TrixyB
@trixyb.bsky.social
#pwme #mecfs 💙
Trying to find small joys while living with chronic illness
Mostly housebound
Love ginger cordial
#vintage #retro
#television
#crochet #dogmum 🐾
Trying to find small joys while living with chronic illness
Mostly housebound
Love ginger cordial
#vintage #retro
#television
#crochet #dogmum 🐾
In a previous life I would of loved the mini heatwave, sunbathing beer gardens, bbqs
Now I'm in a darkened room with a fan for company #pwme #MyalgicEncephalomyelitis
#chronicillness #mecfs
#notreatment #nobodycares
Now I'm in a darkened room with a fan for company #pwme #MyalgicEncephalomyelitis
#chronicillness #mecfs
#notreatment #nobodycares
June 20, 2025 at 8:15 AM
In a previous life I would of loved the mini heatwave, sunbathing beer gardens, bbqs
Now I'm in a darkened room with a fan for company #pwme #MyalgicEncephalomyelitis
#chronicillness #mecfs
#notreatment #nobodycares
Now I'm in a darkened room with a fan for company #pwme #MyalgicEncephalomyelitis
#chronicillness #mecfs
#notreatment #nobodycares
My legs feel hot and my feet are tingling , my head is full of thoughts of things I can no longer do, just simple things like doing the weekly shop that where once so mundane, I miss so much of every day life #pwme #chronicillness #MyalgicEncephalomyelitis
June 12, 2025 at 10:07 PM
My legs feel hot and my feet are tingling , my head is full of thoughts of things I can no longer do, just simple things like doing the weekly shop that where once so mundane, I miss so much of every day life #pwme #chronicillness #MyalgicEncephalomyelitis
I feel like I'm melting into the sofa with concrete running through my veins #pwme #MyalgicEncephalomyelitis
June 11, 2025 at 4:01 PM
I feel like I'm melting into the sofa with concrete running through my veins #pwme #MyalgicEncephalomyelitis
Reposted by TrixyB
The effects of #ME are vast. Families are split apart, friends turn their backs, employers can’t put up with unreliable employees. Worst of all Drs here been taught that it’s an imaginary illness because standard tests show that there’s no problem. There is! #FundThePlan 🙏
February 22, 2025 at 12:20 PM
The effects of #ME are vast. Families are split apart, friends turn their backs, employers can’t put up with unreliable employees. Worst of all Drs here been taught that it’s an imaginary illness because standard tests show that there’s no problem. There is! #FundThePlan 🙏
January 15, 2025 at 10:34 PM
Reposted by TrixyB
Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
December 14, 2024 at 12:23 PM
Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
January 7, 2025 at 10:56 AM
Reposted by TrixyB
Living with ME is difficult enough without having incorrect and dangerous guidelines still out there. Please help by signing this petition to get rid of the Cochrane review known to be harmful to patients and re start a new review and assessment.
chng.it/BxJ4Wsttgk
chng.it/BxJ4Wsttgk
Sign the Petition
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
chng.it
December 17, 2024 at 2:32 PM
Living with ME is difficult enough without having incorrect and dangerous guidelines still out there. Please help by signing this petition to get rid of the Cochrane review known to be harmful to patients and re start a new review and assessment.
chng.it/BxJ4Wsttgk
chng.it/BxJ4Wsttgk
Reposted by TrixyB
ME peeps...
If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again?
If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again?
December 15, 2024 at 1:52 PM
ME peeps...
If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again?
If you accidentally found something that, legally, made you feel wonderfully ME free and energised for an hour or two without major PEM, despite being potentially risky and having possible longer term side effects, would you try it again?
December 15, 2024 at 12:36 PM
Reposted by TrixyB
Grateful to @gwynnemp.bsky.social for a really productive discussion today. It’s filled me with hope that there are people at the top genuinely fighting for change in the care of #LongCovid and #ME.
Hoping to be part of that change, will keep you all posted 🙏🏽
Hoping to be part of that change, will keep you all posted 🙏🏽
December 13, 2024 at 7:50 PM
Grateful to @gwynnemp.bsky.social for a really productive discussion today. It’s filled me with hope that there are people at the top genuinely fighting for change in the care of #LongCovid and #ME.
Hoping to be part of that change, will keep you all posted 🙏🏽
Hoping to be part of that change, will keep you all posted 🙏🏽
@erinmg.bsky.social I had plans for tomorrow to go out (in my wheelchair husband pushing) to a little garden centre for a festival afternoon tea, unfortunately it's not looking very hopeful now #pwme #MyalgicEncephalomyelitis #mecfs #PEM
December 10, 2024 at 11:59 AM
@erinmg.bsky.social I had plans for tomorrow to go out (in my wheelchair husband pushing) to a little garden centre for a festival afternoon tea, unfortunately it's not looking very hopeful now #pwme #MyalgicEncephalomyelitis #mecfs #PEM
December 1, 2024 at 10:35 AM
Saturdays little moment of cuteness 😁🦉💙
November 30, 2024 at 12:15 PM
Saturdays little moment of cuteness 😁🦉💙
Reposted by TrixyB
The Evening Telegraph, Derby, England. 29th November 1991. #myalgicencephalomyelitis #cfsme #myalgice #mecfs
""Both my husband Pete and I went to bed with a bout of flu one Thursday night, but he was up by the Sunday. I was worse...by the next week I had pneumonia"".
""Both my husband Pete and I went to bed with a bout of flu one Thursday night, but he was up by the Sunday. I was worse...by the next week I had pneumonia"".
November 29, 2024 at 12:26 AM
The Evening Telegraph, Derby, England. 29th November 1991. #myalgicencephalomyelitis #cfsme #myalgice #mecfs
""Both my husband Pete and I went to bed with a bout of flu one Thursday night, but he was up by the Sunday. I was worse...by the next week I had pneumonia"".
""Both my husband Pete and I went to bed with a bout of flu one Thursday night, but he was up by the Sunday. I was worse...by the next week I had pneumonia"".
Reposted by TrixyB
Are you following #ThereForME on our new social media accounts? 🎄
Find links here: linktr.ee/ThereForME
#ThereForMEAdventCalendar
Find links here: linktr.ee/ThereForME
#ThereForMEAdventCalendar
November 28, 2024 at 9:00 AM
Are you following #ThereForME on our new social media accounts? 🎄
Find links here: linktr.ee/ThereForME
#ThereForMEAdventCalendar
Find links here: linktr.ee/ThereForME
#ThereForMEAdventCalendar
Reposted by TrixyB
Honoured to have been included in this article by Jeremy Jeffs on his photography project.
wellcomecollection.org/stories/livi...
#MyalgicE
wellcomecollection.org/stories/livi...
#MyalgicE
Living with ME
Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.
wellcomecollection.org
November 28, 2024 at 11:15 AM
Honoured to have been included in this article by Jeremy Jeffs on his photography project.
wellcomecollection.org/stories/livi...
#MyalgicE
wellcomecollection.org/stories/livi...
#MyalgicE
Reposted by TrixyB
The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity.
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Earlier this month, the chairman of the United Kingdom charity the ME Association, Neil Riley, published a controversial op-ed in the charity’s magazine arguing that many people with Myalgic Encephalo...
thesicktimes.org
November 27, 2024 at 10:41 AM
The #ME Association, a national organisation, has been dominated by this man so long it's transformed into a mental health charity.
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
ME is not a mental illness.
I wasted months meeting MEA reps (Trustees & employees) pre inquest. 2/3 resigned after listening to me.
thesicktimes.org/2024/11/22/a...
Reposted by TrixyB
It may be worth sharing any Black Friday online sales purchases which could be helpful & have *practical* benefits for #pwME #ME #MEcfs & #LongCovid if anyone has any suggestions or good recommendations
Do share links
Do share links
November 25, 2024 at 10:22 AM
It may be worth sharing any Black Friday online sales purchases which could be helpful & have *practical* benefits for #pwME #ME #MEcfs & #LongCovid if anyone has any suggestions or good recommendations
Do share links
Do share links
Reposted by TrixyB
I registered quite a few years ago now and it was incredibly straightforward to do. Please do consider it.
🚨8-year-old Lilian has a rare blood disorder & needs a #lifesaver! Her stem cell donor match fell through, leaving her family devastated💔
Now, she’s back at square one but you can help by registering as a DKMS stem cell donor. It’s easy to do🙏
www.dkms.org.uk/get-involved...
Now, she’s back at square one but you can help by registering as a DKMS stem cell donor. It’s easy to do🙏
www.dkms.org.uk/get-involved...
November 24, 2024 at 3:40 PM
I registered quite a few years ago now and it was incredibly straightforward to do. Please do consider it.
Reposted by TrixyB
If you have ME/CFS, save this clip for emergency situations to get a doctor informed on M.E. in less than a minute:
youtu.be/NRSGCcRl1dQ #pwME #MECFS
youtu.be/NRSGCcRl1dQ #pwME #MECFS
ME on BBC Breakfast with Sarah Boothby and Dr Binita Kane
YouTube video by Long Covid Advocacy
youtu.be
November 24, 2024 at 2:16 AM
If you have ME/CFS, save this clip for emergency situations to get a doctor informed on M.E. in less than a minute:
youtu.be/NRSGCcRl1dQ #pwME #MECFS
youtu.be/NRSGCcRl1dQ #pwME #MECFS
Reposted by TrixyB
Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness
What it’s like to live with severe ME
I have lived with ME (also known as ME/CFS) for over twelve years now. In 2017 it turned severe. Here’s what it’s like.
www.bedperspective.com
November 22, 2024 at 9:04 AM
Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness
Reposted by TrixyB
The History of ME.
How a serious physical disease was hijacked by powerful influential psychiatrists leading to neglect and abuse of an entire patient population. Deaths. Collusion with government. A story that urgently needs telling.
#ME #MECFS #LongCovid #journalists
medium.com/@abrokenbatt...
How a serious physical disease was hijacked by powerful influential psychiatrists leading to neglect and abuse of an entire patient population. Deaths. Collusion with government. A story that urgently needs telling.
#ME #MECFS #LongCovid #journalists
medium.com/@abrokenbatt...
ME/CFS Scandal Explainer
https://youtu.be/e0FNw0z3PVw
medium.com
November 22, 2024 at 9:52 AM
The History of ME.
How a serious physical disease was hijacked by powerful influential psychiatrists leading to neglect and abuse of an entire patient population. Deaths. Collusion with government. A story that urgently needs telling.
#ME #MECFS #LongCovid #journalists
medium.com/@abrokenbatt...
How a serious physical disease was hijacked by powerful influential psychiatrists leading to neglect and abuse of an entire patient population. Deaths. Collusion with government. A story that urgently needs telling.
#ME #MECFS #LongCovid #journalists
medium.com/@abrokenbatt...