"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
On this page you will find ongoing ME/CFS clinical trials looking for participants
https://ammes.org/clinical-trials/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice
3/
A summary article which has lots of embedded links:
“New Blood Test For #ChronicFatigueSyndrome Has 91% Accuracy”
https://www.sciencealert.com/new-blood-test-for-chronic-fatigue-syndrome-has-91-accuracy
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis
New level of eccentricity unlocked 😜
I like getting some “outside time” but sometimes rain may be coming so have started to lie under the table
[As I said before, with my ME I’m too ill to go for walks]
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome
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
4/
We got this email today which confirms the competition is still ongoing.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
@mecfs
#myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice
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
From the Solve ME/CFS Initiative:
Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition features key resources from our website that community members can utilize as they navigate their journeys with #MECFS or #LongCovid.
Click to read: https://solvecfs.org/wp-content/uploads/2023/09/Solve-Summer-2023-Digital-Resources-Chronicle.pdf
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #CFSME #CFIDS
#SEID #NeuroME
#mecfs #LongCovid #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfsme #cfids #seid #NeuroME
UK Patient & Public Involvement (PPI) in ME/CFS research
An ME/CFS-related Immune Research Project based at Imperial College is looking to recruit 2 PPI members for an initial scoping call. The proposal is not currently funded. If the grant is awarded then there will be quarterly online meetings and some remuneration
From @CGATist
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE @s4me
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye
The German government agency BMBF has announced new funding for the "promotion of interdisciplinary networks for research into the pathomechanisms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)".
English-language discussion of this
https://www.s4me.info/threads/german-government-announces-new-funding-guidelines-for-me-cfs.35107/ with German link
@mecfs_de @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome
Bekanntmachung
Datum:
01.09.2023 - 11.12.2023
Richtlinie zur Förderung interdisziplinärer Verbünde zur Erforschung der Pathomechanismen von #MyalgischerEnzephalomyelitis /#ChronischemFatigueSyndrom (ME/CFS), Bundesanzeiger vom 01.09.2023
@mecfs_de @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#myalgischerenzephalomyelitis #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome
"4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: https://rb.gy/om2il Every sample returned strengthens the results of our research."
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE
#decodeme #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye
#DecodeME
Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home
Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25000 DNA samples, incl. 5000 diagnosed with ME/ #CFS following #Covid19 infection
https://www.decodeme.org.uk/portal/
@mecfs #pwlc #LC
#MEcfs #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE
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#decodeme #cfs #COVID19 #pwlc #lc #mecfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye
UK ME Association Advertising Standards: Chrysalis Effect cannot claim ME/CFS recovery!
"The ME Association had made a complaint to the Advertising Standards Authority (ASA) relating to recovery claims made by the Chrysalis Effect Ltd. on its website in regard to ME/CFS. The ASA issued its ruling yesterday, and upheld the complaint."
@mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me
Canada - Quebec INESSS, the body in charge of medical guidelines and recommendations, published a set of documents in April 2023 for the clinical management of ME/CFS. There are three surveys (in French) asking for feedback on the three main documents.
#sfc #Syndromedefatiguechronique #encephalomyelitemyalgique #em @mecfs
#MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE #ME #millionsmissing #CFSME #CFIDS
#sfc #syndromedefatiguechronique #encephalomyelitemyalgique #em #mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mye #me #millionsmissing #cfsme #cfids
Petition "Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review"
The number of supporters by today has reached over 5,000 people from 57 countries. Over 300 added comments, many telling of their experience of long term harm from exercise therapy.
Link with supporting information:
https://shorturl.at/inopJ
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#mecfs #cfs #myalgice #pwme #MyalgicEncephalomyelitis #chronicfatiguesyndrome
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
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#MyalgicEncephalomyelitis #chronicfatiguesyndrome #LongCovid #mecfs #cfs #pwme #myalgice #pwlc #postcovidsyndrome #PostCovid #PostCovid19 #lc
Noise and light hypersensitivity in ME/CFS
Summary of a recent paper by @MEresearchUK
https://www.meresearch.org.uk/noise-and-light-hypersensitivity-in-me-cfs/
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @mecfs
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice
#MEACTION GEORGIA SUPPORT CALL
https://www.meaction.net/event/meaction-georgia/2023-09-21/
People anywhere in the world are welcome.
1:00 PM EDT/6 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldclock/fixedtime.html?msg=%23MEACTION+GEORGIA+SUPPORT+CALL&iso=20230921T13&p1=25&ah=1
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE
#meaction #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #myalgice