ME/CFS HEALTH
@mecfshealthTalks by health professionals, patients and advocates about ME/CFS. ME/CFS is short for Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome.
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@MEAdvNetAu
@JennMeagher
@MyhillNews
@MEResearchUK
@me_perspective
@CortJohnson
@causer_deborah
@laradenkova
@CenterRes
@BiomedicsMECFS
@mecfsbiobank
@ClairME_
@Huisarts_Vink
Health professionals and patients unite in the mini-documentary After Unrest to demystify, the severe disabling disease M.E/CFS. Inspired by and with thanks to @jenbrea's @unrestfilm After Unrest (27mins) - youtu.be/yKoheNZlqXg
What would an architect need to know before designing an ME/CFS friendly home? Emerge Australia is posting questions from student architects facing this very question. Visit their facebook page to add your voice to the mix!
Some of you may know that there is a team of student architects local to us in Melbourne currently completing a project on ME/CFS and living environments. We've agreed to ask you some questions on their... facebook.com/EmergeAustrali…
Don't let @CDCgov repeat a terrible mistake. Demand #pwme and expert input for ME treatment guidelines! Sign and share the petition. #mecfs #NoMoreShoddyWork my.meaction.net/petitions/dema…
Are you at risk of getting #MECFS, #autoimmune disease, other #chronicillness? This paper identifies immune profiles in 100s of people and identified signatures that may predict future immune responses; strong vs weak; healthy vs pathogenic @PNASNews pnas.org/content/early/…
Thanks for highlighting this great little video about ME/CFS. #mecfs (in 3mins and 9 secs)
A really beautiful 3 mins and 9 seconds. Just came across this while including it in this week's research and media digest. Highly recommended. vimeo.com/218047387
Prof. Sonya Marshall-Gradisnik lays out exactly what her research says about GET* and CBT* as treatments for #mecfs (more at 20:14 in the video #afterunrest) youtu.be/yKoheNZlqXg #biomedicalresearchmatters *Graded exercise therapy and Cognitive Behavioural Therapy
To hear more from a fantastic researcher, Prof. Sonya Marshall-Gradisnik (co-director of the National Centre for Neuroimmunology and Emerging Diseases @Griffith_Uni) sign up for our video - #AfterUnrest - Health Professionals on ME/CFS - coming soon. eepurl.com/cWKIZ5
A quick question for Spanish followers - What's the best word, or words, for "Pacing" in Spanish? Cúal es la mejor palabra, o palabras, para decir "Pacing" en Español? Gracias! @SFC_EM_Investig @SFC_Valencia @SFCencuentro @SindromeSQM @SFC_Accion
Learn more about the dangers of ordinary activity for ME/CFS patients and how to support them In the mini documentary, After Unrest youtube.com/watch?v=yKoheN…
Professor Don Staines from the NCNED confirms that many patients with ME/CFS are made worse by exercise, and that some patients are left bedridden for several weeks after an inordinately small amount of exertion. facebook.com/mecfshealthpag…
"I felt embarrassed to be a doctor, hearing some of the stories in that movie [@unrestfilm], and I think we, as doctors, have to get much better at saying, as @jenbrea said in her TED talk - I don't know" bit.ly/2BkVUx1
Melbourne GP, Dr Don Lewis, and Senior Research Fellow at Monash University, @Dr_M_Guthridge, were interviewed about ME/CFS by @anuchristine on Evenings on @abcsydney last night. You can listen to the interview below, which starts at 1:34:42 #mecfs abc.net.au/radio/sydney/p…
Exercise can improve symptoms in many diseases BUT exercise triggers 'Post Exertional Malaise' (PEM) in #pwME which actually worsens #MECFS symptoms This study develops a questionnaire for diagnosing/tracking PEM in ME/CFS patients #PLOSONE #MyalgicE buff.ly/2xIT4kO
My article on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or #MECFS published by @ConversationEDU has now also been published by @medical_xpress #pwME #MyalgicE #SickNotWeak buff.ly/2LybZ4V
Sunday Mail Brisbane @janellehmiles talks to @Griffith_Health Professors Sonya Marshall-Gradisnik and Don Staines (NCNED) about a diagnostic test as a crucial first step in understanding Chronic Fatigue Syndrome. @MenziesHealth @mecfshealth #MECFS
An in-depth article about ME/CFS. It covers - the latest research from NCNED (@Griffith_Uni) - the lack of research funding - the need for new @RACGP guidelines - young Australian’s Ketra & Josh’s stories and their hopes for a better future. @MenziesHealth @MEActNetAu
She's only 32 and has lived in aged care on the Gold Coast with a mystery illness for five years. Read more about the Qld scientists trying to help: couriermail.com.au/news/queenslan… @MenziesHealth @Griffith_Uni @mecfshealth #me-cfs
Thank you to @robbie_buck and @wendy_harmer for the excellent interview with @Dr_M_Guthridge and Sydney GP, Dr Mark Donohoe, on @abcsydney breakfast this morning. Interview starts at around 3 hours 1 min, and runs for just over 20 minutes. #mecfs abc.net.au/radio/sydney/p…
Very excited to be talking to @JimmyRHill on @2ser this morning after 10:00am about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or #mecfs Are #MECFS patients just a bit tired? Or do they suffer from a severely debilitating and disabling disease?
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Who to follow
-
ME Advocacy Network Australia (MEANA)
@MEAdvNetAu -
Jenny Meagher
@JennMeagher -
Dr Sarah Myhill
@MyhillNews -
ME Research UK
@MEResearchUK -
ME perspective
@me_perspective -
Cort Johnson
@CortJohnson -
Deborah Causer
@causer_deborah -
Karen Radenkova
@laradenkova -
Leonard Jason
@CenterRes -
Biomedics MECFS
@BiomedicsMECFS -
CureME - UK ME/CFS Biobank
@mecfsbiobank -
ClairME
@ClairME_ -
Mark Vink, MD
@Huisarts_Vink
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