Top Tweets for #PWMECFS
Reading this and I’m in tears because while I’m not a #pwMECFS I faced a similar dynamic with having to demonstrate compliance and that I’m not lazy to be seen as deserving of care as well as no pain management and unnecessary withholding of food despite starvation
New article:
https://t.co/6klveUYj5M
@MECFScomrade The least safe place when you have #mecfs at the moment is a hospital considering not 1 in the UK is equipt to deal with #PwMECFS & most Dr arent upto date with NICE guidelines so more harm than help with be done making your severity level increase & worst case for some death
Prof Maureen R. Hanson will be speaking at our #MECFS, #longcovid & #GulfWarIllness International Conference 2025: RID in November.
#GriffithUni, #GriffithHealth, #pwmecfs, #pwLC
@tessamunt Sadly funding still highly inadequate for number those diagnosed & still to be compared with other condition numbers,right now there are still #pwMECFS being sectioned under the mh act in hospitals after going to get help with feeding tubes,we are dying! When it could all changed
The lived experiences of #MECFS consumers have directly informed my PhD research. I am sincerely thankful to all the people with ME/CFS from whom I have had the opportunity to learn throughout my PhD candidature and who have made my research possible.
#WorldMEDay #pwMECFS #pwME
People with #MECFS have significantly poorer quality of life across all aspects of health compared with healthy people. Yet, the symptoms experienced by people with ME/CFS are often dismissed and the condition is poorly recognised in healthcare policies.
#MEAwarenessDay #pwMECFS
@Griffith_Uni @NEatonfitch @PLOSONE @ThapaliyaK Ms Chandi Magawa’s poster outlined the findings of one of the studies contributing to her PhD project. This study observed impaired functioning of the TRPM3 calcium ion channel in the cells and cell organelles of #pwMECFS when compared with healthy controls.
#MECFS #pwME
@Griffith_Uni @NEatonfitch Dr Kiran Thapaliya’s presentation discussed findings from a recent NCNED publication in @PLOSONE, which documented enlarged hippocampal volumes among #pwMECFS and #pwLC when compared with healthy controls.
Read the full publication here: https://t.co/N2N6g7ayRJ
Latest findings in our #MECFS, #longCOVID and #GulfWarIllness research were recently presented by NCNED Researchers at Griffith University’s 5th annual Early Career Researcher Symposium last week.
#GriffithUniversity #GriffithUni #GriffithHealth #pwMECFS #pwME #pwLC #GWI
Liebe #pwMECFS aus #Esslingen und Umgebung: Wer es am Sonntag nicht zum ME/CFS-Awareness-Gottesdienst in die Osterfeldkirche ES-Berkheim schafft, aber trotzdem gerne sichtbar wäre, darf mit auf dieses Plakat!
Das Herz ist oben offen, so dass noch viele Namen hineinfallen können.
Over 150,000 more people in England have #ME than previously thought, study finds https://t.co/GfIuXE21FL Once again #PWMEcfs will be ignored, pushed aside & neglected. Will be top of the list to be ignored for benefits and extra support...it's how we're judged. #CutsWillKill
Attending or presenting at RID 2025? Make sure to tag us (@NCNEDResearch) and the conference hashtag #RID2025 in your social media posts!
#MECFS #pwMECFS #pwME #longCOVID #pwLC #GulfWarIllness #GWI #MEmedia #MEaction #MEawareness #MECFSawareness #longCOVIDawareness
To access the full issue and subscribe to future newsletters, please get in touch with us at [email protected].
#MECFS #MyalgicEncephalomyelitis #pwMECFS #pwME #longCOVID #pwLC #GulfWarIllness #GWI #MEmedia #MEaction #MEawareness #MECFSawareness #longCOVIDawareness
The NCNED is pleased to release the March 2025 edition of our newsletter.
This issue outlines our recent publications and media mentions, and introduces our new PhD students who have recently joined the NCNED team.
#MECFS #pwMECFS #pwME #longCOVID #pwLC #GulfWarIllness #GWI
NCNED Post-Doctoral Research Fellow, Dr Kiran Thapaliya, was recently invited to present at the Victorian Post Acute Covid-19 Sequelae Researchers meeting.
#MECFS #MyalgicEncephalomyelitis #pwMECFS #pwME #longCOVID #pwLC #MEaction #MEawareness #MECFSawareness #longCOVIDawareness
These findings provide further evidence validating the real and physically disabling nature of #LongCOVID and #MECFS.
This reiterates the need for access to multidisciplinary care and support services for all #pwLC and #pwMECFS to manage these debilitating conditions.
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