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Beiträge, die mit Mecfs getaggt sind
Daily Drop about Long Covid ME/CFS updates: https://turnto.ai/download
#Covid
#LongCovid
#MECFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
https://www.gofundme.com/f/9apnu9-medical-treatment
"In March of 2020 I was attacked on my way home from work.
The man grabbed me, shook me, coughed in my face & laughed ‘You’re sick now’
I thought it was a cruel joke. I was wrong.
I had contracted Covid & I never recovered.
I have been diagnosed with ME/CFS, POTS & MCAS.
I am mostly bed bound & barely able to manage the most basic of tasks.
I have no financial support from from family or government & no supplemental insurance.
I have been unable to work since, after over 2 years my savings have been wiped out & my hope of a spontaneous recovery has dwindled.
I’ve lost my business & my autonomy."
#Covid #LongCovid #MutualAid #Disability #MECFS #POTS #MCAS #CFS
Donate to Medical Costs & Housing, organized by Tracey Thompson
In March of 2020 I was attacked on my way home from work. The man grabbed me, shook me, cough… Tracey Thompson needs your support for Medical Costs & Housinggofundme.com
https://www.change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm
"I have set up this petition on behalf of Millie, who is 18 years old and has very Severe Myalgic Encephalomyelitis (ME/CFS). She is currently in The Royal Lancaster Infirmary part of the University Hospitals of Morecambe Bay NHS Foundation Trust. Some staff at the hospital have stated that they don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness."
#ME #MyalgicEncephalomyelitis #ME/CFS #MECFS
Meine Gedanken sind bei seiner Frau, seiner Familie und bei allen, denen Faraz eine Stimme gab.
Ich habe in solchen Momenten eine shyce Angst, dass es sich auch bei mir verschlechtern könnte, obwohl es bei mir bei weitem nicht so schlimm ausgeprägt ist.
Wir lassen die Betroffenen und ihre Angehörigen brutalst allein.
Ruhe in Frieden Faraz.
#mecfs
https://www.spiegel.de/gesundheit/me-cfs-wie-faraz-fallahi-auf-twitter-um-hilfe-bat-und-rettung-fand-a-235fee2e-3e03-4834-9fa0-9168392a32bb
ME/CFS: Er hatte sich aufs Sterben eingestellt – dann meldete sich eine Ärztin
Jahrelang vegetiert er unter Schmerzen in einem dunklen Raum, mit der Krankheit ME/CFS findet Faraz Fallahi keinen Arzt. Er rechnet mit dem Tod – als plötzlich Hoffnung naht. Die einzigartige Geschichte eines Heilversuchs.Nina Weber (DER SPIEGEL)
Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Jones and Younger
https://www.mdpi.com/1660-4601/22/2/280
Image is from latest Science for ME weekly update
#MEcfs #CFS @mecfs
Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Myalgic encephalomyelitis (ME/CFS) a chronic, disabling illness with no established etiopathology. It has been indicated in some population-based studies that Black and ethnic minority populations are underdiagnosed with ME/CFS.MDPI
https://www.mdpi.com/1660-4601/22/2/280
"White respondents had 2.94 greater odds of being diagnosed with ME/CFS than non-White respondents"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Recherche-Kollektiv Postviral: Alles zu Long Covid & ME/CFS
RiffReporter-Recherchen über Long Covid, ME/CFS, Post Vac: Wichtige Studien, die Versorgungslage der Betroffenen und aktuelle politischen Entwicklungen.RiffReporter
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