pointing to drawing of toggle) Toggle to enable Adult Content
THEN choose Hide, Warn, or SHOW
(star) tip: images are AI moderated so some slip thru & some G-rated images get tagged as "explicit", so "Warn" may be the bet choice atm
#3 Go to SETTINGS
(box with drawing of toggle) toggle require alt text on images (please ♥)
(arrow points to) Home Feed Prefs
(star) Use these settings to control seeing reposts & replies on your TL#4 Go to My Feeds
Go to "Discover New Feeds" to search for interesting feeds like "Only Posts"
Click the "+" to add the feed
(box) Go to the (gear icon) [edit my feeds] here you can pin and unpin feeds
(side note) pinned feed will appear at the top of your TL
Don't forget to "♥" the feed when you click on it to preview, this helps others find it!
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David Davies-Payne @d2p.bsky.social · 16/10/2023
Welcome @drannanz.bsky.social.
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Julie Rehmeyer @julierehmeyer.bsky.social · 13/10/2023
Yay! Brian Hughes is here! @bmhughes.bsky.social
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Tom Kindlon @tomkindlon.bsky.social · 12/10/2023
Update from today’s webinar: over 20,500 kits requested (not all circulated yet). Over 15,500 returned. They have funding for analysis of 25,000 (including 5000 #PostCovid #Mecfs). So please keep highlighting recruitment & also the need to return kits #PwME #CFS #LongCovid #LC #DecodeME
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ez @elinz.bsky.social · 11/10/2023
@abrokenbattery.bsky.social Happy to see you here! Welcome 😊
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Julie Houston @julesahouston.bsky.social · 10/10/2023
Sadly there's been no response from the CEO of the NHS Trust. "Karen is continuing to struggle and is still getting thinner and thinner." Her family ask the community to continue signing & sharing the petition. Update 👇. #VerySevereME #EndMalnutritioninME #MECFS www.change.org/p/save-karen...
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Trish Davis @ozfish.bsky.social · 08/10/2023
There is a new update on this petition. Over 40 organisations have signed in suport. Please keep signing and sharing. The petition remains open until Cochrane no longer hosts a review supporting exercise for ME/CFS. #pwme, #ME/CFS, #Long Covid www.change.org/p/cochrane-w...
change.org
8 October - Global solidarity
Last week we passed the 4th anniversary of the publication of the flawed 2019 version of the Cochrane review 'Exercise Therapy for CFS' by Larun, Brurberg, Odgaard-Jensen and Price. It is also the 4th...
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