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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 @longcovid @mecfs
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Hope to see some of you at this event in Dublin 15. 👋
If the weather is suitable, I plan to be outside. There are benches there for this purpose.
#NeuroME #MyalgicEncephalomyelitis
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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
@mecfs #longcovid @longcovid
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“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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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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A pilot cross-sectional investigation of symptom clusters & associations with patient-reported outcomes in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome & #PostCOVID19 Condition
"None of the four symptom clusters identified were unique to ME/CFS or #PCC"
https://link.springer.com/article/10.1007/s11136-024-03794-x
@mecfs @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is associated with long-term disability and poor quality of life (QoL). Cardinal ME/CFS symptoms (including post-exertional malaise, cognitive dysfunction and sleep disturbances) have been observed in Post COVID-19 Condition (PCC). To gain further insight into the potential role of ME/CFS as a post-COVID-19 sequela, this study investigates associations between symptoms and patient-reported outcomes, as well as symptom clusters. Methods Participants included Australian residents aged between 18 and 65 years formally diagnosed with ME/CFS fulfilling the Canadian or International Consensus Criteria or PCC meeting the World Health Organization case definition. Validated, self-administered questionnaires collected participants’ sociodemographic and illness characteristics, symptoms, QoL and functional capacity. Associations between symptoms and patient-reported outcomes were investigated with multivariate linear regression models. Hierarchical cluster analysis was performed to identify symptom clusters. Results Most people with ME/CFS (pwME/CFS) and people with PCC (pwPCC) were female (n = 48/60, 80.0% and n = 19/30, 63.3%, respectively; p = 0.12). PwME/CFS were significantly younger (x̄=41.75, s = 12.91 years) than pwPCC (x̄=48.13, s =10.05 years; p =0.017). Autonomic symptoms (notably dyspnoea) were associated with poorer scores in most patient-reported outcome domains for both cohorts. None of the four symptom clusters identified were unique to ME/CFS or PCC. Clusters were largely delineated by the presence of gastrointestinal and neurosensory symptoms, illness duration, ME/CFS criteria met and total symptoms. Conclusions Illness duration may explain differences in symptom burden between pwME/CFS and pwPCC. PCC diagnostic criteria must be refined to distinguish pwPCC at risk of long-term ME/CFS-like illness and subsequently deliver necessary care and support.
From: @Notjustfatigue
Is it a coincidence that three times more women than men are living with #MECFS and #MECFS is our country’s most underfunded disease, with respect to the severity of disease and the number of people affected? No. This is the seventh video in a ten part video series by #NotJustFatigue
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME
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Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org
Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing
Myalgic Encephalomeyelitis, a disease commonly known as “Chronic Fatigue Syndrome” or “ME/CFS”, is a severely debilitating physiological illness. Of those suffering, 75% are unable to attend school or work, and 25% are completely bed-bound or home-bound with a quality of life comparable to that of congestive heart failure. Yet, there are no approved treatments, biomarkers, or diagnostic tests. In fact, there are still doctors who do not believe it’s “real”.
Tom Kindlon