"What #LongCOVID investigators can learn from four decades of ME/CFS research"
Free:
https://www.sciencedirect.com/science/article/pii/S2949834123000211
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#LongCovid #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
ME/CFS Activity Management with a Heart Rate Monitor from Workwell Foundation @4Workwell
https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc
Medically Documenting Disability in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) Cases (2019)
Coauthored by the lawyer who prevailed on the disability case of @brianvastag disability case and a clinician who has done many ME/CFS disability cases
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyE #ME #millionsmissing #CFSME #CFIDS
Probably of use to some with #LongCovid @longcovid
#PwLC #PostCovidSyndrome #LC #postcovid
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #mye #me #millionsmissing #cfsme #cfids #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid
“What Does It Mean to Really, Truly Rest?” (December 2022)
https://www.self.com/story/what-does-rest-mean
#spoonie @spoonies #chronicillness @chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting @mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid
#spoonie #chronicillness #fatigue #fatiguetips #chronicfatigue #chronicfatiguesucks #pacing #rest #resting #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid
September 19
https://batemanhornecenter.org/event/online-support-group-55/
3 PM EDT/8 PM GB & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=September+19+online+support+group&iso=20230919T13&p1=220&ah=1
Topic: Let's Talk about What Works
Support Group Format
The first 30-minutes will focus on a predetermined topic followed by a general discussion. Support groups are designed to include people with #MECFS, #FM, #LongCOVID, etc.
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFS #PwME @longcovid
#PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#mecfs #fm #LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #cfs #pwme #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc
#COVID19 Induces #Neuroinflammation & Suppresses Peroxisomes in the Brain
“The present studies point to a role of persistent neuroinflammation, especially inflammasome activation, and peroxisome biogenesis factor suppression as contributing determinants of the neurological sequelae of #COVID-19”
@longcovid #LongCovid #PwLC #PostCovidSyndrome #LC #postcovid @covid @covid19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver
#COVID19 #neuroinflammation #covid #LongCovid #pwlc #postcovidsyndrome #lc #PostCovid #COVID_19 #sarscov2 #novid #CovidIsNotOver
2/
“Fecal transplantation from #PostCovid subjects to germ-free mice led to lung inflammation & worse outcomes during pulmonary infection by multidrug-resistant Klebsiella pneumoniae. transplanted mice also exhibited poor cognitive performance. Overall, we show prolonged impacts of #SARSCoV2 infection on the gut microbiota that persist after subjects have cleared the virus”
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC @covid
#COVIDー19 #COVID19 #COVID #COVID_19
#PostCovid #sarscov2 #LongCovid #pwlc #postcovidsyndrome #lc #covidー19 #COVID19 #covid #COVID_19
8/
"It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out."
@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
7/
"You may have to start cancelling plans, which can leave you feeling flaky and unreliable, especially when those plans were with someone that saw you on a good day recently."
@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
6/
"Fluctuating conditions are also shockingly unpredictable, especially at first, when you don’t know what will trigger a flare or are not yet experienced enough to recognize the warning signs."
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
@chronicillness @spoonies @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#chronicillness #chroniclife #chronicpain #spoonielife #ChronicIllnesses #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
New:
Pre-pandemic activity on a #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome support forum is highly associated with later activity on a #longCOVID support forum for a variety of reasons: A mixed methods study
Free
https://journals.plos.org/plosone/article%3Fid=10.1371/journal.pone.0291173
This is sympathetic
@mecfs
#MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
1/
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #LongCovid #mecfs #cfs #pwme #myalgice #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
“Trial By Error: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long #Covid; (US) Senators United on #LongCovid” by David Tuller DrPH (September 7)
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
#PwLC #PostCovidSyndrome #postcovid @covid @covid19
#COVIDー19 #COVID19 #COVID_19 #SARSCoV2
#covid #LongCovid #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #pwlc #postcovidsyndrome #PostCovid #covidー19 #COVID19 #COVID_19 #sarscov2
Medscape have updated their free CDC-funded CPD course on #MECFS
I never looked in detail at the previous course but this looks quite similar
It can be accessed with free registration.
https://www.medscape.org/viewarticle/995777
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MedEd #CFS #PwME @mecfs @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #MedMastodon
#mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome #MedEd #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #MedMastodon
Free, professionally-facilitated online support group
September 12 @ 1:00 pm - 2:00 pm MDT Free
https://batemanhornecenter.org/event/online-support-group-54/
3 PM EDT/8 PM GB and Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=September+12+Online+Support+Group&iso=20230912T13&p1=220&ah=1
Topic: Strategies for Approaching Treatments
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #LongCovid #pwLC #postcovidsyndrome #PostCovid #postCOVID19
From: Bateman Horne Center
@BatemanHorne
Introducing video 6 of the Post-Exertional Malaise series, Neurobiological Changes
👉 View the entire PEM video series: http://bit.ly/3s4a3us
#PEM #PESE #MERC #MedicalEducation #MillionsMissing @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC
#PEM #pese #merc #medicaleducation #millionsmissing #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
Saturday, September 16
CAREGIVER SUPPORT CALL (for caregivers of people with ME (myalgic encephalomeylitis), #LongCOVID and associated conditions)
https://www.meaction.net/event/me-caregiver-support-call/2023-09-16/
3:30 PM EDT/8:30 PM in Great Britain & Ireland
Find the time in your time zone:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=September+16+CAREGIVER+SUPPORT+CALL&iso=20230916T1530&p1=179&ah=1
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers
#LongCovid #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice #pwLC #postcovidsyndrome #PostCovid #postCOVID19 #lc #covidlonghaulers #LongHaulers
Prevalence and Risk Factors of de Novo Widespread Post-#COVID Pain in Non-Hospitalized COVID-19 Survivors: A Nation-Wide Exploratory Population-Based Survey
“de novo [=new] widespread #postCOVID #pain was present in 5.3% of non-hospitalized COVID-19 survivors one year after infection (14.4±6.0 months)”
@longcovid
#LongCovid #PwLC #PostCovidSyndrome @covid @covid19
#COVIDー19 #COVID19 #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver
#covid #PostCovid #pain #LongCovid #pwlc #postcovidsyndrome #covidー19 #COVID19 #COVID_19 #sarscov2 #novid #CovidIsNotOver
"It's likely you know someone dealing with long COVID"
Excellent 24-minute, August 30 audio interview on NPR with science journalist @edyong209 & co-founder of the Patient-Led Research Collaborative and #LongCovid/ME sufferer
A lot about ME/CFS
https://www.npr.org/podcasts/1137012696/the-rundown
@longcovid
#PwLC #PostCovidSyndrome #postcovid @covid @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 NoVID@chirp.social #novid @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #MyalgicE
#LongCovid #pwlc #postcovidsyndrome #PostCovid #covidー19 #COVID19 #covid #COVID_19 #sarscov2 #novid #MyalgicEncephalomyelitis #mecfs #cfs #pwme #myalgice
New pre-print from @C_Scheibenbogen team in Germany
"Observational Study of Repeat Immunoadsorption (RIA) in Post-COVID ME/CFS Patients with Elevated Beta-2-Adrenergic Receptor Autoantibodies"
Free fulltext:
https://www.medrxiv.org/content/10.1101/2023.08.31.23294813v1
Exciting to see a biomedical research randomised control trial planned
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice
(From March)
Canada’s Minister of Health, announced a $20 million investment from the Canadian Institutes of Health Research (CIHR) to support a pan-Canadian Post COVID-19 Condition Research Network called Long COVID Web
@longcovid
#LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers
@covid @covid19
#COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2
#LongCovid #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc #covidlonghaulers #LongHaulers #covidー19 #COVID19 #covid #COVID_19 #sarscov2