#cfsme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #cfsme, aggregated by home.social.
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We were involved in helping to organise this interview.
We think it is likely in the Donegal Democrat newspaper this week as Aoife works for them
https://www.donegallive.ie/news/milford-md/there-is-always-light-at-the-end-of-the-tunnel-8646991 -
We were involved in helping to organise this interview.
We think it is likely in the Donegal Democrat newspaper this week as Aoife works for them
https://www.donegallive.ie/news/milford-md/there-is-always-light-at-the-end-of-the-tunnel-8646991 -
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“On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing -
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“On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing -
(US)
Tell Congress: Fund ME/CFS Research NowDeadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
(US)
Tell Congress: Fund ME/CFS Research NowDeadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
(US)
Tell Congress: Fund ME/CFS Research NowDeadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
(US)
Tell Congress: Fund ME/CFS Research NowDeadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
(US)
Tell Congress: Fund ME/CFS Research NowDeadline is April 15 I believe
https://solvecfs.quorum.us/campaign/157943/
Image is from the AMMES April 2026 newsletter
#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome -
Good news, my safe foods I’d been reacting to these last few weeks has gone back to lower reaction. It’s my last lot of antibiotics tomorrow, so looks like being ill made everything worse, which makes sense.
When I went to the drs last week, they were surprised I didn’t know I had strep throat. I said I’m just used to feeling really ill and being told it’s fibromyalgia, or just something I have to deal with, I hadn’t even gone about my sore throat snd earache 😂 This was a sympathetic locum, who said it shouldn’t be like this.
#ChronicIllness #Fibromyalgia #Fibro #ME #CFSME #ChronicPain #MCAS #Anxiety #Perimenopause #Depression #Agoraphobia #ADHD #AuDHD #Autistic #Palpatations probably more
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Good news, my safe foods I’d been reacting to these last few weeks has gone back to lower reaction. It’s my last lot of antibiotics tomorrow, so looks like being ill made everything worse, which makes sense.
When I went to the drs last week, they were surprised I didn’t know I had strep throat. I said I’m just used to feeling really ill and being told it’s fibromyalgia, or just something I have to deal with, I hadn’t even gone about my sore throat snd earache 😂 This was a sympathetic locum, who said it shouldn’t be like this.
#ChronicIllness #Fibromyalgia #Fibro #ME #CFSME #ChronicPain #MCAS #Anxiety #Perimenopause #Depression #Agoraphobia #ADHD #AuDHD #Autistic #Palpatations probably more
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Barely any sleep for me, cannot switch off.
#Insomnia #ChronicPain #Fibromyalgia #CFSME #CFS #Anxiety #Painsomnia -
Barely any sleep for me, cannot switch off.
#Insomnia #ChronicPain #Fibromyalgia #CFSME #CFS #Anxiety #Painsomnia -
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“When the people in your life don’t understand PEM [post-exertional malaise], they’re not just failing to understand a symptom. They’re failing to understand the central mechanism that governs your entire existence. They’re missing why you can’t just meet them for a meal, why you can’t work full-time, why you can’t be the person you used to be”
@mecfs @longcovid #longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME -
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“When the people in your life don’t understand PEM [post-exertional malaise], they’re not just failing to understand a symptom. They’re failing to understand the central mechanism that governs your entire existence. They’re missing why you can’t just meet them for a meal, why you can’t work full-time, why you can’t be the person you used to be”
@mecfs @longcovid #longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs -
+++ Off-Topic: ME/CFS +++
Im Krankenhaus habe ich die Dokumentarfilmerin und Regisseurin Sibylle Dahrendorf kennengelernt, die seit Jahren mit ME/CFS lebt. Ihre Ausdauer und innere Stärke haben mich tief beeindruckt.
Die Dokumentation „Chronisch krank, chronisch ignoriert“ (ARTE, 2025) thematisiert eindringlich die Multisystemerkrankung ME/CFS, ihre Komorbiditäten und die strukturellen Versorgungslücken.
Bitte um Beteiligung, damit die wichtige Doku verfügbar bleibt:
https://www.openpetition.de/petition/online/verlaengerung-der-online-verfuegbarkeit-arte-doku-chronisch-krank-chronisch-ignoriert#MECFS #LongCovid #CFSME #ChronicFatigueSyndrome #MEAwareness #CFSAwareness #Spoonie #ChronicIllness #OpenPetition #Petition #ARTE #Gesundheitssystem #ChronischKrankChronischIgnoriert
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+++ Off-Topic: ME/CFS +++
Im Krankenhaus habe ich die Dokumentarfilmerin und Regisseurin Sibylle Dahrendorf kennengelernt, die seit Jahren mit ME/CFS lebt. Ihre Ausdauer und innere Stärke haben mich tief beeindruckt.
Die Dokumentation „Chronisch krank, chronisch ignoriert“ (ARTE, 2025) thematisiert eindringlich die Multisystemerkrankung ME/CFS, ihre Komorbiditäten und die strukturellen Versorgungslücken.
Bitte um Beteiligung, damit die wichtige Doku verfügbar bleibt:
https://www.openpetition.de/petition/online/verlaengerung-der-online-verfuegbarkeit-arte-doku-chronisch-krank-chronisch-ignoriert#MECFS #LongCovid #CFSME #ChronicFatigueSyndrome #MEAwareness #CFSAwareness #Spoonie #ChronicIllness #OpenPetition #Petition #ARTE #Gesundheitssystem #ChronischKrankChronischIgnoriert
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Jak odróżnić Zespół Przewlekłego Zmęczenia ME/CFS od depresji?
@alex_lad_bug wstawiło na https://szmer.info/post/11612983 wpis:
> Encefalopatia mialgiczna/zespół przewleklego zmęczenia (angielski skrót ME/CFS) to choroba która może być wywołana infekcją wirusową, w tym przez covid-19. W wyniku pandemii przybyło wiele osób cierpiących na tę chorobę, ale niestety lekarze i lekarki bardzo mało o niej wiedzą. Często w przypadku nadmiernego zmęczenia po infekcji zalecają stopniowy powrót do aktywności fizycznej. Jednak przy ME/CFS może to wywołać więcej szkody niż pożytku, dlatego bardzo ważne jest właściwe postawienie diagnozy. Polecam cały kanał Chroniczynka na YouTube.
https://www.youtube.com/watch?v=sc68QUazFDA
Dodam, że Zespół Przewlekłego Zmęczenia wynika także ze Stwardnienia Rozsianego!
#covid #cfsme #zmeczenie #stwardnienierozsiane -
Jak odróżnić Zespół Przewlekłego Zmęczenia ME/CFS od depresji?
@alex_lad_bug wstawiło na https://szmer.info/post/11612983 wpis:
> Encefalopatia mialgiczna/zespół przewleklego zmęczenia (angielski skrót ME/CFS) to choroba która może być wywołana infekcją wirusową, w tym przez covid-19. W wyniku pandemii przybyło wiele osób cierpiących na tę chorobę, ale niestety lekarze i lekarki bardzo mało o niej wiedzą. Często w przypadku nadmiernego zmęczenia po infekcji zalecają stopniowy powrót do aktywności fizycznej. Jednak przy ME/CFS może to wywołać więcej szkody niż pożytku, dlatego bardzo ważne jest właściwe postawienie diagnozy. Polecam cały kanał Chroniczynka na YouTube.
https://www.youtube.com/watch?v=sc68QUazFDA
Dodam, że Zespół Przewlekłego Zmęczenia wynika także ze Stwardnienia Rozsianego!
#covid #cfsme #zmeczenie #stwardnienierozsiane -
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME
@mecfs @longcovid -
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME
@mecfs @longcovid -
You know you’re chronically ill when the drs is always selected whenever you open your contacts 😂
Absolute nightmare getting through this morning, I managed a to get a telephone appointment, I’ll go to walk in/A&E if anything gets worse.
#Fibromyalgia #Fibro #Type2Diabetic #CFSME #CFS #ME #Depression #Anxiety #Agoraphobia #AuDHD #ADHD #Autistic #Allergies #MCAS #HistamineIntolerance
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You know you’re chronically ill when the drs is always selected whenever you open your contacts 😂
Absolute nightmare getting through this morning, I managed a to get a telephone appointment, I’ll go to walk in/A&E if anything gets worse.
#Fibromyalgia #Fibro #Type2Diabetic #CFSME #CFS #ME #Depression #Anxiety #Agoraphobia #AuDHD #ADHD #Autistic #Allergies #MCAS #HistamineIntolerance
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2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @longcovid @mecfs -
2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @longcovid @mecfs -
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @longcovid @mecfs
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @longcovid @mecfs
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“The estimated annual cost of ME/CFS, ranging from $225 billion to $305 billion, reflects both the direct strain on healthcare systems and the indirect costs of lost productivity and diminished quality of life.”
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Can science crack the mystery of ME? – podcast
Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community. To find out more, Madeleine Finlay speaks to science editor Ian Sample and to Nicky Proctor, who has ME and took part in the research. She also hears from Beth Pollack, a research scientist at the Massachusetts Institute of Technology who studies ME/CFS and related conditions, about how scientific understanding of the illness has improved and how scientists are transforming this knowledge into ideas about future treatments
I have not listened to this yet so make no comments.
https://www.theguardian.com/science/audio/2025/aug/21/can-science-crack-the-mystery-of-me-podcast
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Who knew that #MARINA, the Welsh singer & poët, is a #pwME i.e. suffers from ME/CFS.
#MyalgicEncephalomyelitis #ME #MEcfs
#ChronicFatigueSyndrome #CFS #CFSmeLink to #People magazine:
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs @longcovid -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs @longcovid -
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“DecodeME has provided the first robust evidence that genetic variation contributes to the risk of developing ME/CFS, which should help to reduce the stigma of the illness."
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs @longcovid -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs @longcovid -
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @mecfs @longcovid
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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @mecfs @longcovid
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2/
Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME #mecfs
@mecfs #longcovid @longcovid -
2/
Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
#MyalgicE #MEeps #CFSME #LongCovid #NeuroME #mecfs
@mecfs #longcovid @longcovid -
2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid -
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From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf#MyalgicE #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid -
10/
“You can help support patients to handle this life transition, the grief, the stress that comes from having this illness without removing it.”
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10/
“You can help support patients to handle this life transition, the grief, the stress that comes from having this illness without removing it.”
