Sleepy Amy
@sleepyamy.bsky.social
Pile of poor coping mechanisms in a malfunctioning meatsack.
POTS, EDS, probable ME/CFS and more 🙃 Nature lover, bird watcher, politically left. @amy_is_tired on The Other Place. Mask up! 😷
For my music, follow @amyclaromusic.bsky.social
POTS, EDS, probable ME/CFS and more 🙃 Nature lover, bird watcher, politically left. @amy_is_tired on The Other Place. Mask up! 😷
For my music, follow @amyclaromusic.bsky.social
Late to this piece but this vindicates my refusal to undergo repeat TTT to access meds for POTS. My refusal meant I was discharged from my long-time POTS specialists in London and had to go hunting for a new consultant. The new Dr was happy with an active stand instead.
Today @thesicktimes.bsky.social: really important story by
@jewstein3000.bsky.social about how the tilt table test, commonly used to diagnose POTS, can be dangerous for people with Long COVID and ME. thesicktimes.org/2025/04/08/i...
@jewstein3000.bsky.social about how the tilt table test, commonly used to diagnose POTS, can be dangerous for people with Long COVID and ME. thesicktimes.org/2025/04/08/i...
“It’s like torture”: The tilt table test could be risky for many people with Long COVID - The Sick Times
“The tilt table test is likely to be contraindicated in people with severe ME/CFS and related conditions,” Harvey said. Studies show about half of all Long COVID patients meet the diagnostic criteria ...
thesicktimes.org
July 3, 2025 at 1:58 PM
Late to this piece but this vindicates my refusal to undergo repeat TTT to access meds for POTS. My refusal meant I was discharged from my long-time POTS specialists in London and had to go hunting for a new consultant. The new Dr was happy with an active stand instead.
Do you have a Labour MP? Check if they're going to rebel against the benefit cuts or have spoken out against them 👇
labourlist.org/2025/04/spri...
labourlist.org/2025/04/spri...
Welfare reform: List of Labour MPs prepared to rebel against benefit changes - LabourList
More than 20 Labour MPs have said publicly that they will not back the government when proposed welfare reforms are voted on in Parliament.
labourlist.org
April 9, 2025 at 9:51 AM
Do you have a Labour MP? Check if they're going to rebel against the benefit cuts or have spoken out against them 👇
labourlist.org/2025/04/spri...
labourlist.org/2025/04/spri...
I'm not well enough to go to this obv but if anyone reading this is able to then pls do 👇
#WelfareNotWwarfare
Across the UK disabled people are mobilising. DPAC has a national day of Action on 26th March 2025
As we begin the resistance against Labour Government “Disability Benefits Poll Tax’
Wednesday 26th March 2025
11am
Meet at Downing Street, Whitehall London SW1A 2AA
Across the UK disabled people are mobilising. DPAC has a national day of Action on 26th March 2025
As we begin the resistance against Labour Government “Disability Benefits Poll Tax’
Wednesday 26th March 2025
11am
Meet at Downing Street, Whitehall London SW1A 2AA
March 19, 2025 at 2:00 PM
I'm not well enough to go to this obv but if anyone reading this is able to then pls do 👇
Reposted by Sleepy Amy
There is an alternative to the government's cruelty: treat disabled people with care, dignity and respect.
My piece for @mirror.co.uk
www.mirror.co.uk/news/politic...
My piece for @mirror.co.uk
www.mirror.co.uk/news/politic...
'Slashing disability benefits is a cruel political choice', writes Jeremy Corbyn
Former Labour leader Jeremy Corbyn argues none of the cuts announced today are necessary - and the government should tax the super-rich instead
www.mirror.co.uk
March 18, 2025 at 4:58 PM
There is an alternative to the government's cruelty: treat disabled people with care, dignity and respect.
My piece for @mirror.co.uk
www.mirror.co.uk/news/politic...
My piece for @mirror.co.uk
www.mirror.co.uk/news/politic...
Just pressed send on my PIP application, two months of preparation and gruelling mental effort, evidence gathering and waking up in the night panicking that I've done it all wrong... just in time for Liz Kendall to announce the cuts 🙃 ahahaha I hate this country
March 19, 2025 at 12:03 PM
Just pressed send on my PIP application, two months of preparation and gruelling mental effort, evidence gathering and waking up in the night panicking that I've done it all wrong... just in time for Liz Kendall to announce the cuts 🙃 ahahaha I hate this country
Reposted by Sleepy Amy
“I reached out to leading clinicians and some of the scientists who dedicate their time and energy, despite pitiful funding, to researching #ME #LongCovid etc I invited them to kindly share a ‘red leaf’ with us. They did not disappoint!”
Inspiring 💗
Inspiring 💗
'We shall have spring again' - Messages of hope and solidarity for 2025
“Wrong will be right, when Aslan comes in sight, At the sound of his roar, sorrows will be no more, When he bares his teeth, winter meets its death, And when he shakes his mane, we shall have spring a...
theredtreeandme.substack.com
December 31, 2024 at 11:41 AM
“I reached out to leading clinicians and some of the scientists who dedicate their time and energy, despite pitiful funding, to researching #ME #LongCovid etc I invited them to kindly share a ‘red leaf’ with us. They did not disappoint!”
Inspiring 💗
Inspiring 💗
Reposted by Sleepy Amy
Listen to disabled people - you might be surprised by some of the punitive policies that keep us in legislated poverty.
Most people think if things get really tough I will “get a second job, moonlight, sell some stuff etc”
Those options are OFF the table if disabled. There’s no contingency./3
Most people think if things get really tough I will “get a second job, moonlight, sell some stuff etc”
Those options are OFF the table if disabled. There’s no contingency./3
December 24, 2024 at 7:18 AM
Listen to disabled people - you might be surprised by some of the punitive policies that keep us in legislated poverty.
Most people think if things get really tough I will “get a second job, moonlight, sell some stuff etc”
Those options are OFF the table if disabled. There’s no contingency./3
Most people think if things get really tough I will “get a second job, moonlight, sell some stuff etc”
Those options are OFF the table if disabled. There’s no contingency./3
Reposted by Sleepy Amy
Your chances of being able bodied your entire life are slim to none. It’s always in your best interest to advocate for a more accessible world.
December 21, 2024 at 6:16 PM
Your chances of being able bodied your entire life are slim to none. It’s always in your best interest to advocate for a more accessible world.
Reposted by Sleepy Amy
For anyone who needs to hear this today.
"What I most want is for all of those who are in those dark rooms and in pain and struggling to access nutrition and so very alone- to feel our love. We are sending it to you every day."
Thread.
#PwME #SevereME #MyalgicEncephalomyelitis #LongCovid
"What I most want is for all of those who are in those dark rooms and in pain and struggling to access nutrition and so very alone- to feel our love. We are sending it to you every day."
Thread.
#PwME #SevereME #MyalgicEncephalomyelitis #LongCovid
December 20, 2024 at 5:20 PM
For anyone who needs to hear this today.
"What I most want is for all of those who are in those dark rooms and in pain and struggling to access nutrition and so very alone- to feel our love. We are sending it to you every day."
Thread.
#PwME #SevereME #MyalgicEncephalomyelitis #LongCovid
"What I most want is for all of those who are in those dark rooms and in pain and struggling to access nutrition and so very alone- to feel our love. We are sending it to you every day."
Thread.
#PwME #SevereME #MyalgicEncephalomyelitis #LongCovid
Happy Solstice all ☀️
Last year I made a Solstice altar with holly from my garden and lit a candle. This year, I'm too ill to do the same. So I'm just thinking about the return of the Sun and, from my bed, watching the blustery winds outside blow in the new celestial year. 🌬
Last year I made a Solstice altar with holly from my garden and lit a candle. This year, I'm too ill to do the same. So I'm just thinking about the return of the Sun and, from my bed, watching the blustery winds outside blow in the new celestial year. 🌬
December 21, 2024 at 1:52 PM
Happy Solstice all ☀️
Last year I made a Solstice altar with holly from my garden and lit a candle. This year, I'm too ill to do the same. So I'm just thinking about the return of the Sun and, from my bed, watching the blustery winds outside blow in the new celestial year. 🌬
Last year I made a Solstice altar with holly from my garden and lit a candle. This year, I'm too ill to do the same. So I'm just thinking about the return of the Sun and, from my bed, watching the blustery winds outside blow in the new celestial year. 🌬
Reposted by Sleepy Amy
Millions of men, women and children all over the world are desperate for a treatment or cure for a disease that has robbed them of their lives. Please support the work of the Open Medicine Foundation (www.omf.ngo) as they search for the cause and a cure.
#MyalgicEncephalomyelitis #mecfs
#MyalgicEncephalomyelitis #mecfs
December 21, 2024 at 8:14 AM
Millions of men, women and children all over the world are desperate for a treatment or cure for a disease that has robbed them of their lives. Please support the work of the Open Medicine Foundation (www.omf.ngo) as they search for the cause and a cure.
#MyalgicEncephalomyelitis #mecfs
#MyalgicEncephalomyelitis #mecfs
Reposted by Sleepy Amy
As Gaie's MP I tried everything I could to challenge this decision to send her back to prison - including writing to the prisons minister Lord Timpson and the probation service. But they would not budge a millimetre.
🧵...
www.channel4.com/news/77-year...
🧵...
www.channel4.com/news/77-year...
77-year-old Just Stop Oil protester recalled to prison for Christmas
77-year-old Gaie Delap was sentenced to 20 months in prison over a climate protest which blocked the M25 in 2022.
www.channel4.com
December 20, 2024 at 10:42 PM
As Gaie's MP I tried everything I could to challenge this decision to send her back to prison - including writing to the prisons minister Lord Timpson and the probation service. But they would not budge a millimetre.
🧵...
www.channel4.com/news/77-year...
🧵...
www.channel4.com/news/77-year...
👇 Dragged myself to the GP today for the below. She dx'd gastritis as I had epigastric tenderness on exam. She wants me to take PPIs but I'm very wary given this clusterfuck all started when I was on an acid reducer (famotidine).
Throwing this out there just in case the #ChronicIllness #NEISvoid community has any ideas:
My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n
My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n
December 20, 2024 at 4:52 PM
👇 Dragged myself to the GP today for the below. She dx'd gastritis as I had epigastric tenderness on exam. She wants me to take PPIs but I'm very wary given this clusterfuck all started when I was on an acid reducer (famotidine).
Is it conceivable for PEM to start five days after an inciting event? Or is that too long. I think I'm noticing this but can't be sure.
Is it also possible for PEM to have a dual onset e.g. feeling rough the next day, then rallying a bit, then rough again but worse? #MECFS #NEISvoid
Is it also possible for PEM to have a dual onset e.g. feeling rough the next day, then rallying a bit, then rough again but worse? #MECFS #NEISvoid
December 19, 2024 at 1:38 PM
One of the cruellest parts of this illness is not being able to tolerate emotion. So I can't even process my current decline, grieve or cry without my body reacting with inflammation and exhaustion.
December 11, 2024 at 6:13 PM
One of the cruellest parts of this illness is not being able to tolerate emotion. So I can't even process my current decline, grieve or cry without my body reacting with inflammation and exhaustion.
Reposted by Sleepy Amy
Over 2+ years of working on a biography of Elon Musk, I've learned that his ambitions are significantly grander than anyone realizes. He wants to be the first trillionaire ever. He wants to be the most famous human who ever lived. He wants to rule the world. He wants to live forever.
All literally.
All literally.
December 10, 2024 at 6:22 AM
Over 2+ years of working on a biography of Elon Musk, I've learned that his ambitions are significantly grander than anyone realizes. He wants to be the first trillionaire ever. He wants to be the most famous human who ever lived. He wants to rule the world. He wants to live forever.
All literally.
All literally.
Reposted by Sleepy Amy
Sadly a pipe dream for many if not most #ME sufferers. Too many will be alone and uncared for as friends and relatives drop away over the years. We are too difficult to love.
December 10, 2024 at 12:54 PM
Sadly a pipe dream for many if not most #ME sufferers. Too many will be alone and uncared for as friends and relatives drop away over the years. We are too difficult to love.
Reposted by Sleepy Amy
If you’re applying for PIP, the charity Turn2Us has launched The PIP Tool: a free guide to navigate the benefits process.
Their goal “is to make sure you know your rights and can afford what you need to enjoy life fully.”
Share widely! pip.turn2us.org.uk
Their goal “is to make sure you know your rights and can afford what you need to enjoy life fully.”
Share widely! pip.turn2us.org.uk
Turn2us PIP Helper
Use the Turn2us PIP Helper to learn how to manage each stage of your PIP (personal independence payment) application process.
pip.turn2us.org.uk
December 9, 2024 at 10:10 AM
If you’re applying for PIP, the charity Turn2Us has launched The PIP Tool: a free guide to navigate the benefits process.
Their goal “is to make sure you know your rights and can afford what you need to enjoy life fully.”
Share widely! pip.turn2us.org.uk
Their goal “is to make sure you know your rights and can afford what you need to enjoy life fully.”
Share widely! pip.turn2us.org.uk
Throwing this out there just in case the #ChronicIllness #NEISvoid community has any ideas:
My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n
My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n
December 6, 2024 at 4:49 PM
Throwing this out there just in case the #ChronicIllness #NEISvoid community has any ideas:
My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n
My latest deterioration, starting end of Sept, has coincided with a tight band sensation around my upper torso, just under the ribcage. I feel it all the way round - front and back. 1/n
Reposted by Sleepy Amy
We urge #Ch4Dispatches to rectify their mistakes and address our concerns in a follow-up program. See our joint open letter of complaint to @ofcom.bsky.social https://buff.ly/3ZkoIPs @inclusionbarnet.bsky.social
Complaint to Ofcom
buff.ly
December 5, 2024 at 1:14 PM
We urge #Ch4Dispatches to rectify their mistakes and address our concerns in a follow-up program. See our joint open letter of complaint to @ofcom.bsky.social https://buff.ly/3ZkoIPs @inclusionbarnet.bsky.social
Bought some new electrolytes to try for #POTS - never seen this brand before but liked the look of it as you can buy a version with no flavours, sweeteners etc.
December 5, 2024 at 10:56 AM
Bought some new electrolytes to try for #POTS - never seen this brand before but liked the look of it as you can buy a version with no flavours, sweeteners etc.
Hey #MCAS folk who take quercetin, how do you deal with its effects on iron absorption?
I supplement iron due to long standing low ferritin, and started trialling quercetin but have stopped after reading that it's so potent an inhibitor of iron absorption that it can treat *high* ferritin! :/
I supplement iron due to long standing low ferritin, and started trialling quercetin but have stopped after reading that it's so potent an inhibitor of iron absorption that it can treat *high* ferritin! :/
December 4, 2024 at 3:55 PM
Hey #MCAS folk who take quercetin, how do you deal with its effects on iron absorption?
I supplement iron due to long standing low ferritin, and started trialling quercetin but have stopped after reading that it's so potent an inhibitor of iron absorption that it can treat *high* ferritin! :/
I supplement iron due to long standing low ferritin, and started trialling quercetin but have stopped after reading that it's so potent an inhibitor of iron absorption that it can treat *high* ferritin! :/