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Beiträge, die mit MeCfs getaggt sind

A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid

Info in German:
https://sozialhummel.de/wohnprojekt-fuer-schwer-me-cfs-betroffene-in-neunkirchen-seelscheid-interessenten-gesucht/

Some info & discussion in English
https://www.s4me.info/threads/housing-project-for-severely-me-cfs-sufferers-in-neunkirchen-seelscheid-germany-interested-parties-wanted.43639/

Image from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME @mecfs_de
Germany A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid . A developer, in collaboration with Sozialhummel, plans to build barrier-free apartments that are optimally tailored to the needs of people with severe ME/CFS. Interested parties can join a waiting list.

Housing project for severely ME/CFS sufferers in Neunkirchen-Seelscheid, Germany: Interested parties wanted!

A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid . A developer,...
Science for ME
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #SevereME @MECFS group @mecfs_de group

New US research:

Identifying commonalities & differences between EHR representations of #PASC & ME/CFS in the RECOVER EHR cohort

https://www.nature.com/articles/s43856-025-00827-5

"These findings suggest symptom management approaches to these illnesses could overlap"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2
Screenshot of title, author list, abstract & plain language summary

Identifying commonalities and differences between EHR representations of PASC and ME/CFS in the RECOVER EHR cohort - Communications Medicine

Powers et al. investigate commonalities and differences between electronic health record patterns associated with post-acute sequelae of SARS-CoV-2 infection and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Nature
#COVID19 #cfs #COVID #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #sarscov2 #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #covidbrain #Coronavirus #COVID_19 #covidー19 #neuropasc @MECFS group @longcovid group @covid19 group

ich zweifle sehr den Inhalt dieser Meldung und die Aussagen des Virologen an. Kinder sind, durch Long/Post-COVID, eine Risikogruppe!
Die Folgeerkrankungen nach einer Infektion (oder multipler) sind durch mannigfaltige Studien gezeigt worden - auch bei Kindern.

Ich verweise hiermit auf die geehrten Kolleg:innen:
https://g-f-v.org/fuenf-jahre-covid-19-anmerkungen-der-gesellschaft-fuer-virologie-zur-aufarbeitung-der-covid-19-pandemie-in-deutschland/

#CovidIsNotOver #mecfs #PostCovid #LongCovid @ProtectTheKids
#LongCovid #mecfs #PostCovid #CovidIsNotOver @ProtectTheKids

Recording of a general introduction about ME and medical research into ME in English by Professor Ola D. Saugstad

He is a Norwegian pediatrician, neonatologist and neuroscientist

https://youtu.be/Cy_NwD32aTA

Image is from latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Iceland Professor Ola D. Saugstad has given a talk in Iceland. First he gives a general introduction about ME and medical research into the illness. In the second half he talks about oxygenation of newborn babies. The talk is in English (apart from a few minutes of introduction in Icelandic) and has been uploaded on YouTube by the Icelandic ME Association ME félag Íslands.

- 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.
youtu.be
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

#COVID

Danke @wirsindverdi!

Endlich nimmt sich eine Gewerkschaft des Themas #COVID19 und seiner Folgen #LongCOVID, #PostCOVID, #MECFS an.

Übrigens: #CovidIsNotOver. Für niemanden.

https://gesundheit-soziales-bildung.verdi.de/service/mittendrin/mittendrin-nr-11/++co++19d8b622-0985-11f0-9f1a-332caa146d61

Es ist nicht vorbei

Hunderttausende leiden unter Spätfolgen einer Corona-Infektion, darunter besonders viele Beschäftigte aus dem Gesundheits-, Erziehungs- und Sozialwesen.
gesundheit-soziales-bildung.verdi.de
#COVID19 #COVID #LongCovid #mecfs #PostCovid #CovidIsNotOver @wirsindverdi

2/
Table 5. Results of objective outcomes in CBT and GET studies

Comment: strictly speaking in the PACE trial, there was a small increase in the 6MWT in the GET arm but not on the other objective measures and none for CBT

#MEcfs #CFS @mecfs
Table 5. Results of objective outcomes in CBT and GET studies
#cfs #mecfs @MECFS group

Congratulations to the heroic Mark Vink for managing to publish another paper while bedbound with severe ME 👏🏆

"The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS"

https://www.mdpi.com/2075-1729/15/4/584

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

"New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases" by @david

https://virology.ws/2025/03/31/trial-by-error-new-study-documents-iatrogenic-harm-from-perceived-psychosomatic-and-psychiatric-misdiagnoses-of-rheumatic-diseases

Image is from latest Science for ME weekly update

#chronicillness #invisibleillness
@chronicillness
@spoonies
@mecfs
#MEcfs
New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases A walkthrough of the paper "'I still can't forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses" - Sloan et al. 80% of those who had received a psychosomatic misdiagnoses reported that it had damaged their self worth. Tuller comments that the iatrogenic harm of the MUS approach is incalculable.

Trial By Error: New Study Documents Iatrogenic Harm from Perceived Psychosomatic and Psychiatric Misdiagnoses of Rheumatic Diseases | Virology Blog

By David Tuller, DrPH In 2020, I wrote a post about a paper, published by the journal Rheumatology Advances in Practice, called “Medically explained symptom ...
David Tuller (Virology Blog)
#mecfs #chronicillness #InvisibleIllness @MECFS group @spoonies group @ChronicIllness group @David Tuller

An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases https://thesicktimes.org/2025/04/04/an-international-emergency-task-force-is-urgently-needed-for-severe-long-covid-and-me-crisis-cases/ #ME #MECFS #LongCovid #Covid #Covid19 #CovidIsNotOver

An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases - The Sick Times

Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up.
Sam Pearce (The Sick Times)
#COVID19 #COVID #LongCovid #mecfs #CovidIsNotOver #me

Zum #Fotovorschlag 'Kreative Ideen' habe ich aus meinem alten Leben vor #PostCOVID und #mecfs vieles im Archiv.
Habe mich jetzt spontan für einen meiner Vitaminschnitzer entschieden.

#Fisch #vitamine #essen #food #vegetarian #essenfürkinder #obst #Erdbeeren#vegetarisch #vegan
Ein Fisch gelegt aus Erdbeeren- und Apfelscheiben. Der Körper ist aus Erdbeeren, die Flossen aus Apfel gemacht. Luftblasen aus halben dunklen Weintrauben. Unten drunter Seegras aus Gurkenschale auf Gurkenscheiben und Pistazien.
#food #mecfs #vegan #PostCovid #FotoVorschlag #vegetarian #essen #obst #essenfurkinder #fisch #vitamine

4/
Volunteer in Norwegian ME Association:
“There are days or weeks when I can't do anything. Few employers will hire someone who disappears for an extended period of time due to illness. It makes it difficult to return to work, especially if you don't get better.”

#MEcfs #PwME
@mecfs
#mecfs #pwme @MECFS group

3/

“Many patient stories show that those who try to adapt to the labor market often experience relapse. Working life is largely not adapted for people with low and varying work capacity, says Trude Schei, assistant secretary general of the ME Association.”

#PwME #MEcfs
@mecfs
#mecfs #pwme @MECFS group

2/

“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.”

#MEcfs #PwME #CFS
@mecfs
#cfs #mecfs #pwme @MECFS group

🧵
"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."

https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/
Almost no ME/CFS patients return to work "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher. The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB) Emilie Wee Journalist Published 21 March 2025 - 00:01

Study reveals that ME/CFS patients struggle to return to work

'The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect,' says a researcher.
Emilie Wee (ScienceNorway)
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

Science for ME: News in Brief
24 - 30 Mar 2025

This week's research articles, media items, advocacy and other news relating to #MECFS and #LongCovid
@mecfs

https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-597543

News in Brief - March 2025

This thread has a Science for ME 'News in Brief' post for each week in March 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
Science for ME
#LongCovid #mecfs @MECFS group

My significant other was diagnosed with breast cancer today.

It’s small. Hopefully the treatment will be easy and successful.

She’s my caregiver and the caregiver to her 88 year old mom. How is this possibly going to work? I feel so scared and helpless. If I didn’t have #MECFS, I could do all the things to help her. Right now I’m in a severe crash and can barely take care of myself. I’m so overwhelmed.

I have to believe she’s going to be ok. I have to.
#mecfs

Recording with:

- Dr David Joffe: an overview of biological basis of Long COVID

- Dr David Tuller: on basis of psycho-behavioural therapy focusing on the PACE trial & a major #LongCOVID trial"

https://youtu.be/V9f_kjlz6Ho

From latest Science for ME update

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#SARSCoV2 #CovidIsNotOver
@auscovid19 #auscovid19
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Kirby Institute Dr David Joffe & Dr David Tuller - Is Long Covid psycho-behavioural or biological? State of evidence Recording of a recent and great talk at Kirby Institute, Australia. "In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial."
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #CovidIsNotOver #sarscov2 #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #postcovidsyndrome #covidbrain #Coronavirus #auscovid19 #neuropasc @MECFS group @AusCOVID19 group @longcovid group @covid19 group

It's the 7th anniversary of this paper.

A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT - BMC Psychology

Background The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome.
BioMed Central
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pacetrial @MECFS group

Today is 8-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from #CFS with graded exercise therapy or CBT vs specialist medical care-alone group in £5m #PACEtrial

Free: https://researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of abstract and title
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pacetrial @MECFS group

4/
“We focus on common phrases that clinicians often tell patients, but which can be nonproductive, inappropriate, and frankly, damaging to the physician-patient relationship.”

#MEcfs #LongCovid
@mecfs @longcovid
#LongCovid #mecfs @MECFS group @longcovid group

3/

“Who is the target audience for the paper?

Physicians of all specialties and other healthcare practitioners, such as psychologists, physical therapists, social workers, nutritionists, and others.”

#MedEd #Mastodon #mecfs #longcovid
@mecfs @longcovid @dysautonomia
#mastodon #LongCovid #mecfs #MedEd @MECFS group @longcovid group @dysautonomia group

2/

“For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.”

#Dysautonomia #PwME #mecfs #longcovid
@mecfs @longcovid @dysautonomia
#LongCovid #mecfs #pwme #Dysautonomia @MECFS group @longcovid group @dysautonomia group

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

https://www.jmir.org/2025/1/e59217/

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots
Journal of Medical Internet Research Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative — Hannah L Mandel "The initial focus among clinicians on respiratory symptoms and widespread lack of knowledge around what were initially considered to be “atypical” presentations, such as postexertional malaise, ME/CFS, POTS, and dysautonomia, also contribute to missingness of relevant diagnoses within the EHR"

Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative

The benefits and challenges of electronic health records (EHRs) as data sources for clinical and epidemiologic research have been well described.
Journal of Medical Internet Research
#cfs #pots #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group @pots group

UK APPG: Minutes of the UK All Party Parliamentary Group for ME/CFS meeting on 5th March

https://appgme.co.uk/wp-content/uploads/2025/03/2025-03-05-APPG-on-ME-Minutes.pdf

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK APPG Minutes of the UK All Party Parliamentary Group for ME/CFS meeting on 5th March A representative from the Department of Health and Social Care gave an update, including reasons for delays as the new government develops its overall policy on health and care. The APPG discussed its plans and priorities.
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

Oh, I'm on the front page of Rolling Stone right now, kinda. Guess I picked a bad moment to look at my phone. Don't be me. Don't look at your phone lol.

Photo is from #MEAction protest at White House, Sept. 2022, right after Biden said the pandemic was over.

Thanks @justyourluck for posting this.

#LongCovid #MEcfs #journalism

https://www.rollingstone.com/culture/culture-features/long-covid-five-years-1235296375/

Long Covid: Five Years Later, Still Little Progress

People with Long Covid are still sick from a pandemic the rest of the world would rather forget.
Elizabeth Yuko (Rolling Stone)
#journalism #LongCovid #mecfs #meaction @Julie Webgirl - Just Your Luck

From Iraq:

Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0316373

From the latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#MEcfs
PLOS ONE Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID — Wasim Talib Mahdi Al Masoodi et al. "a sizable portion of the variation in the physioaffective phenome was accurately predicted by a combination of biomarkers, including GALGALR1 signaling, CRP, PGE2, and z PBT - z SpO2"

Increased galanin-galanin receptor 1 signaling, inflammation, and insulin resistance are associated with affective symptoms and chronic fatigue syndrome due to long COVID

Background Patients with Long COVID (LC) often experience neuropsychiatric symptoms such as depression, anxiety, and chronic fatigue syndrome (CFS), collectively referred to as the physio-affective phenome of LC.
journals.plos.org
#LongCovid #mecfs #PostCovid #PASC #LongHaulers #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @longcovid group

https://mastodon.social/@juchti/114149018231745739 ✍🏽‼️
Ich hatte in der Reha bisher eine Patientin mit Long Covid - ME/CFS. Sie war etwas fitter als es hier geschildert wird, sonst wäre sie gar nicht rehafähig gewesen. Aber erwartungsgemäß hat sich kräftemäßig durch die Reha nichts verändert.

Von der Psychotherapie hat sie trotzdem profitiert (Krankheitsverarbeitung, Kriegstraumatisierung).

Zu Hause war sie von einem Psychologen abgelehnt worden ("ich bin nicht auf Long Covid spezialisiert" 🙄)
#Press
#Politics
#MECFS

Offener Brief an Abgeordnete von Union und SPD zur Aufnahme von MEcfs in den Koalitionsvertrag

Wir sammeln Unterschriften für einen offenen Brief, der an alle Abgeordneten der Union und der SPD gehen soll.
Petitionen.com
#politics #press #mecfs

Here's the latest News in Brief (March 3 - 9), a weekly summary of ME/CFS and Long Covid news from the Science for ME forum:

https://www.s4me.info/threads/news-in-brief-march-2025.43011/#post-592734

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #MyalgicEncephalomyelitis #Science4ME

News in Brief - March 2025

This thread has a Science for ME 'News in Brief' post for each week in March 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
Science for ME
#LongCovid #mecfs #chronicillness #MyalgicEncephalomyelitis #science4me @MECFS group @longcovid group

🧵
Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/
Abstract People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighted, and even dismissed by healthcare professionals. We believe that these adversarial interactions and language are more likely to arise when healthcare professionals are confronting complex chronic illnesses without proper training, diagnostic biomarkers, or FDA-approved therapies. These problematic conversations between practitioners and patients often involve specific words and phrases—termed the “never-words”—can leave patients in significant emotional distress and negatively impact the clinician–patient relationship and recovery. Seeking to prevent these destructive interactions, we review key literature on best practices for difficult clinical conversations and discuss the application of these practices for people with Long COVID, ME/CFS, dysautonomia, and other complex chronic disorders. We provide recommendations for alternative, preferred phrasing to the never-words, which can enhance therapeutic relationship and chronic illness patient care via compassionate, encouraging, and non-judgmental language.

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

People with Long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and other complex chronic disorders consistently report having difficulty obtaining effective and compassionate medical care and being disbelieved, judged, gaslighte…
MDPI
#cfs #LongCovid #mecfs #pwme #PostCovid #PASC #LongHaulers #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #PostCovid19 #lc #covidlonghaulers #postcovidsyndrome #covidbrain #neuropasc @MECFS group @longcovid group

Inhaltswarnung: Long-covid, request for advice

#cfs #COVID #LongCovid #mecfs #PostCovid #recovery #illness #me @longcovid group

trying this out today:

Daily Drop about Long Covid ME/CFS updates: https://turnto.ai/download

#Covid
#LongCovid
#MECFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#COVID #LongCovid #mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome

Medical Costs & Housing

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 & Housing
gofundme.com
#mutualaid #cfs #pots #COVID #LongCovid #disability #mecfs #mcas

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

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

Save Millie's life - Royal Lancaster Infirmary must STOP causing Millie harm

Abi Mills (Change.org)
#mecfs #MyalgicEncephalomyelitis #me

2/
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
International Journal of Environmental Research and Public Health Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — Jones and Younger "White respondents had significantly greater odds of being diagnosed with ME/CFS than non-White respondents. These findings suggest racial disparities in the diagnostic processes for ME/CFS. Furthermore, diagnosis of ME/CFS, but not meeting ME/CFS criteria, was associated with poorer satisfaction with healthcare, suggesting the diagnosis itself may present barriers in the management of symptoms."

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
#cfs #mecfs @MECFS group

Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

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
Abstract 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. The aims of the present study were to (1) identify the agreement between receiving an ME/CFS diagnosis and meeting diagnostic criteria, (2) identify the demographic characteristics associated with receiving a diagnosis, and (3) explore patient satisfaction with healthcare. Self-reported medical history and symptoms were collected via online survey from respondents with and without fatigue. The agreement between self-reporting an ME/CFS diagnosis and meeting the Center for Disease Control’s (CDC) ME/CFS criteria or Institute of Medicine (IOM) criteria was assessed with Cohen’s kappa. Patient characteristics predicting a physician diagnosis were analyzed with logistic regression. Associations between diagnosis, demographics, and healthcare satisfaction were assessed with chi-square tests of independence. There were 1110 responses. The agreement between meeting ME/CFS criteria and reporting an ME/CFS diagnosis was fair (CDC: κ = 0.29; SE = 0.02; IOM: κ = 0.28, SE = 0.03). White respondents had 2.94 greater odds of being diagnosed with ME/CFS than non-White respondents. Having an ME/CFS diagnosis was associated with dissatisfaction with healthcare (χ2 (3, N = 1063) = 14.17, p = 0.003).
#cfs #mecfs #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome @MECFS group

„Chronisch krank, chronisch ignoriert“ – die #Doku über #MECFS auf #Arte zeigt das Leid der Betroffenen. Doch was passiert, wenn Forschung und Versorgung nicht Schritt halten? Mehr dazu im morgigen #Postviral-Newsletter. Jetzt kostenlos anmelden: #covid https://www.riffreporter.de/de/genossenschaft/recherche-kollektive/postviral

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.
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