Meg Samuelson
@coastalthinking.bsky.social
Sea-creature, shore-dweller, gardener. #LongCovid #MECFS #POTS. Engaged Buddhism.
i used to think read write teach (literatures of the South/Africa/Australasia/Indian Ocean & climate, colonialism, environment, littorals, the sea, water, women’s stories)
i used to think read write teach (literatures of the South/Africa/Australasia/Indian Ocean & climate, colonialism, environment, littorals, the sea, water, women’s stories)
Pinned
Much love and compassion for my fellow sufferers on this International #LongCovidAwarenessDay, 15 March 2025. ❤️
Thank you to the Greens for promising a #FairGoForME 🙌
No commitments yet from Labour? 🤔
#MECFS afflicts growing numbers of Australians since Covid but remains shockingly underfunded and unrecognised.
@chrispicton.bsky.social @markbutlermp.bsky.social
#Auspol #MECFS #LongCovid
No commitments yet from Labour? 🤔
#MECFS afflicts growing numbers of Australians since Covid but remains shockingly underfunded and unrecognised.
@chrispicton.bsky.social @markbutlermp.bsky.social
#Auspol #MECFS #LongCovid
The Greens support all our #MECFS #longCOVID election commitments! Research investment, clinical education, healthcare and disability support access. Thank them and urge all parties to do the same. Tag your local candidates! #FairGoForME
April 18, 2025 at 2:00 AM
Thank you to the Greens for promising a #FairGoForME 🙌
No commitments yet from Labour? 🤔
#MECFS afflicts growing numbers of Australians since Covid but remains shockingly underfunded and unrecognised.
@chrispicton.bsky.social @markbutlermp.bsky.social
#Auspol #MECFS #LongCovid
No commitments yet from Labour? 🤔
#MECFS afflicts growing numbers of Australians since Covid but remains shockingly underfunded and unrecognised.
@chrispicton.bsky.social @markbutlermp.bsky.social
#Auspol #MECFS #LongCovid
#AusPol #MECFS #LongCovid
This is a shocking statistic 👇
PASC MECFS has left me profoundly disabled.
This highly debilitating disease urgently needs more recognition and support!
@markbutlermp.bsky.social
This is a shocking statistic 👇
PASC MECFS has left me profoundly disabled.
This highly debilitating disease urgently needs more recognition and support!
@markbutlermp.bsky.social
@markbutlermp.bsky.social
"Just 3 per cent of #mecfs patients surveyed by Emerge Australia in 2019 said they were able to access the National Disability Insurance Scheme (NDIS) — a troubling figure ... given how physically and cognitively disabling ME/CFS can be."
www.abc.net.au/news/2025-04...
"Just 3 per cent of #mecfs patients surveyed by Emerge Australia in 2019 said they were able to access the National Disability Insurance Scheme (NDIS) — a troubling figure ... given how physically and cognitively disabling ME/CFS can be."
www.abc.net.au/news/2025-04...
Sarah's 'career change' sounds like a dream, until you hear her full story
What about the people who change their career not to scratch some creative or philanthropic itch or make a truckload of money, but out of necessity — because illness or injury derailed or destroyed th...
www.abc.net.au
April 10, 2025 at 3:45 AM
#AusPol #MECFS #LongCovid
This is a shocking statistic 👇
PASC MECFS has left me profoundly disabled.
This highly debilitating disease urgently needs more recognition and support!
@markbutlermp.bsky.social
This is a shocking statistic 👇
PASC MECFS has left me profoundly disabled.
This highly debilitating disease urgently needs more recognition and support!
@markbutlermp.bsky.social
Reposted by Meg Samuelson
💥Join the Wild Socks Challenge!
1️⃣ Snap a pic in your wildest socks
2️⃣ Post on social media, tag @BatemanHorneCenter, & use #WildSocksForMECFS
3️⃣ Donate $10 to support ME/CFS research via BHC's Kudoboard! loom.ly/d4vXRFI
Let’s raise awareness together! #WildSocksForMECFS
1️⃣ Snap a pic in your wildest socks
2️⃣ Post on social media, tag @BatemanHorneCenter, & use #WildSocksForMECFS
3️⃣ Donate $10 to support ME/CFS research via BHC's Kudoboard! loom.ly/d4vXRFI
Let’s raise awareness together! #WildSocksForMECFS
Kudoboard for Bateman Horne Center | Kudoboard
Kudoboard is an online replacement for the greeting card that you pass around and sign!
loom.ly
March 24, 2025 at 6:39 PM
💥Join the Wild Socks Challenge!
1️⃣ Snap a pic in your wildest socks
2️⃣ Post on social media, tag @BatemanHorneCenter, & use #WildSocksForMECFS
3️⃣ Donate $10 to support ME/CFS research via BHC's Kudoboard! loom.ly/d4vXRFI
Let’s raise awareness together! #WildSocksForMECFS
1️⃣ Snap a pic in your wildest socks
2️⃣ Post on social media, tag @BatemanHorneCenter, & use #WildSocksForMECFS
3️⃣ Donate $10 to support ME/CFS research via BHC's Kudoboard! loom.ly/d4vXRFI
Let’s raise awareness together! #WildSocksForMECFS
Reposted by Meg Samuelson
n 2015, Dr. Bateman vowed to wear wild socks until we had a biomarker for ME/CFS. These socks are a symbol of hope & resilience. Watch the video for the full story!
Celebrate 10 years of BHC, donate $10, & raise awareness for ME/CFS! 🔗 loom.ly/d4vXRFI
#WildSocksforMECFS
Celebrate 10 years of BHC, donate $10, & raise awareness for ME/CFS! 🔗 loom.ly/d4vXRFI
#WildSocksforMECFS
March 20, 2025 at 8:42 PM
n 2015, Dr. Bateman vowed to wear wild socks until we had a biomarker for ME/CFS. These socks are a symbol of hope & resilience. Watch the video for the full story!
Celebrate 10 years of BHC, donate $10, & raise awareness for ME/CFS! 🔗 loom.ly/d4vXRFI
#WildSocksforMECFS
Celebrate 10 years of BHC, donate $10, & raise awareness for ME/CFS! 🔗 loom.ly/d4vXRFI
#WildSocksforMECFS
💙🧦 #WildSocksForMECFS Awareness
@BatemanHorneCenter 🧦💙
Millions of people live with ME/CFS, a debilitating disease that urgently needs more research, better care, and greater awareness.
Penguin socks 🐧 because @BatemanHorneCenter is a beacon for #pwME #pwLC even in the #SouthernHem 🩵
@BatemanHorneCenter 🧦💙
Millions of people live with ME/CFS, a debilitating disease that urgently needs more research, better care, and greater awareness.
Penguin socks 🐧 because @BatemanHorneCenter is a beacon for #pwME #pwLC even in the #SouthernHem 🩵
March 26, 2025 at 7:10 AM
💙🧦 #WildSocksForMECFS Awareness
@BatemanHorneCenter 🧦💙
Millions of people live with ME/CFS, a debilitating disease that urgently needs more research, better care, and greater awareness.
Penguin socks 🐧 because @BatemanHorneCenter is a beacon for #pwME #pwLC even in the #SouthernHem 🩵
@BatemanHorneCenter 🧦💙
Millions of people live with ME/CFS, a debilitating disease that urgently needs more research, better care, and greater awareness.
Penguin socks 🐧 because @BatemanHorneCenter is a beacon for #pwME #pwLC even in the #SouthernHem 🩵
Reposted by Meg Samuelson
Stand with South Africa against Trump's wrath mg.co.za/thought-lead...
Stand with South Africa against Trump’s wrath
To allow South Africa to be isolated and punished would be to surrender to the imperial logic that seeks to divide and conquer all who resist.
mg.co.za
March 18, 2025 at 3:06 PM
Stand with South Africa against Trump's wrath mg.co.za/thought-lead...
Much love and compassion for my fellow sufferers on this International #LongCovidAwarenessDay, 15 March 2025. ❤️
March 15, 2025 at 5:04 AM
Much love and compassion for my fellow sufferers on this International #LongCovidAwarenessDay, 15 March 2025. ❤️
🩵
This International Women's Day, we celebrate the strength, resilience, and contributions of women who are living with and researching long Covid.
🧵 1/6
#IWD2025 #InternationalWomensDay #ILCAD2025
🧵 1/6
#IWD2025 #InternationalWomensDay #ILCAD2025
March 8, 2025 at 11:13 PM
🩵
“My average (long COVID) patient is previously very fit, very successful, and desperate to get back to normal life,” he says. “The people I’m looking at are actually incredibly motivated, the movers and shakers of society, and we lose them to our detriment.” 😭😭💔💔
‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten
March 3, 2025 at 11:08 PM
Reposted by Meg Samuelson
In his book 'Good Citizens', Thich Nhat Hanh shares words of encouragement to build an international solidarity movement based on a shared sense of compassion, mindful consumption & right action. 🌍
👉🏽 www.parallax.org/product/good... @parallax.org
👉🏽 Discover more teachings via plumvillage.app 🌞
👉🏽 www.parallax.org/product/good... @parallax.org
👉🏽 Discover more teachings via plumvillage.app 🌞
February 10, 2025 at 12:34 PM
In his book 'Good Citizens', Thich Nhat Hanh shares words of encouragement to build an international solidarity movement based on a shared sense of compassion, mindful consumption & right action. 🌍
👉🏽 www.parallax.org/product/good... @parallax.org
👉🏽 Discover more teachings via plumvillage.app 🌞
👉🏽 www.parallax.org/product/good... @parallax.org
👉🏽 Discover more teachings via plumvillage.app 🌞
🙌🙌
Permanent shutdown of all #HIV programmes. Time to organise a global day of action against US corporations
bhekisisa.org/health-news-...
Cruel. Evil. Fuckers.
bhekisisa.org/health-news-...
Cruel. Evil. Fuckers.
BREAKING: Trump orders USAID-funded HIV organisations in SA to shut down - Bhekisisa
In today’s newsletter, Mia Malan explains how US President Donald Trump ordered USAID-funded HIV organisations in SA to shut down. Sign up for our newsletter today. THIS IS A BREAKING, DEVELOPING STOR...
bhekisisa.org
March 2, 2025 at 3:53 AM
🙌🙌
🙌
1/ The nascent Tesla boycott movement got me thinking back to the 80s anti-apartheid movement. How it took off and literally changed the world.
If the South African apartheid regime could be brought down, perhaps one South African oligarch could be? www.motherjones.com/politics/202...
If the South African apartheid regime could be brought down, perhaps one South African oligarch could be? www.motherjones.com/politics/202...
Elon Musk, apartheid, and America's new boycott movement
If you think mass protests can’t combat evil, remember what we did in the 1980s.
www.motherjones.com
March 1, 2025 at 11:19 PM
🙌
Yes, this 👇👏Great article by @vashetc.bsky.social
#MECFS
#LongCovid
#pwME #pwLC
#politicalgrief
#disabilityactivism
& living with energy limiting illness in these unraveling times…
#MECFS
#LongCovid
#pwME #pwLC
#politicalgrief
#disabilityactivism
& living with energy limiting illness in these unraveling times…
thank you for this magnificent piece. May all folks with MECFS and Long Covid see it.
I actually started crying seeing my story as the featured story on The Forges website just now 😭😭 I can’t believe I almost gave up writing for good.
If you go to forgeorganizing.org it’ll be the first thing that comes up.
That’s wild to me.
If you go to forgeorganizing.org it’ll be the first thing that comes up.
That’s wild to me.
February 14, 2025 at 4:27 AM
Yes, this 👇👏Great article by @vashetc.bsky.social
#MECFS
#LongCovid
#pwME #pwLC
#politicalgrief
#disabilityactivism
& living with energy limiting illness in these unraveling times…
#MECFS
#LongCovid
#pwME #pwLC
#politicalgrief
#disabilityactivism
& living with energy limiting illness in these unraveling times…
Australian ME/CFS organisations adopt Election Commitments for the sector. This gives a coordinated message for advocacy efforts and lobbying. Learn more: https://vist.ly/3murk57
February 12, 2025 at 3:46 AM
Yes, this 👇
And so many millions more left disabled & without treatment #CovidIsNotOver
#LongCovid #pwLC
And so many millions more left disabled & without treatment #CovidIsNotOver
#LongCovid #pwLC
It is truly wild that it is estimated that more than 20 million people died of Covid and the prevailing vibe is that the world overreacted. That is an astonishing toll! More people died of Covid in the US than in the Civil War. www.pbs.org/newshour/hea...
5 years after it appeared, things we know and still don't know about COVID
Five years after the virus that causes COVID emerged in China it still holds some mysteries.
www.pbs.org
January 5, 2025 at 5:02 AM
Yes, this 👇
And so many millions more left disabled & without treatment #CovidIsNotOver
#LongCovid #pwLC
And so many millions more left disabled & without treatment #CovidIsNotOver
#LongCovid #pwLC
"And, of course, if one gets Covid and develops long Covid, they might become disabled and thus disposable under the same narrative that helped sicken them in the first place."
Three Years Later, Covid-19 Is Still a Health Threat. Journalism Needs to Reflect That - Nieman Reports
Too much coverage minimizes the health risks researchers attribute to the virus
buff.ly
December 28, 2024 at 12:52 AM
This is so true!
We generally don’t fear PEM enough. On a better day, we’re all too inclined to throw caution to the wind & have a shower (if severe), or go out & socialise (if mild). Although we intellectually know PEM will be incoming we can’t really believe it will happen until boom the next day or the day after.
November 19, 2024 at 5:34 AM
This is so true!
Also remember: your patient experiencing the abnormal physiological systems has to constantly remind *themselves* of this fact, whilst desperately *wanting* to do more!
We need help to stay on track, not to go off the rails!
We need help to stay on track, not to go off the rails!
Remember: you’re working with abnormal physiological systems that have lost the ability to recover and adapt to stimulation. Telling patients to do more on any kind of schedule—externally referenced, symptom-titrated, etc.—loses sight of this *basic fact* of PEM/PENE to the detriment of the patient.
November 17, 2024 at 12:07 AM
Reposted by Meg Samuelson
It will take ALL OF US to show that we are support the NIH Roadmap to fight to fund research into treatments & a cure.
If you have #MECFS or #LongCOVID or care about people who do, please sign & share!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
If you have #MECFS or #LongCOVID or care about people who do, please sign & share!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
November 14, 2024 at 2:58 PM
It will take ALL OF US to show that we are support the NIH Roadmap to fight to fund research into treatments & a cure.
If you have #MECFS or #LongCOVID or care about people who do, please sign & share!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
If you have #MECFS or #LongCOVID or care about people who do, please sign & share!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
Reposted by Meg Samuelson
✨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 Meg Samuelson
If you follow Covid, Long Covid and/or ME/CFS, you want to follow putrinolab. They are the real thing.
Ok ok Imma try to be on here a little more, sharing infection-associated chronic condition research and news for those with Long COVID, ME/CFS, chronic tick- and vector-borne illness and more. Bear with me as I figure it out 🙏🏻
November 10, 2024 at 8:08 PM
If you follow Covid, Long Covid and/or ME/CFS, you want to follow putrinolab. They are the real thing.
Reposted by Meg Samuelson
Neat 🧵 from @cleanairclub.bsky.social on Twitter:
"50+ ways to show up for people with Long Covid & ME/CFS.
Over 400 million people around the world have Long Covid, and millions more have ME/CFS. Here are concrete ways you can show up for them..."
threadreaderapp.com/thread/18517...
"50+ ways to show up for people with Long Covid & ME/CFS.
Over 400 million people around the world have Long Covid, and millions more have ME/CFS. Here are concrete ways you can show up for them..."
threadreaderapp.com/thread/18517...
Thread by @Clean_Air_Club_ on Thread Reader App
@Clean_Air_Club_: ☁️ 50+ ways to show up for people with Long Covid & ME/CFS ☁️ Over 400 million people around the world have Long Covid, and millions more have ME/CFS. Here are concrete ways you can....
threadreaderapp.com
October 30, 2024 at 9:57 PM
Neat 🧵 from @cleanairclub.bsky.social on Twitter:
"50+ ways to show up for people with Long Covid & ME/CFS.
Over 400 million people around the world have Long Covid, and millions more have ME/CFS. Here are concrete ways you can show up for them..."
threadreaderapp.com/thread/18517...
"50+ ways to show up for people with Long Covid & ME/CFS.
Over 400 million people around the world have Long Covid, and millions more have ME/CFS. Here are concrete ways you can show up for them..."
threadreaderapp.com/thread/18517...
Reposted by Meg Samuelson
These FAQs on what you need to know if you’re still sick (or suddenly become sick) weeks/months after having Covid are excellent, vetted by both patients leading Long Covid experts from Hopkins, Mount Sinai, and more.
Please share, at present it’s so hard for people to find good info.
Please share, at present it’s so hard for people to find good info.
September 20, 2024 at 8:39 PM
These FAQs on what you need to know if you’re still sick (or suddenly become sick) weeks/months after having Covid are excellent, vetted by both patients leading Long Covid experts from Hopkins, Mount Sinai, and more.
Please share, at present it’s so hard for people to find good info.
Please share, at present it’s so hard for people to find good info.
Reposted by Meg Samuelson
ME/CFS gets miniscule funding relative to the number of people it affects.
Without more funding, this will only get worse as more and more people develop Long COVID, one potential symptom of which is ME/CFS.
Without more funding, this will only get worse as more and more people develop Long COVID, one potential symptom of which is ME/CFS.
The impact of ME/CFS versus funding
Illnesses listed on the bottom if you can't see it:
Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS.
From Jeffrey Tran's video (warning: is a bit noisy) www.tiktok.com/@poisedleft/...
#MEcfs #CFS #PwME
Illnesses listed on the bottom if you can't see it:
Sickle Cell Disease, Brain Cancer, Parkinson's, Multiple Sclerosis, HIV/AIDS, ME/CFS.
From Jeffrey Tran's video (warning: is a bit noisy) www.tiktok.com/@poisedleft/...
#MEcfs #CFS #PwME
September 21, 2024 at 12:03 AM
ME/CFS gets miniscule funding relative to the number of people it affects.
Without more funding, this will only get worse as more and more people develop Long COVID, one potential symptom of which is ME/CFS.
Without more funding, this will only get worse as more and more people develop Long COVID, one potential symptom of which is ME/CFS.
Reposted by Meg Samuelson
Lee Colligan recently completed a marathon 2500km walk around Ireland in memory of his brother Lee & to raise money for ME charities. Here is a moving image he shared.
Lee’s donation pages:
www.idonate.ie/fundraiser/L...
&
joshcolligan.muchloved.com
#MEcfs #PwME #CFS #SevereME
Lee’s donation pages:
www.idonate.ie/fundraiser/L...
&
joshcolligan.muchloved.com
#MEcfs #PwME #CFS #SevereME
July 17, 2024 at 9:23 PM
Lee Colligan recently completed a marathon 2500km walk around Ireland in memory of his brother Lee & to raise money for ME charities. Here is a moving image he shared.
Lee’s donation pages:
www.idonate.ie/fundraiser/L...
&
joshcolligan.muchloved.com
#MEcfs #PwME #CFS #SevereME
Lee’s donation pages:
www.idonate.ie/fundraiser/L...
&
joshcolligan.muchloved.com
#MEcfs #PwME #CFS #SevereME