@BendyHEDS&Co
@bendyhedsandco.bsky.social
For Awareness & Support of
#Hypermobility #hEDS/HSD #POTS #ME/CFS #MESpine #Stenosis #MCAS & co.
#PANS/PANDAS & #LongCovid ally
#NEISVoid
#MedEd for EDS/HSD & co 🔗 conditions go to:
👉 https://gptoolkit.ehlers-danlos.org/ 👈
#Hypermobility #hEDS/HSD #POTS #ME/CFS #MESpine #Stenosis #MCAS & co.
#PANS/PANDAS & #LongCovid ally
#NEISVoid
#MedEd for EDS/HSD & co 🔗 conditions go to:
👉 https://gptoolkit.ehlers-danlos.org/ 👈
Reposted by @BendyHEDS&Co
www.youtube.com/live/5BP5Fi9...
1st Day of the 2 is live now & you can rewind it. Unsure if the live is available to all while live, I preregistered.
1st Day of the 2 is live now & you can rewind it. Unsure if the live is available to all while live, I preregistered.
November 12, 2025 at 4:41 PM
www.youtube.com/live/5BP5Fi9...
1st Day of the 2 is live now & you can rewind it. Unsure if the live is available to all while live, I preregistered.
1st Day of the 2 is live now & you can rewind it. Unsure if the live is available to all while live, I preregistered.
Reposted by @BendyHEDS&Co
The conference aims to raise awareness and understanding among healthcare professionals, researchers, policy makers, patients and advocates about ME/CFS, long Covid and other post-viral illnesses.
📆 When? 12-13 November 2025
📍 Where? Online
📆 When? 12-13 November 2025
📍 Where? Online
November 10, 2025 at 11:10 AM
The conference aims to raise awareness and understanding among healthcare professionals, researchers, policy makers, patients and advocates about ME/CFS, long Covid and other post-viral illnesses.
📆 When? 12-13 November 2025
📍 Where? Online
📆 When? 12-13 November 2025
📍 Where? Online
Reposted by @BendyHEDS&Co
📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!
November 10, 2025 at 11:10 AM
📢 The International Conference on Clinical and Scientific Advances on ME and Long Covid is taking place in Porto, Portugal next week and you can register to attend online for free!
Reposted by @BendyHEDS&Co
Would you like to send or receive a card from another person with ME this Christmas? 🎄
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
November 10, 2025 at 2:05 PM
Would you like to send or receive a card from another person with ME this Christmas? 🎄
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
Or do you know someone severely affected by ME who would appreciate a card?
Join our Christmas Angels project! 😇
Reposted by @BendyHEDS&Co
Momentum is growing for our Making the invisible visible campaign on 8th November 2025, to mark World Ventil8 Day - why not join us?
Visit the campaign website to learn more and register 👉 bit.ly/mtiv25
#MTIV25 #MTIV #SaferAirProject #IndoorAirQuality #MTIVNews
Visit the campaign website to learn more and register 👉 bit.ly/mtiv25
#MTIV25 #MTIV #SaferAirProject #IndoorAirQuality #MTIVNews
Making the invisible visible 2025 — The Safer Air Project
bit.ly
October 27, 2025 at 1:35 AM
Momentum is growing for our Making the invisible visible campaign on 8th November 2025, to mark World Ventil8 Day - why not join us?
Visit the campaign website to learn more and register 👉 bit.ly/mtiv25
#MTIV25 #MTIV #SaferAirProject #IndoorAirQuality #MTIVNews
Visit the campaign website to learn more and register 👉 bit.ly/mtiv25
#MTIV25 #MTIV #SaferAirProject #IndoorAirQuality #MTIVNews
Reposted by @BendyHEDS&Co
Tag your friends to help get the message out! @greensagainstcovid.bsky.social 💚
✅ We demand #CleanAir to stop the spread of airborne infectious diseases & protect schoolkids, workers & vulnerable friends & family from #Covid & #LongCovid
✅ We demand #CleanAir to stop the spread of airborne infectious diseases & protect schoolkids, workers & vulnerable friends & family from #Covid & #LongCovid
November 8, 2025 at 3:09 PM
Tag your friends to help get the message out! @greensagainstcovid.bsky.social 💚
✅ We demand #CleanAir to stop the spread of airborne infectious diseases & protect schoolkids, workers & vulnerable friends & family from #Covid & #LongCovid
✅ We demand #CleanAir to stop the spread of airborne infectious diseases & protect schoolkids, workers & vulnerable friends & family from #Covid & #LongCovid
Reposted by @BendyHEDS&Co
We are delighted to welcome @catsmithmp.bsky.social as our newest Parliamentary Champion!
We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...
We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...
October 7, 2025 at 2:31 PM
We are delighted to welcome @catsmithmp.bsky.social as our newest Parliamentary Champion!
We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...
We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...
Reposted by @BendyHEDS&Co
2/2
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
An update from the APPG's Chair, @joplatt.bsky.social MP, is attached.
#MyalgicE #MyalgicEncephalomyelitis
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
An update from the APPG's Chair, @joplatt.bsky.social MP, is attached.
#MyalgicE #MyalgicEncephalomyelitis
October 29, 2025 at 9:31 AM
2/2
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
An update from the APPG's Chair, @joplatt.bsky.social MP, is attached.
#MyalgicE #MyalgicEncephalomyelitis
We are currently working to rearrange the session to ensure that the evidence session still goes ahead and will share further news on this once a new date has been secured.
An update from the APPG's Chair, @joplatt.bsky.social MP, is attached.
#MyalgicE #MyalgicEncephalomyelitis
Reposted by @BendyHEDS&Co
More on DecodeME and our partnership with the University of Edinburgh 👇
www.actionforme.org.uk/research-cam...
#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
www.actionforme.org.uk/research-cam...
#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
October 30, 2025 at 3:35 PM
More on DecodeME and our partnership with the University of Edinburgh 👇
www.actionforme.org.uk/research-cam...
#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
www.actionforme.org.uk/research-cam...
#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
Reposted by @BendyHEDS&Co
People with disabilities have been victimised by successive governments for a long time. Reform has threatened more cuts for this. How do you propose to support people with disabilities?What can you say to encourage them to support the Green Party?
November 6, 2025 at 3:19 PM
People with disabilities have been victimised by successive governments for a long time. Reform has threatened more cuts for this. How do you propose to support people with disabilities?What can you say to encourage them to support the Green Party?
Reposted by @BendyHEDS&Co
Labour cancelled 13 million covid vaccines to clinically vulnerable. This week 188 people have died from COVID. I feel nothing has been learnt. It’s made a mockery out of the COVID inquiry. We now need another inquiry to investigate this governments mishandling.
November 6, 2025 at 2:23 AM
Labour cancelled 13 million covid vaccines to clinically vulnerable. This week 188 people have died from COVID. I feel nothing has been learnt. It’s made a mockery out of the COVID inquiry. We now need another inquiry to investigate this governments mishandling.
Reposted by @BendyHEDS&Co
🎉 I’ll be appearing live on #TheLastLeg tomorrow night. 10pm on Channel 4.
🎤 Reply below or text The Last Leg on 07956 175 908 with any questions you’d like me to answer on the show!
🎤 Reply below or text The Last Leg on 07956 175 908 with any questions you’d like me to answer on the show!
November 6, 2025 at 1:14 PM
🎉 I’ll be appearing live on #TheLastLeg tomorrow night. 10pm on Channel 4.
🎤 Reply below or text The Last Leg on 07956 175 908 with any questions you’d like me to answer on the show!
🎤 Reply below or text The Last Leg on 07956 175 908 with any questions you’d like me to answer on the show!
Reposted by @BendyHEDS&Co
The internet cut out ending the Space early — new Space link is here!
Ella Eastin and Isabel Burnett are sharing their stories as dysautonomia patients and how that spurred their professional medical paths x.com/renegaderes/...
Ella Eastin and Isabel Burnett are sharing their stories as dysautonomia patients and how that spurred their professional medical paths x.com/renegaderes/...
Renegade Research on X: "https://t.co/fig4J4O6On" / X
https://t.co/fig4J4O6On
x.com
October 25, 2025 at 6:17 PM
The internet cut out ending the Space early — new Space link is here!
Ella Eastin and Isabel Burnett are sharing their stories as dysautonomia patients and how that spurred their professional medical paths x.com/renegaderes/...
Ella Eastin and Isabel Burnett are sharing their stories as dysautonomia patients and how that spurred their professional medical paths x.com/renegaderes/...
Reposted by @BendyHEDS&Co
💜 It’s #PoTSAwarenessDay 2025
#Covid uncovered what many already knew — #PoTS changes everything.
Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more.
💬 Have you been diagnosed after Long Covid?
#Covid uncovered what many already knew — #PoTS changes everything.
Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more.
💬 Have you been diagnosed after Long Covid?
October 25, 2025 at 8:50 AM
💜 It’s #PoTSAwarenessDay 2025
#Covid uncovered what many already knew — #PoTS changes everything.
Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more.
💬 Have you been diagnosed after Long Covid?
#Covid uncovered what many already knew — #PoTS changes everything.
Many with #LongCovid are now being diagnosed with #PoTS — causing dizziness, brain fog, racing heart, fatigue + more.
💬 Have you been diagnosed after Long Covid?
Reposted by @BendyHEDS&Co
On NBA star Kristaps Porziņģis who has been diagnosed with #POTS
#MEcfs #LongCovid
mas.to/@brianvastag...
#MEcfs #LongCovid
mas.to/@brianvastag...
October 25, 2025 at 12:29 PM
On NBA star Kristaps Porziņģis who has been diagnosed with #POTS
#MEcfs #LongCovid
mas.to/@brianvastag...
#MEcfs #LongCovid
mas.to/@brianvastag...
Reposted by @BendyHEDS&Co
Francie Fitzgerald speaks on the experience of living with #hypermobileEhlersDanlossyndrome (hEDS) and #POTS for the past 13 years; highlighting the diagnostic odyssey and the arduous process of finding effective treatments. youtu.be/Qa-dfd2Nl2k?...
2023 Living with hEDS and HSD: POTS - Francie Fitzgerald
YouTube video by The Ehlers-Danlos Society
youtu.be
October 25, 2025 at 1:30 PM
Francie Fitzgerald speaks on the experience of living with #hypermobileEhlersDanlossyndrome (hEDS) and #POTS for the past 13 years; highlighting the diagnostic odyssey and the arduous process of finding effective treatments. youtu.be/Qa-dfd2Nl2k?...
Reposted by @BendyHEDS&Co
Today is POTS Awareness Day.
We’re raising visibility for POTS and orthostatic intolerance (OI), common in ME/CFS and Long COVID.
Look back at this month’s posts & next week for more.
#POTSAwarenessDay #POTS #MECFS #LongCOVID #OI
We’re raising visibility for POTS and orthostatic intolerance (OI), common in ME/CFS and Long COVID.
Look back at this month’s posts & next week for more.
#POTSAwarenessDay #POTS #MECFS #LongCOVID #OI
October 25, 2025 at 3:57 PM
Today is POTS Awareness Day.
We’re raising visibility for POTS and orthostatic intolerance (OI), common in ME/CFS and Long COVID.
Look back at this month’s posts & next week for more.
#POTSAwarenessDay #POTS #MECFS #LongCOVID #OI
We’re raising visibility for POTS and orthostatic intolerance (OI), common in ME/CFS and Long COVID.
Look back at this month’s posts & next week for more.
#POTSAwarenessDay #POTS #MECFS #LongCOVID #OI
Reposted by @BendyHEDS&Co
A - I agree with the chronology you set out.
"by the beginning of February we are more aware of, a potential impact of, Long Covid on children"
Technical Advisory Report February 2021
#Wales #LongCovidKids #LongCovid
"by the beginning of February we are more aware of, a potential impact of, Long Covid on children"
Technical Advisory Report February 2021
#Wales #LongCovidKids #LongCovid
October 22, 2025 at 3:37 PM
A - I agree with the chronology you set out.
"by the beginning of February we are more aware of, a potential impact of, Long Covid on children"
Technical Advisory Report February 2021
#Wales #LongCovidKids #LongCovid
"by the beginning of February we are more aware of, a potential impact of, Long Covid on children"
Technical Advisory Report February 2021
#Wales #LongCovidKids #LongCovid
Reposted by @BendyHEDS&Co
The regime wants you to focus on their accounts & narrative, by engaging directly with them you are following their lead. They need the attention you give their trolling / posts to distract you from their actions.
Block them and double down on their actions, the Epstein files, and crimes. #3E
Block them and double down on their actions, the Epstein files, and crimes. #3E
Block list for Trump regime government accounts. How to Dismantle a Dictatorship, Step 4: Block validation. #3E bsky.app/profile/did:...
October 18, 2025 at 9:04 AM
The regime wants you to focus on their accounts & narrative, by engaging directly with them you are following their lead. They need the attention you give their trolling / posts to distract you from their actions.
Block them and double down on their actions, the Epstein files, and crimes. #3E
Block them and double down on their actions, the Epstein files, and crimes. #3E
Reposted by @BendyHEDS&Co
From the OMF-Supported Medical Education Resource Center (MERC) at Bateman Horne Center:
Orthostatic intolerance & #POTS are common in #MECFS & #LongCOVID. Learn signs + management tips: ow.ly/iz3b50Xb2QJ
#POTSAwarenessMonth #UnitedForME @batemanhornecenter.bsky.social
Orthostatic intolerance & #POTS are common in #MECFS & #LongCOVID. Learn signs + management tips: ow.ly/iz3b50Xb2QJ
#POTSAwarenessMonth #UnitedForME @batemanhornecenter.bsky.social
October 14, 2025 at 4:18 PM
From the OMF-Supported Medical Education Resource Center (MERC) at Bateman Horne Center:
Orthostatic intolerance & #POTS are common in #MECFS & #LongCOVID. Learn signs + management tips: ow.ly/iz3b50Xb2QJ
#POTSAwarenessMonth #UnitedForME @batemanhornecenter.bsky.social
Orthostatic intolerance & #POTS are common in #MECFS & #LongCOVID. Learn signs + management tips: ow.ly/iz3b50Xb2QJ
#POTSAwarenessMonth #UnitedForME @batemanhornecenter.bsky.social
Reposted by @BendyHEDS&Co
“Had the UK followed the same strategy and achieved the same excess cumulative death rate by March 2024 as South Korea, 69 instead of 344 deaths per 100,000, it might have prevented up to 180,000 UK deaths.”
bmjgroup.com/failure-to-f...
bmjgroup.com/failure-to-f...
Failure to focus on covid suppression led to avoidable UK deaths, says expert - BMJ Group
UK approach raises questions about medical and scientific advice Early in the covid-19 pandemic, the failure of UK government advisers to follow World Health Organization (WHO) advice and emerging evi...
bmjgroup.com
October 1, 2025 at 8:46 AM
“Had the UK followed the same strategy and achieved the same excess cumulative death rate by March 2024 as South Korea, 69 instead of 344 deaths per 100,000, it might have prevented up to 180,000 UK deaths.”
bmjgroup.com/failure-to-f...
bmjgroup.com/failure-to-f...
Reposted by @BendyHEDS&Co
I did it. I added some Keystone Cops music to this:
September 29, 2025 at 4:28 PM
I did it. I added some Keystone Cops music to this:
