@melmadds.bsky.social
From Xitter (GiftedHand - can’t seem to delete yet) 80% homebound/ multiple chronic long term illness #ME #IBD dx 2010 #POTS #LC multiply #Neurodivergent /advocate / London mum artist, photographer,coach on one long sabbatical. Dabbling in landscape design
Reposted
Trump just orchestrated one of the most shameful moments in US history.
We need *all leaders* outside the US to stand up to Trump.
For that we need to show they have our backing. Add your name and share this link widely, it has never been more critical to have our voices heard:
WorldVsTrump.com
We need *all leaders* outside the US to stand up to Trump.
For that we need to show they have our backing. Add your name and share this link widely, it has never been more critical to have our voices heard:
WorldVsTrump.com
World leaders: stand up to Trump, starting *now*
Donald Trump is a bully. And like any bully…we need to stand up to him. If we don’t, our international world order is in danger. He’s already threatened to annex Canada, Greenland, and the Panama Can
WorldVsTrump.com
February 28, 2025 at 8:01 PM
Trump just orchestrated one of the most shameful moments in US history.
We need *all leaders* outside the US to stand up to Trump.
For that we need to show they have our backing. Add your name and share this link widely, it has never been more critical to have our voices heard:
WorldVsTrump.com
We need *all leaders* outside the US to stand up to Trump.
For that we need to show they have our backing. Add your name and share this link widely, it has never been more critical to have our voices heard:
WorldVsTrump.com
Reposted
Wow.
"160 participants [...] exercising 5 days a week for up to 30 mins / day for 24 weeks. If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve (5)."
"160 participants [...] exercising 5 days a week for up to 30 mins / day for 24 weeks. If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve (5)."
CBT/ GET research on #ME #PAIS #LongCovid is groundbreaking, but nobody knows.
It proves that
ME/ LC is
Not psychological
But rather a fysiological disease❗️
Yet another thought provoking piece of @MarkVink
www.frontiersin.org/journals/hum...
“they did not see what their own results showed. ⬇️
It proves that
ME/ LC is
Not psychological
But rather a fysiological disease❗️
Yet another thought provoking piece of @MarkVink
www.frontiersin.org/journals/hum...
“they did not see what their own results showed. ⬇️
Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long Covid are physical diseases, yet no one is aware of that
The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...
www.frontiersin.org
January 15, 2025 at 8:50 PM
Wow.
"160 participants [...] exercising 5 days a week for up to 30 mins / day for 24 weeks. If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve (5)."
"160 participants [...] exercising 5 days a week for up to 30 mins / day for 24 weeks. If there would be no underlying disease, and patients were merely deconditioned, then such an exercise regime would lead to a very substantial improvement in fitness. However, fitness did not improve (5)."
Reposted
Note that this is an independent developer building this. But that's very cool. This is what an open network enables.
January 15, 2025 at 8:02 PM
Note that this is an independent developer building this. But that's very cool. This is what an open network enables.
Reposted
Health Rising: 'A “Scarred Landscape” … Epigenetic T-Cell Study Moves the ME/CFS Field Forward'
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
A "Scarred Landscape" ... Epigenetic T-Cell Study Moves the ME/CFS Field Forward - Health Rising
Evidence indicating that the T-cells in ME/CFS are exhausted could lead to new treatment options.
www.healthrising.org
January 15, 2025 at 10:31 PM
Health Rising: 'A “Scarred Landscape” … Epigenetic T-Cell Study Moves the ME/CFS Field Forward'
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
Reposted
Accommodations in a nutshell
Artist: @amiiillustrates.bsky.social
#accommodations #disability #disabled
Artist: @amiiillustrates.bsky.social
#accommodations #disability #disabled
January 15, 2025 at 11:36 PM
Accommodations in a nutshell
Artist: @amiiillustrates.bsky.social
#accommodations #disability #disabled
Artist: @amiiillustrates.bsky.social
#accommodations #disability #disabled
Reposted
![a picture of a tangled scribble guy [my nervous system in November]
a picture of a tangled scribble guy with Christmas lights all over him [my nervous system in December]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:dbzmdmsaz6lkhb4tv3culzme/bafkreibn5wslsaxki22k3p2wzqgdl6qwlezzcruc742757nb3isp3tzvrm@jpeg)
December 8, 2024 at 1:56 PM
Reposted
"It's Just Anxiety"... Or Perhaps They've Misdiagnosed You
Fighting for a diagnosis? Getting accused of being anxious, depressed or told it’s all in your head?
This is the article for you. It includes tips for dealing with doctors, how to cope with the tilt table test & other key diagnostics:
/12
Fighting for a diagnosis? Getting accused of being anxious, depressed or told it’s all in your head?
This is the article for you. It includes tips for dealing with doctors, how to cope with the tilt table test & other key diagnostics:
/12
"It's Just Anxiety"... Or Perhaps They've Misdiagnosed You
Patients with POTS are frequently misdiagnosed as anxious. An exploration of the diagnostic process, the gaslighting and barriers patients face when dealing with this debilitating condition.
www.disabledginger.com
December 7, 2024 at 3:29 AM
"It's Just Anxiety"... Or Perhaps They've Misdiagnosed You
Fighting for a diagnosis? Getting accused of being anxious, depressed or told it’s all in your head?
This is the article for you. It includes tips for dealing with doctors, how to cope with the tilt table test & other key diagnostics:
/12
Fighting for a diagnosis? Getting accused of being anxious, depressed or told it’s all in your head?
This is the article for you. It includes tips for dealing with doctors, how to cope with the tilt table test & other key diagnostics:
/12
They blame us, tell us some anecdotal QuickFix when they don’t understand the complexities feel like they’re being nice. Then they want us to explain more and more and more. Then where the problem because we’ve lectured them
“What you’re saying doesn’t make sense - you just need to do X”
Why do ableds always say this to us?!? When things don’t make sense it’s because they aren’t listening. Or they can’t possibly fathom the realities of living with disabilities.
Yet rather than empathizing & learning - they blame us.
Why do ableds always say this to us?!? When things don’t make sense it’s because they aren’t listening. Or they can’t possibly fathom the realities of living with disabilities.
Yet rather than empathizing & learning - they blame us.
December 7, 2024 at 5:57 PM
They blame us, tell us some anecdotal QuickFix when they don’t understand the complexities feel like they’re being nice. Then they want us to explain more and more and more. Then where the problem because we’ve lectured them
Reposted
“When you’re living with POTS - gravity is NOT your friend. Our bodies do not function properly when upright. most of us feel our best when we’re horizontal.
Unfortunately - the world is not designed for people who need to be horizontal. Adaptation is key - and it can be a long and hard road”
Unfortunately - the world is not designed for people who need to be horizontal. Adaptation is key - and it can be a long and hard road”
Learning to Live Horizontally - Your Guide to All Things POTS
When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.
www.disabledginger.com
December 7, 2024 at 5:10 AM
“When you’re living with POTS - gravity is NOT your friend. Our bodies do not function properly when upright. most of us feel our best when we’re horizontal.
Unfortunately - the world is not designed for people who need to be horizontal. Adaptation is key - and it can be a long and hard road”
Unfortunately - the world is not designed for people who need to be horizontal. Adaptation is key - and it can be a long and hard road”
Anything from the toxic positivity playbook is a nope thank you very much!!
Yes. Don’t tell someone “at least you’re not dealing with X,Y,Z”.
It minimizes our suffering - plus it shows that you’re not at all invested in trying to understand the depths of what we’re coping with.
We need people who will listen & attempt to empathize - not try and force us to “chin up”.
It minimizes our suffering - plus it shows that you’re not at all invested in trying to understand the depths of what we’re coping with.
We need people who will listen & attempt to empathize - not try and force us to “chin up”.
There's also those two insensitive words "at least....." we all know it could be worse or someone had it worse or.... Don't minimise people's experience
December 7, 2024 at 4:59 PM
Anything from the toxic positivity playbook is a nope thank you very much!!
Reposted
We need people to hear us and meet us at the place of I can’t.
We are unable and we need that CAN’T to be heard just as much or more than we need you to hear that we can be accommodated (who is actually doing the accommodating, cuz it’s probably the disabled person?).
We are unable and we need that CAN’T to be heard just as much or more than we need you to hear that we can be accommodated (who is actually doing the accommodating, cuz it’s probably the disabled person?).
December 2, 2024 at 2:13 AM
We need people to hear us and meet us at the place of I can’t.
We are unable and we need that CAN’T to be heard just as much or more than we need you to hear that we can be accommodated (who is actually doing the accommodating, cuz it’s probably the disabled person?).
We are unable and we need that CAN’T to be heard just as much or more than we need you to hear that we can be accommodated (who is actually doing the accommodating, cuz it’s probably the disabled person?).
Reposted
There’s a boundary that my body has that is harddddddd for people to truly honor, including myself.
So I can’t join an org or stand in the driveway and talk to the neighbor.
I literally can’t do the grocery store. I can’t even do a zoom call more than once every week or two.
Can’t.
So I can’t join an org or stand in the driveway and talk to the neighbor.
I literally can’t do the grocery store. I can’t even do a zoom call more than once every week or two.
Can’t.
December 2, 2024 at 2:10 AM
There’s a boundary that my body has that is harddddddd for people to truly honor, including myself.
So I can’t join an org or stand in the driveway and talk to the neighbor.
I literally can’t do the grocery store. I can’t even do a zoom call more than once every week or two.
Can’t.
So I can’t join an org or stand in the driveway and talk to the neighbor.
I literally can’t do the grocery store. I can’t even do a zoom call more than once every week or two.
Can’t.
Reposted
I have countless examples of this and my almost-default reply is something to the effect of “anything and everything more than laying in my bed 22 hours/day is me choosing to do ‘too much’”.
December 2, 2024 at 2:06 AM
I have countless examples of this and my almost-default reply is something to the effect of “anything and everything more than laying in my bed 22 hours/day is me choosing to do ‘too much’”.
Reposted
It is very hard for people to hear me when I say 1000 different versions of “I can’t do that” about mundane things.
Everyone is always convinced there’s some hack or accommodation that will make things actually possible for me.
Everyone is always convinced there’s some hack or accommodation that will make things actually possible for me.
December 2, 2024 at 2:04 AM
It is very hard for people to hear me when I say 1000 different versions of “I can’t do that” about mundane things.
Everyone is always convinced there’s some hack or accommodation that will make things actually possible for me.
Everyone is always convinced there’s some hack or accommodation that will make things actually possible for me.
Reposted
Here’s an off the top of my head collection of phrases I’ve seen deployed in the context of community care and mutual aid that are inaccessible to the illness/disability i and millions others have:
“Show up!”
“Talk to your neighbors”
“Join an org!”
“Attend a meeting/event”
“Show up!”
“Talk to your neighbors”
“Join an org!”
“Attend a meeting/event”
December 2, 2024 at 1:59 AM
Here’s an off the top of my head collection of phrases I’ve seen deployed in the context of community care and mutual aid that are inaccessible to the illness/disability i and millions others have:
“Show up!”
“Talk to your neighbors”
“Join an org!”
“Attend a meeting/event”
“Show up!”
“Talk to your neighbors”
“Join an org!”
“Attend a meeting/event”
Reposted
Something about how the disability rights frame coalesced around capacitating disability (ie disabled people can do anything abled people can do with the right accommodation) means that it’s hard to get people to realize what you actually CAN’T do because of your illness/disability.
December 2, 2024 at 2:03 AM
Something about how the disability rights frame coalesced around capacitating disability (ie disabled people can do anything abled people can do with the right accommodation) means that it’s hard to get people to realize what you actually CAN’T do because of your illness/disability.
Reposted
❌ 62% of people are not confident their GP understands ME
❌ Lack of specialist ME healthcare provision forces many to go private
You can help us educate the next gen of doctors through our medical student essay competition!
Donate today 👇
tinyurl.com/afme-bgcc24
#pwME #MECFS #ChristmasChallenge
❌ Lack of specialist ME healthcare provision forces many to go private
You can help us educate the next gen of doctors through our medical student essay competition!
Donate today 👇
tinyurl.com/afme-bgcc24
#pwME #MECFS #ChristmasChallenge
December 7, 2024 at 9:54 AM
❌ 62% of people are not confident their GP understands ME
❌ Lack of specialist ME healthcare provision forces many to go private
You can help us educate the next gen of doctors through our medical student essay competition!
Donate today 👇
tinyurl.com/afme-bgcc24
#pwME #MECFS #ChristmasChallenge
❌ Lack of specialist ME healthcare provision forces many to go private
You can help us educate the next gen of doctors through our medical student essay competition!
Donate today 👇
tinyurl.com/afme-bgcc24
#pwME #MECFS #ChristmasChallenge
Very much this, folks ill perceive broadcast & shared documentation on social media (as we know it’s a way of building community and sharing understanding of the issues at hand) Instead they feel that because we’re sick we therefore can’t & shouldn’t have a voice.
"That there is more outrage directed towards the ill people finding ways to navigate this rotten system than the politicians who are responsible for it is the real sign of a sick society. There are people who should be shamed for their part in this mess – and it is not the ones on TikTok..."
Meet the “sickfluencers”: disabled people turn to TikTok for help accessing disability benefits - and the media says they’re scroungers gaming the system.
My col. on Fraser Nelson’s stitch up job, and the paranoia those with the least might get an advantage. www.theguardian.com/commentisfre...
My col. on Fraser Nelson’s stitch up job, and the paranoia those with the least might get an advantage. www.theguardian.com/commentisfre...
December 7, 2024 at 3:38 PM
Very much this, folks ill perceive broadcast & shared documentation on social media (as we know it’s a way of building community and sharing understanding of the issues at hand) Instead they feel that because we’re sick we therefore can’t & shouldn’t have a voice.
Reposted
This is such an important video on the unforgivable actions of powerful individuals against M.E. patients.
Now I clearly understand why we are where we are. I’m so hugely grateful to every single person over the years who has advocated for all of us, many to their own detriment.
#pwME #MECFS
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 22, 2024 at 6:50 PM
Reposted
BBC: 'Long Fatigue: The exhaustion that lingers after an infection'
'Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets'
'Putrino says it is vital..'
www.bbc.com/future/artic...
'Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets'
'Putrino says it is vital..'
www.bbc.com/future/artic...
Long Fatigue: The exhaustion that lingers after an infection
Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets.
www.bbc.com
November 20, 2024 at 2:32 PM
BBC: 'Long Fatigue: The exhaustion that lingers after an infection'
'Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets'
'Putrino says it is vital..'
www.bbc.com/future/artic...
'Before Long Covid there was post-viral fatigue – a mysterious set of illnesses caused by other infections. Now scientists are starting to unravel their secrets'
'Putrino says it is vital..'
www.bbc.com/future/artic...
Reposted
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME
November 19, 2024 at 4:26 PM
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME