#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 -
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 -
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 -
4/
“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 -
4/
“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 -
4/
“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 -
4/
“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 -
4/
“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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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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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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Does anyone else get zaps? Like little electric shocks in their body. Had some scary ones across my chest this morning, they didn’t hurt, but very uncomfortable.
Apparently could be linked to POTS or mould, which would fit with the MCAS and histamine intolerance.
I’m seeing my gp on Tuesday, but will go to walk in/emergency if gets worse etc.
#POTS #MCAS #HistamineIntolerance #Fibromyalgia #CFSME #CFS #ME #Anxiety #Depression #Agoraphobia #AuDHD #ADHD #Autistic
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Posted @withregram • @decodemestudy Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today https://shorturl.at/kmnK7
#PwME #DNA #GWAS #Genetics@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #cfsme
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Posted @withregram • @decodemestudy Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today https://shorturl.at/kmnK7
#PwME #DNA #GWAS #Genetics@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #cfsme
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Posted @withregram • @decodemestudy Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today https://shorturl.at/kmnK7
#PwME #DNA #GWAS #Genetics@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #cfsme
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Posted @withregram • @decodemestudy Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today https://shorturl.at/kmnK7
#PwME #DNA #GWAS #Genetics@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #cfsme
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Posted @withregram • @decodemestudy Today is #NationalDNADay Genetic studies have transformed our understanding of many diseases. By studying your DNA, we aim to identify the genetic differences in those with #MECFS. Join #DecodeME today https://shorturl.at/kmnK7
#PwME #DNA #GWAS #Genetics@mecfs @cfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #cfsme
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From: Solve ME/CFS Initiative
Our latest journal includes our newest class of #RamsayResearchers, exciting updates about the reach of our #HowLong? PSA & interview tour, a community support resource guide & more! http://ow.ly/ffmF50M3ICf
"Ramsay researchers have gone on to earn $8 million in follow-on funding, much of it from the NIH. That's a 8x return on our investment in preeminent scientists & researchers driving toward treatments"
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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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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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My body has been failing me for a while now, but it feels like it hasn’t taken a day off for ages.
I now have a swollen little toe, big toe on same foot hurts, and general feet cramping. My thumb is still slightly swollen, my knees are worse. But it’s probably just a #FibroFlare
I’ve got pain relief and compresses, and resting them as much as possible.
I think I need a new doctor.
#Fibromyalgia #Flare #CFSME #ChronicPain #Diabetic #AuDHD #Autistic #ADHD #Diabetic #MentalHealth #IBS #OAB
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CW: Mental health, struggling, renting
1) I’ve been struggling these last few months, hence not really being on here so much. I’m not sure what would happen if I didn’t have the kids. It’s so hard to see the point in anything.
Cont…
#Depression #Anxiety #ADHD #AuDHD #Autistic #UKRenting #Damp #Landlords #LettingAgents #Fibromyalgia #CFS #CFSME #ChronicFatigue #Diabetic #OAB #IBS #NoSupport #Lonely #SingleParent #Overwhelmed
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I just got told ‘I hope you get well soon’ so I rage bought this t shirt. I’ve been meaning to buy, every time there’s a campaign. They also do an easy to read font. This campaign by The Chronic Iconic ends in 2 days.
https://www.weareprintsocial.com/campaigns/rainbowngws-3
#NotGettingWellSoon #Fibromyalgia #Fibro #CFSME #CFS #ChronicPain #ChronicFatigue #FibroFog #BrainFog #Anxiety #Depression #FibroFlare #ADHD #Autistic #AuDHD #IBS #Diabetic #TheChronicIconic #ChronicAndIconic #WeArePrintSocial
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really need to get out of this cycle I’m in. But I crash out straight after work as I physically cannot stay awake or function much past it. Then before I know it it’s 10/11pm and I’m awake.
It’s frustrating but managing chronic fatigue and headaches etc is tricky #NEISvoid #ChronicIllness #FibroProbs #Fibro #Fibromyalgia #FibroFog #ChronicPain #CFS #CFSME #MECFS #ChronicFatigue #ChronicFatigueSyndrome #Spoonie #MentalHealth #MentalIllness #bpd #newbie #MadMastodon #TwitterMigrant #Disabled 💜
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#EpsteinBarr virus-acquired immunodeficiency in #myalgicencephalomyelitis —Is it present in #longCOVID?
Free full text:
https://tinyurl.com/25e8vwt4Hypothesis paper discussing the role of #EBV in #postCovid
@longcovid #PwLC #PostCovidSyndrome #LC @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @mecfs
#MEcfs #CFS #MyalgicE #PwME #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS -
#EpsteinBarr virus-acquired immunodeficiency in #myalgicencephalomyelitis —Is it present in #longCOVID?
Free full text:
https://tinyurl.com/25e8vwt4Hypothesis paper discussing the role of #EBV in #postCovid
@longcovid #PwLC #PostCovidSyndrome #LC @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @mecfs
#MEcfs #CFS #MyalgicE #PwME #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS -
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 -
4/
“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 -
4/
“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 -
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
@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
@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 -
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 @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 @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 #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 -
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 @longcovid @mecfs