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Beiträge, die mit Mecfs getaggt sind
Hi! Wir sind #neuhier. Der Fatigatio e.V. - Bundesverband ME/CFS unterstützt Menschen mit ME/CFS (Myalgische Enzephalomyelitis/Chronisches Fatigue Syndrom) und ihre Angehörigen. Seit 1993 setzt sich der Verband mit derzeit über 3.000 Mitgliedern für Versorgung, #Forschung und Aufklärung in Sachen #MECFS ein. In unseren deutschlandweiten Regionalgruppen fördern wir die #Selbsthilfe. Allein in Deutschland leiden ca. 600.000 Menschen an dieser schweren Multisystemerkrankung. https://www.fatigatio.de/
Bundesverband ME/CFS
Der Fatigatio e.V. ist eine deutsche Patientenorganisation für Menschen, die an Myalgischer Enzephalomyelitis / Chronisches Fatigue Syndrom erkrankt sind.Bundesverband ME/CFS
Now more than ever people have been conditioned to see disability as a moral failing. They believe people “deserve” their chronic illness or that they could “choose” to be better if they really wanted to.
This type of just world fallacy has always existed, because it enables people to move through life assuming nothing bad will ever happen to them as long as they’re “good people”.
It’s untrue, but as we’ve seen over the last five years most people have no problem swallowing lies if it helps them sleep better at night.
The reality is disability comes for almost everyone eventually. Unless you die suddenly and young, you will likely experience disability eventually.
You will have to face the fact that you are now one of the “others” that you looked down upon.
You will realize that no amount of “trying harder” can make you better. You will mourn your previous life.
It doesn’t have to be this way. We can stop blaming people for their illnesses and start helping them.
We can choose to wear a mask to protect our health and the health of others. We can clean the air. We can stay home when sick.
We can lobby governments for better COVID policy AND better social supports for disabled people.
We can demand accountability and transparency. It’s not too late.
https://www.donotpanic.news/p/the-arctic-plague-ship-that-disabled
#chronicillness #disability #ableism #longcovid #mecfs #spoonie #COVIDisAirborne #covidisnotover #sarscov2
This type of just world fallacy has always existed, because it enables people to move through life assuming nothing bad will ever happen to them as long as they’re “good people”.
It’s untrue, but as we’ve seen over the last five years most people have no problem swallowing lies if it helps them sleep better at night.
The reality is disability comes for almost everyone eventually. Unless you die suddenly and young, you will likely experience disability eventually.
You will have to face the fact that you are now one of the “others” that you looked down upon.
You will realize that no amount of “trying harder” can make you better. You will mourn your previous life.
It doesn’t have to be this way. We can stop blaming people for their illnesses and start helping them.
We can choose to wear a mask to protect our health and the health of others. We can clean the air. We can stay home when sick.
We can lobby governments for better COVID policy AND better social supports for disabled people.
We can demand accountability and transparency. It’s not too late.
https://www.donotpanic.news/p/the-arctic-plague-ship-that-disabled
#chronicillness #disability #ableism #longcovid #mecfs #spoonie #COVIDisAirborne #covidisnotover #sarscov2
The Arctic Plague Ship That Disabled A Best Selling Author
In August more than one hundred writers, musicians and artists converged on Longyearbyen, the world’s northernmost town, before setting sail around Svalbard, a group of islands in the Arctic circle.Nate Bear (¡Do Not Panic!)
🧵
We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"
https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/
"SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge"
#MEcfs #LongCovid @mecfs @longcovid
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We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"
https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/
"SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge"
#MEcfs #LongCovid @mecfs @longcovid
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We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride - The Sick Times
How can people with energy-limiting conditions march for our rights if we have negligible physical capability and exertion worsens our symptoms? My colleague Mlindeni Gabela and I are pioneering a new kind of protest in South Africa: SICK Pride.Sam Pearce (The Sick Times)
As an avid advocate of #Mastodon and the #Fediverse, and my partner needing extra comforts while bedbound with #MECFS, I felt this just had to be done - so here we are, with an addition to the household. (Okay, I might ease up on the photos now, but if you'd like more, I've just gone back to #Pixelfed too so you can follow me there: https://pix.zeroes.ca/MediaActivist ) #plushtodon #plushie #mushy
Jay Baker (@MediaActivist@pix.zeroes.ca)
1 Posts, 1 Following, 3 Followers · Muckraker. Filmmaker. Silencebreaker. https://www.mediaactivist.com/Pixelfed
Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe?
[OI = orthostatic intolerance]
https://www.mdpi.com/2218-273X/15/1/102
Image is from the Science for ME latest update
#MEcfs #CFS #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
[OI = orthostatic intolerance]
https://www.mdpi.com/2218-273X/15/1/102
Image is from the Science for ME latest update
#MEcfs #CFS #PwME
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Tetrahydrobiopterin in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Friend or Foe?
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a chronic multisystem disease characterized by severe muscle fatigue, pain, dizziness, and brain fog.MDPI
In case you missed it:
"Living with ME
Jeremy Jeffs is a filmmaker and photographer whose experience of living with ME/CFS inspired him to talk to and photograph others with the same illness.
Here nine people reveal the devastating difficulties the condition brings – including their struggles to be believed by medics, to get a diagnosis, to access support, and simply to keep going."
https://wellcomecollection.org/stories/living-with-me
@mecfs
#MEcfs #PwME #SevereME #Disability #Photography
"Living with ME
Jeremy Jeffs is a filmmaker and photographer whose experience of living with ME/CFS inspired him to talk to and photograph others with the same illness.
Here nine people reveal the devastating difficulties the condition brings – including their struggles to be believed by medics, to get a diagnosis, to access support, and simply to keep going."
https://wellcomecollection.org/stories/living-with-me
@mecfs
#MEcfs #PwME #SevereME #Disability #Photography
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.Wellcome Collection
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“Study Finds No Causal Link Between Depression And Chronic Fatigue Syndrome: Recent genetic analysis reveals major depressive disorder does not cause myalgic encephalomyelitis/chronic fatigue syndrome”
https://evrimagaci.org/tpg/study-finds-no-causal-link-between-depression-and-chronic-fatigue-syndrome-149447
#MEcfs #CFS
@mecfs
“Study Finds No Causal Link Between Depression And Chronic Fatigue Syndrome: Recent genetic analysis reveals major depressive disorder does not cause myalgic encephalomyelitis/chronic fatigue syndrome”
https://evrimagaci.org/tpg/study-finds-no-causal-link-between-depression-and-chronic-fatigue-syndrome-149447
#MEcfs #CFS
@mecfs
Study Finds No Causal Link Between Depression And Chronic Fatigue Syndrome
Major depressive disorder (MDD) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are two debilitating conditions often found overlapping, yet whether…The Pinnacle Gazette
Relationship between major depressive disorder & myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis
https://www.nature.com/articles/s41598-025-85217-6
"The results of the MR analysis revealed no causal relationship between MDD & ME/CFS"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
https://www.nature.com/articles/s41598-025-85217-6
"The results of the MR analysis revealed no causal relationship between MDD & ME/CFS"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis - Scientific Reports
Scientific Reports - Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysisNature
Dr David Tuller Talk on "Bad Science, Bad Medicine: How Flawed Biopsychosocial Studies on ME, Long Covid and Related Illnesses Harm Patients" (2024)
YouTube link:
https://www.youtube.com/watch?v=nskeLpbVMHg
It would be great if more people could subscribe to our channel
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
YouTube link:
https://www.youtube.com/watch?v=nskeLpbVMHg
It would be great if more people could subscribe to our channel
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
- YouTube
Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.www.youtube.com
I wish I could boost this a thousand times.
#Disability #Wheelchairs #DynamicDisability
#ChronicIllnesd #MEcfs
#Disability #Wheelchairs #DynamicDisability
#ChronicIllnesd #MEcfs
This is your periodic reminder that ambulatory wheelchair users exist. Many folks think wheelchairs are only for those who can't walk at all, or folks who can only take a couple steps.
Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.
#Disability #Wheelchairs #DynamicDisability #ChronicIllness #MEcfs
Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.
#Disability #Wheelchairs #DynamicDisability #ChronicIllness #MEcfs
Cochrane, by dropping their planned review of exercise for #MECFS, disrespects the energy and time of those involved in that review AND leaves the existing review supporting exercise for ME/CFS and #LongCovid.
Our petition calls for its withdrawal,
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Our petition calls for its withdrawal,
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
New from Canada/Ireland/UK/US:
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with
#LongCOVID...an international community-engaged qualitative research study
https://www.medrxiv.org/content/10.1101/2024.12.11.24318864v1
Also relevant to #MECFS
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with
#LongCOVID...an international community-engaged qualitative research study
https://www.medrxiv.org/content/10.1101/2024.12.11.24318864v1
Also relevant to #MECFS
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
“It’s a moving target”: Experiences of pacing to reduce symptom exacerbation among adults living with Long COVID – Results from an international community-engaged qualitative research study
Introduction Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms.medRxiv
📢 From #MEAction:
"Support Keeping Telehealth – Take Action Today!"
https://www.meaction.net/2024/12/11/support-telehealth-take-action-today/
"Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31"
Call your elected official to ask them to continue the expanded telehealth coverage
(sample call script provided)
Please boost!
@disability @mecfs @longcovid
#USPol #Medicare #Telehealth #Disability #MEcfs #LongCovid
"Support Keeping Telehealth – Take Action Today!"
https://www.meaction.net/2024/12/11/support-telehealth-take-action-today/
"Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31"
Call your elected official to ask them to continue the expanded telehealth coverage
(sample call script provided)
Please boost!
@disability @mecfs @longcovid
#USPol #Medicare #Telehealth #Disability #MEcfs #LongCovid
Support Keeping Telehealth - Take Action Today! - #MEAction Network
Call or write your representatives using our easy-to-follow script!#MEAction (#MEAction Network)
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia.
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
They’re common comorbids and can have a devastating impact on quality of life.
New allergies? Alcohol intolerance? Dizziness? Fatigue? Fainting? Hives? Neuropathy? GI issues? Unexplained tachycardia or blood pressure swings?
These can all be caused by POTS, MCAS or a combination of both.
Mega thread of resources and guides below:
I was dealing with both of these conditions before the pandemic - and when the first Long Covid cases started popping up I remember thinking “I need to make sure I avoid Covid - it’s already causing POTS and MCAS so it might make mine worse”
I shielded as soon as I was able (and haven’t been unable to stop).
I had hope that given the sheer size of the problem - we would see accelerated research and have better treatments and/or a cure.
Instead we’ve seen an increase in dismissal and psychologizing - with many people reporting it’s HARDER to get a diagnosis now than before the pandemic.
We don’t have anything new to offer patients despite the huge increase in people with these conditions - and the few doctors willing to treat us have wait lists which have tripled in size.
Patients have to wait longer to see a doctor - and get shockingly little time with them.
Basically - we are truly on our own.
As a result patient support groups and message boards are increasingly becoming a lifeline for those newly diagnosed.
I remember how scared and lost I was at the beginning of my chronic illness journey - so I’ve spent the last few months writing guides to help patients dealing with MCAS & POTS.
My hope is they will serve as a resource for the newly diagnosed as well as for people who suspect they may be dealing with these conditions.
You will find explanations of how they impact the body, tips for obtaining diagnosis, treatment options, lifestyle adjustments and more.
I hate having to go searching for something when I’m feeling really sick - so I thought it might be helpful to include everything I’ve written in one mega thread people could bookmark or save.
With that - the guides! (One per post below)
🧵
#longcovid #pots #mcas #dysautonomia #covidisairborne # covidisnotover #sarscov2 #wearamask #MECFS #chronicillness #spoonie #pandemic
If you’re looking for resources to assist someone new to Long Covid, ME/CFS, POTS or MCAS - I’ve been slowly building guides that I hope will assist patients, caregivers AND healthcare workers who are willing to read them.
I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.
People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.
If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!
Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!
https://zeroes.ca/@broadwaybabyto/113615351711064251
#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability
I’ve completed a three part series on MCAS and a separate three part series on POTS which I’ve compiled into a mega thread I will link below.
People have already provided great suggestions for a follow up series - including things like how to regulate temperature, how to handle dating and/or sex, how to discern which condition is driving which symptoms, how to talk to doctors in a way that will get them to understand, and how to cope with being a parent to a kiddo with these conditions.
If anyone has other suggestions - please reach out! I’m also working on a series about EDS which I hope will tie some of these topics together. As they say - when you can’t connect the issues think connective tissues!
Also - if you’re a parent to someone with any of these difficult to manage conditions and want to provide feedback, suggestions or contribute - please get in touch. I would love to connect!
https://zeroes.ca/@broadwaybabyto/113615351711064251
#longcovid #mecfs #pots #mcas #EDS #chronicillness #spoonie #covidisairborne #covidisnotover #disability
Broadwaybabyto (@broadwaybabyto@zeroes.ca)
If you’re dealing with Long Covid - there’s a chance you’re also dealing with MCAS and/or POTS/Dysautonomia. They’re common comorbids and can have a devastating impact on quality of life.zeroes.ca
Pillow Writers is the international ME/CFS writing group
https://pillowwriters.wordpress.com/
Image from the AMMES newsletter
#MEcfs #CFS #PwME @mecfs
https://pillowwriters.wordpress.com/
Image from the AMMES newsletter
#MEcfs #CFS #PwME @mecfs
You had me at the opening line:
"Are you horizontal right now?" 🛌
This. I keep trying to explain to people that sitting in a chair is not resting. The energy spent while sitting upright is less than that spent standing (which is why I use a seat in the shower). But sitting upright still burns way too much energy to be considered a form of rest.
Gravity sucks.
#PwME #POTS #Dysautonomia #MEcfs
"Are you horizontal right now?" 🛌
This. I keep trying to explain to people that sitting in a chair is not resting. The energy spent while sitting upright is less than that spent standing (which is why I use a seat in the shower). But sitting upright still burns way too much energy to be considered a form of rest.
Gravity sucks.
#PwME #POTS #Dysautonomia #MEcfs
My mega guide to living with POTS/Dysautonomia is here!
I cover everything I learned the hard way over years of living with this condition.
Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.
Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.
It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.
Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.
My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:
https://www.disabledginger.com/p/learning-to-live-horizontally-your
#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne
I cover everything I learned the hard way over years of living with this condition.
Salt, fluids, compression, medication, mobility aids and all the lifestyle adjustments you can imagine.
Patients can wait years for a diagnosis - being gaslit and dismissed along the way. When they DO get diagnosed - they’re often not given much in the way of support or coping tools.
It can be devastating when you’ve spent years suffering and then assume you’re finally going to get the help you need.
Doctors don’t understand the condition very well - and as a result we learn a LOT from other patients and painful trial and error.
My hope is this guide can serve as a soft place to land and find support, tips and ways to cope and stay safe:
https://www.disabledginger.com/p/learning-to-live-horizontally-your
#pots #dysautonomia #chronicillness #spoonie #longcovid #MECFS #mcas #disability #accommodation #accessibility #covidisnotover #covidisairborne
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.Broadwaybabyto (The Disabled Ginger)
🧵A last-minute photo of most of the raffle prizes (minus the decorative bowl & cinema tickets)
See here for all the raffle details
https://irishmecfs.org/blog/raffle-in-aid-of-the-irish-mecfs-association
We will post some photos of the individual prizes in the thread
#MEcfs #CFS #PwME @mecfs
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See here for all the raffle details
https://irishmecfs.org/blog/raffle-in-aid-of-the-irish-mecfs-association
We will post some photos of the individual prizes in the thread
#MEcfs #CFS #PwME @mecfs
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Press release:
Immune T cells become exhausted in chronic fatigue syndrome patients
https://www.eurekalert.org/news-releases/1066876
Longer piece from same university with more quotes:
https://news.cornell.edu/stories/2024/12/immune-t-cells-become-exhausted-chronic-fatigue-syndrome-patients
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
Immune T cells become exhausted in chronic fatigue syndrome patients
https://www.eurekalert.org/news-releases/1066876
Longer piece from same university with more quotes:
https://news.cornell.edu/stories/2024/12/immune-t-cells-become-exhausted-chronic-fatigue-syndrome-patients
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
Immune T cells become exhausted in chronic fatigue syndrome patients | Cornell Chronicle
The study found that key CD8+ T cells showed signs of constant stimulation that lead to an exhausted state, a condition that is well-studied in cancer.Cornell Chronicle
UK focused article on the biopsychosocial model of disability.
A lot of it focuses on ME/CFS, controversies but also tragedies such as people dying from the illness
https://www.scottishlegal.com/articles/david-j-black-economic-fallacies-and-public-health-realities
Includes mentions of Simon Wessely & #PACEgate
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @disability
@disabilityjustice
A lot of it focuses on ME/CFS, controversies but also tragedies such as people dying from the illness
https://www.scottishlegal.com/articles/david-j-black-economic-fallacies-and-public-health-realities
Includes mentions of Simon Wessely & #PACEgate
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome @disability
@disabilityjustice
David J Black: Economic fallacies and public health realities
In part two of his series on dysfunction in our health system, David J Black reminds us that the cost of bad medicine is people's lives. Read part one here.Scottish Legal News
Legal Advice for Chronic Illness Disability Claims
https://www.youtube.com/watch?v=hcfX2q6wCVA
Screenshot from MassME e-newsletter https://massmecfs.org/newsletters/909-2024-11-november-newsletter
#chronicillness #chroniclife #Spoonielife #Spoonie #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid @chronicillness
@spoonies
@disability
https://www.youtube.com/watch?v=hcfX2q6wCVA
Screenshot from MassME e-newsletter https://massmecfs.org/newsletters/909-2024-11-november-newsletter
#chronicillness #chroniclife #Spoonielife #Spoonie #MEcfs #CFS #PwME #LongCovid @mecfs @longcovid @chronicillness
@spoonies
@disability
From The Sick Times:
“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump
https://thesicktimes.org/2024/11/26/dont-give-up-hope-long-covid-advocates-and-researchers-say-crucial-work-will-continue-under-trump/
@mecfs @longcovid
#LongCovid #MEcfs #Research #USPol
“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump
https://thesicktimes.org/2024/11/26/dont-give-up-hope-long-covid-advocates-and-researchers-say-crucial-work-will-continue-under-trump/
@mecfs @longcovid
#LongCovid #MEcfs #Research #USPol
“Don’t give up hope”: Long COVID advocates and researchers say crucial work will continue under Trump - The Sick Times
As incoming President Donald Trump has announced a growing list of top nominees who’ve denied science and public health, people with Long COVID are preparing for an administration likely to be less friendly for research and advocacy.Betsy Ladyzhets (The Sick Times)
This week’s article was a tough one - mainly because I’ve been in a horrific and unrelenting flare that’s prohibited me from writing about what I wanted to tackle.
I’ve had to put multiple pieces on the back burner because my brain fog and other symptoms were too severe.
My inner monologue turned very cruel - constantly berating and gaslighting myself for being unable to get the articles done.
It’s hardly a surprise - because we aren’t taught to rest. We’re taught to push. To hide our pain. To say we’re “fine” and smile no matter how much we’re suffering.
We’re taught that worth is tied to economic contribution. That we’re cogs in the wheel of capitalism and that if we aren’t contributing we have no value.
As a result we play through the pain. We ignore what our bodies need because we don’t know how to truly rest.
We are overwhelmed with the “coulda woulda shouldas”… three of the most damaging words to someone living with chronic illness.
When you’re disabled - you can’t push as hard as other people can. You need to learn radical rest.
My own war with the ‘coulda, woulda, shouldas’ looks a lot like this:
😞 You coulda had a better day today if you had just been smarter yesterday
😞 You woulda been more productive if you had just done this differently
😞 You shoulda seen this coming. You’re stupid. Why didn’t you prepare better?
😞 You coulda stopped this if you only tried harder
😞You woulda had your article published if you focused more
You SHOULDA known better. When will you learn?
My article is about how to recognize the warning signs of an impending crash, learn radical rest and most importantly - throw the “coulda woulda shouldas” away once and for all.
https://www.disabledginger.com/p/its-time-to-throw-away-the-coulda
#chronicillness #disability #disabilityrights #spoonie #pem #brainfog #radicalrest #pots #mcas #Dysautonomia
#mecfs #longcovid #rest #gaslighting
I’ve had to put multiple pieces on the back burner because my brain fog and other symptoms were too severe.
My inner monologue turned very cruel - constantly berating and gaslighting myself for being unable to get the articles done.
It’s hardly a surprise - because we aren’t taught to rest. We’re taught to push. To hide our pain. To say we’re “fine” and smile no matter how much we’re suffering.
We’re taught that worth is tied to economic contribution. That we’re cogs in the wheel of capitalism and that if we aren’t contributing we have no value.
As a result we play through the pain. We ignore what our bodies need because we don’t know how to truly rest.
We are overwhelmed with the “coulda woulda shouldas”… three of the most damaging words to someone living with chronic illness.
When you’re disabled - you can’t push as hard as other people can. You need to learn radical rest.
My own war with the ‘coulda, woulda, shouldas’ looks a lot like this:
😞 You coulda had a better day today if you had just been smarter yesterday
😞 You woulda been more productive if you had just done this differently
😞 You shoulda seen this coming. You’re stupid. Why didn’t you prepare better?
😞 You coulda stopped this if you only tried harder
😞You woulda had your article published if you focused more
You SHOULDA known better. When will you learn?
My article is about how to recognize the warning signs of an impending crash, learn radical rest and most importantly - throw the “coulda woulda shouldas” away once and for all.
https://www.disabledginger.com/p/its-time-to-throw-away-the-coulda
#chronicillness #disability #disabilityrights #spoonie #pem #brainfog #radicalrest #pots #mcas #Dysautonomia
#mecfs #longcovid #rest #gaslighting
It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical Rest
When you're chronically ill you can't push your body the way non disabled people do. You have to learn to rest. There's few words more damaging to us than the 'coulda, woulda, shouldas'Broadwaybabyto (The Disabled Ginger)
Sweden:
"Despite broad criticism, the National Board of Health and Welfare will not update its knowledge support on post-infectious conditions."
Google English translation:
https://fof-se.translate.goog/artikel/socialstyrelsen-underkanner-whos-kunskapsunderlag-om-postcovid/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
Screenshot from Science for ME update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS
"Despite broad criticism, the National Board of Health and Welfare will not update its knowledge support on post-infectious conditions."
Google English translation:
https://fof-se.translate.goog/artikel/socialstyrelsen-underkanner-whos-kunskapsunderlag-om-postcovid/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
Screenshot from Science for ME update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS
Socialstyrelsen underkänner WHO:s kunskapsunderlag om postcovid
Socialstyrelsens kunskapsstöd om postinfektiösa tillstånd presenterades i augusti i år och fick då skarp kritik från läkare, forskare och patientföreningar – vilka ansåg att det …jonas.mattsson@fof.se (Forskning & Framsteg)
The Institute for Neuro-Immune Medicine has posted a video (42 minutes): "Neurovascular Dysregulation During Exercise in ME/CFS and Long COVID."
In it Dr David Systrom talks about new research on neurovascular issues in #MECFS & #LongCOVID
https://www.youtube.com/watch?v=TD-eSXKvfq
#PEM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
In it Dr David Systrom talks about new research on neurovascular issues in #MECFS & #LongCOVID
https://www.youtube.com/watch?v=TD-eSXKvfq
#PEM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #PASC #postcovid
- YouTube
Auf YouTube findest du die angesagtesten Videos und Tracks. Außerdem kannst du eigene Inhalte hochladen und mit Freunden oder gleich der ganzen Welt teilen.www.youtube.com
Our government (in Australia) pretty much put out the message that vaccination meant 'cure'. Masks came off, and Covid ran freely through the population.
We also have a medical 'fraternity' that continually ignores the signs of endometriosis...no doubt b/c it 'only affects women'.
#MECFS? Hypochondriacal Women. Female GPs have been conditioned to ignore women's problems, too.
Yes, we distrust doctors. It's a lucky dip looking for a GP who is dedicated to their patients' health.
We also have a medical 'fraternity' that continually ignores the signs of endometriosis...no doubt b/c it 'only affects women'.
#MECFS? Hypochondriacal Women. Female GPs have been conditioned to ignore women's problems, too.
Yes, we distrust doctors. It's a lucky dip looking for a GP who is dedicated to their patients' health.
🧵
Thanks very much to David for his kind words on me in this. I have largely retired from writing papers, letters & e-letters and am very grateful to him for his ongoing work which takes a lot of ongoing commitment, plus dealing with many frustrating scenarios.
https://virology.ws/2024/11/13/trial-by-error-my-tour-of-ireland-through-wind-and-rain-slides-of-my-talk/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC
1/
Thanks very much to David for his kind words on me in this. I have largely retired from writing papers, letters & e-letters and am very grateful to him for his ongoing work which takes a lot of ongoing commitment, plus dealing with many frustrating scenarios.
https://virology.ws/2024/11/13/trial-by-error-my-tour-of-ireland-through-wind-and-rain-slides-of-my-talk/
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC
1/
Trial By Error: My Tour of Ireland, Through Wind and Rain; Slides of My Talk | Virology Blog
By David Tuller, DrPH Last month, I took a quick speaking tour around Ireland at the invitation of the Irish ME/CFS Association. I first became acquainted w ...David Tuller (Virology Blog)
“If you’ve been fighting for Covid mitigations for the last five years - you more than likely saw this coming. It was painfully obvious when the great unmasking occurred that many people on BOTH sides of the aisle didn’t care about the “vulnerable”. Didn’t care about community or protecting their neighbours. Didn’t care about anything other than their own ability to go to brunch, travel, socialize and get ‘back to normal.’
I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”
If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #fascism #election2024
I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”
If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.
https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #fascism #election2024
How Did We Get Here and What Comes Next?
Disabled people have been warning others for nearly 5 years that eugenicist Covid policies would lead to a rise of fascist, racist, bigoted, misogynistic hatred. It's here now. So what’s next?Broadwaybabyto (The Disabled Ginger)
People spend their lives running from suffering. Doing whatever they can to avoid feeling pain. The idea of “forever suffering” is terrifying to them. I think this fear is behind a lot of the disdain we see directed at disabled people.
We remind others that suffering can be permanent. That it can’t always be outrun.
We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”
This reality scares the crap out of people.
As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.
When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.
People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.
They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.
https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans
We remind others that suffering can be permanent. That it can’t always be outrun.
We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?”
This reality scares the crap out of people.
As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable.
When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth. In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.
People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.
They will push our boundaries, gaslight us and yes - put us at risk for covid. So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself. If someone won’t be there at your worst - they don’t deserve you.
https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans
Family Abandonment During Covid Pandemic. They 'Don't Do Sick'.
A look at relationship dynamics, ableism and the importance of setting (and sticking) to personal boundariesBroadwaybabyto (The Disabled Ginger)
People are angry that hospitals are bringing back mask mandates due to COVID outbreaks.
Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.
Masks make sense in hospitals - why oppose them?
I’ve yet to hear a decent argument against mask mandates in hospitals.
The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?
Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.
If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.
Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?
The responsibility to stay covid safe shouldn’t be left to the patient.
It’s cruel and unusual punishment.
Mandatory masks mean that patients are protected by those around them - which is how it should be.
No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.
If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.
Vulnerable patients feel unsafe. Expendable. Terrified.
Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:
https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhe
Patients like me are angry that we have to risk infection to get medical care. Some of us have died due to hospital acquired COVID.
Masks make sense in hospitals - why oppose them?
I’ve yet to hear a decent argument against mask mandates in hospitals.
The people who oppose them are almost always the ones screaming about how strong and healthy their immune systems are - so theoretically they never spend any time IN a hospital. Why do they care?
Inevitably people just trot out the tired “if your mask works then no one else needs one”… which just highlights that they’ve never spent any significant time in the hospital.
If you’re sick enough to need the hospital there’s decent odds something might prevent you from masking.
Even if you CAN mask - if you’re admitted what do you do when you need to eat, drink or brush your teeth? What if you require oxygen, having vomiting or airway complications?
The responsibility to stay covid safe shouldn’t be left to the patient.
It’s cruel and unusual punishment.
Mandatory masks mean that patients are protected by those around them - which is how it should be.
No one should have to risk covid to get care - and the normalization of hospital acquired covid needs to stop.
If you’re someone who opposes masks in healthcare - or who doesn’t understand WHY they’re necessary - please read my plea to healthcare workers.
Vulnerable patients feel unsafe. Expendable. Terrified.
Needing the hospital is scary enough - we shouldn’t have to worry about forced infection too:
https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers
#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhe
A Plea to Maskless Healthcare Workers from Vulnerable Patients
If you see a mask - wear a mask. Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.Broadwaybabyto (The Disabled Ginger)
Happy #WritingMonth y'all!
Here's the start of the month status of my book. I've been working since May. As expected, I'm in a #MECFS Post-Exertional Crash due to celebrating Halloween/Segaki/Samhain, & am not able to write today.
However! I set my 21000 words goal based on the idea of 1,000 words x 21 days, and added it to my existing word count. I hope 21/30 days is frequent enough to build a habit, yet flexible enough to honor my chronic illnesses.
Data, for the data gods!:
Here's the start of the month status of my book. I've been working since May. As expected, I'm in a #MECFS Post-Exertional Crash due to celebrating Halloween/Segaki/Samhain, & am not able to write today.
However! I set my 21000 words goal based on the idea of 1,000 words x 21 days, and added it to my existing word count. I hope 21/30 days is frequent enough to build a habit, yet flexible enough to honor my chronic illnesses.
Data, for the data gods!:
This is the longest I’ve had a #sewing project on the go: 30 days so far! @sewing
I’m still recovering, albeit very slowly, after our landlord shut off the A/C for 14 days and sent me to the hospital. It’s been a long, tiresome month. #MECFS #SEID
I’ve gotten as far as putting binding on the t-shirt collar seam. Trying to sew while sick like this made me miss the binding right near the end, but thankfully chainstitches pull out easily. The second pass was much better! Sleeves next, eventually…
I’m still recovering, albeit very slowly, after our landlord shut off the A/C for 14 days and sent me to the hospital. It’s been a long, tiresome month. #MECFS #SEID
I’ve gotten as far as putting binding on the t-shirt collar seam. Trying to sew while sick like this made me miss the binding right near the end, but thankfully chainstitches pull out easily. The second pass was much better! Sleeves next, eventually…
From ME Research UK:
"Estimating ME/CFS prevalence in individuals with long COVID"
During the early phases of the COVID-19 pandemic, as the term ‘long COVID’ first emerged, Dr Anthony Komaroff raised a crucial question in an article:
"Will some people who get COVID-19 subsequently develop ME/CFS? … many people with ME/CFS say that their illness began with some kind of infection: a virus, a flu, a bad cold."
@longcovid @mecfs
#LongCovid #MEcfs #PostCovid #PASC #LongHaulers
"Estimating ME/CFS prevalence in individuals with long COVID"
During the early phases of the COVID-19 pandemic, as the term ‘long COVID’ first emerged, Dr Anthony Komaroff raised a crucial question in an article:
"Will some people who get COVID-19 subsequently develop ME/CFS? … many people with ME/CFS say that their illness began with some kind of infection: a virus, a flu, a bad cold."
@longcovid @mecfs
#LongCovid #MEcfs #PostCovid #PASC #LongHaulers
