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Beiträge, die mit MeCfs getaggt sind
It’s ableism and eugenics. Its scared people who can’t face the fact that they could lose their health at any moment.
It’s people who desperately need to cling to control.
First of all I’m not at all opposed to a healthy lifestyle.
I was an avid hiker and yogi who followed a whole foods diet, did regular meditation and followed a lot of wellness influencers.
I still became chronically ill.
When the “wellness” activities didn’t cure me, that community abandoned me.
They looked at me as a failure. They believed I wasn’t “wellness-ing hard enough”.
If it were them, they would be getting better.
The root cause of this is ableism. Disability terrifies people.
The idea that there are conditions which won’t necessarily kill you but will rob you of your quality of life? Its scary.
Knowing there’s no treatments or cure? Terrifying.
But it’s not fair to blame the ones who are suffering. To scrutinize their past behaviour for signs that they brought it on themselves.
To hammer them with unsolicited advice and “tips” for things they could do if they really wanted to get better.
No one asks to be chronically ill. It just happens.
And everyone is one virus, infection, accident or stroke of bad luck away from it happening to them.
The odds that they will be the “exception” are incredibly low.
Let’s not forget that “wellness” costs money. A healthy lifestyle doesn’t come cheap
Disability is expensive. Nothing can prepare you for how devastating it is to spend every cent trying to stay ahead of your dwindling health, only to be told you’re not doing enough
Most of us can’t afford the lifestyle that wellness folks peddle. It’s big business. They’re not helping for altruistic reasons, they’re lining their pockets.
They don’t even care if their recommendations are harmful (and they definitely don’t care if they aren’t helpful)
Please, don’t blame someone for their disabilities. Don’t comb through their past looking for points of “weakness” that can absolve you of facing your own fear of chronic illness
No one is perfect. We’ve all done things that aren’t “healthy”. No one deserves chronic illness
If someone in your life is blaming you, know that you can set firm boundaries to protect yourself.
You don’t have to put up with that kind of gaslighting behaviour
I know it hurts, I’ve been there many many times. But you have the right to walk away
Remind yourself it’s not about you. It’s their fear of the unknown. Their fear of disability. Their own internalized ableism.
One day when they lose their health they will be forced to confront their false beliefs, and there will be a reckoning.
Until that day comes the best we can do is protect ourselves from the toxicity of people who can’t face the reality of our conditions.
We can fight for one another. We can support one another. We can be loud, visible and unashamed.
#disability #chronicillness #longcovid #mecfs #spoonie #ableism #wellness #Maha #eugenics #fascism #disabilityrights
So ließe sich das Leben mit #MECFS beschreiben – einer Krankheit, die viel zu oft als „Müdigkeit“ abgetan wird. Dabei betrifft sie weltweit über 40 Millionen Menschen, darunter auch Kinder. Eine Krankheit, die Aufmerksamkeit, Forschung und eine besseren Gesundheitsversorgung braucht.
Betroffene haben deshalb mit der #LemonChallengeMECFS 🍋 eine Initiative ins Leben gerufen, die ins Bewusstsein rufen soll, was sonst oft gar nicht sichtbar ist. Dabei unterstütze ich gern. Denn solche Aktionen erinnern uns daran: Es geht nicht nur um Zahlen oder Diagnosen. Es geht um Menschen.
(geteilt vom offiziellen Account)
#Habeck #RobertHabeck
Arte-Doku über die Krankheit ME/CFS: Ein Film, der sein Publikum zum Weinen bringen soll
Zwei Filmemacherinnen haben eine erschütternde Dokumentation über das Leben und Sterben mit ME/CFS gedreht. Eine von ihnen leidet selbst schwer an der Erkrankung und konnte nur von ihrer Berliner Wohnung aus an dem Projekt arbeiten.Martin Rücker (RiffReporter)
https://research.manchester.ac.uk/en/studentTheses/what-is-the-psychological-and-educational-impact-of-being-an-emer
Screenshot from latest Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Good Practice Guidelines for Psychologists Working with People with ME/CFS November 2024 Update
https://meassociation.org.uk/wp-content/uploads/2024/11/BPS-MECFS-Guidelines-Update-11.11.24.pdf
Although this isn't brand new, I found it interesting so I'm going to post some extracts to this thread.
#MEcfs #CFS #PwME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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Particularly relevant when similarities with the #LongCovid presentation in some people are being missed
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
"My husband and I have both had ME for decades, then our son got Long COVID"
https://thesicktimes.org/2025/02/06/my-husband-and-i-have-both-had-me-for-decades-then-our-son-got-long-covid/?utm_source=rss&utm_medium=rss&utm_campaign=my-husband-and-i-have-both-had-me-for-decades-then-our-son-got-long-covid
"I think we were able to pass on this important lesson of being chronically ill: that to have and achieve a goal each day, however small or insignificant it might appear to others, is how you get through this."
@mecfs @longcovid
#COVID19 #LongCovid #MEcfs #CovidIsNotOver
My husband and I have both had ME for decades, then our son got Long COVID - The Sick Times
When our seventeen-year-old son Nick developed Long COVID after suffering a pulmonary haemorrhage in 2022, like any parents, we were devastated. But for us it hit harder.Linda Fuchs (The Sick Times)
https://investinme.org/iimer-newslet-cofefore24.shtml
@invest_in_me_research @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Invest in ME Research - Centre of Excellence for ME Norwich Research Park
Invest in ME Research ICentre of Excellence for ME Norwich Research Parkinvestinme.org
Free:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11537498/
Image is from free AMMES February 2025 e-newsletter
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#LongCovid
#PASC
#MECFS
#Vaccination
#AllCoronavirusesAreBastards
#politics
#press
https://allcoronavirusesarebastards.digitalpress.blog/uber-die-haufigkeit-von-me-cfs-2/
Das "eigentliche" Long Covid und seine Häufigkeit
Eine große Studie untersuchte die Häufigkeit von ME/CFS und ME/CFS-ähnlichem Long Covid.Wolfgang Hagen (All Coronaviruses Are Bastards)
#MECFS #ChronicIllness
Empfehlung Arztpraxis gesucht!
Raum #Bonn und #koln
Bekannte von Bekannten suchen auf allen möglichen Ebenen nach Hinweisen auf Hausärzte, die nicht nur wissen dass es #LC und Mecfs gibt, sondern auch Ahnung und Erfahrung damit haben, diese zu behandeln.
MeCfs bestand wohl schon vorher, Covid hat es verschlimmert, sie finden bisher niemand der Ahnung hat und Kapazitäten frei.
Danke für Tipps!
Wir können auch versuchen, den Kontakt zu den Fragenden herzustellen.
@FatigatioeV@mastodon.social
Das ist ne gute Sache. Informiert Betroffene und Angehörige!
#Selbsthilfe ME/ CFS #chronicFatique #FollowerPower
Provocation of brachial plexus and systemic symptoms during the elevated arm stress test in individuals with myalgic encephalomyelitis/chronic fatigue syndrome or idiopathic chronic fatigue
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06137-7
Image from latest Science for ME update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Provocation of brachial plexus and systemic symptoms during the elevated arm stress test in individuals with myalgic encephalomyelitis/chronic fatigue syndrome or idiopathic chronic fatigue - Journal of Translational Medicine
Background We have noted that some adolescents and young adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) report difficulty with arms-overhead activities, suggestive of brachial plexus dysfunction or thoracic outlet syndrome (T…BioMed Central
I’ve written a series of guides about two of the most common and difficult to diagnose comorbids: POTS and MCAS.
If you’re newly diagnosed or undiagnosed, if you’ve been told it’s “all in your head”… read on! 🧵
#LongCOVID #covidisairborne #covidisnotover #chronicillness #spoonie #pots #mcas #mecfs #Dysautonomia #eds #disability #ableism
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 - 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)
Jay Baker (@MediaActivist@pix.zeroes.ca)
1 Posts, 1 Following, 3 Followers · Muckraker. Filmmaker. Silencebreaker. https://www.mediaactivist.com/Pixelfed
[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
"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
“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
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
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
#Disability #Wheelchairs #DynamicDisability
#ChronicIllnesd #MEcfs
Wheelchairs and electric scooters are used due to pain, weakness, balance issues, orthostatic intolerance, etc.
#Disability #Wheelchairs #DynamicDisability #ChronicIllness #MEcfs
Our petition calls for its withdrawal,
https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
“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
"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)
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
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
https://pillowwriters.wordpress.com/
Image from the AMMES newsletter
#MEcfs #CFS #PwME @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
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)
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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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