Top Tweets for #ResearchMe
My mum diagnosed with dementia a few months ago,most likely #FTD.
I'm a #pwME.
I have to care for my son who has ME & #LongCovid
My sister has ME
My brother has #epilepsy
We aren't able to give mum the care she needs, due to so much #ChronicIllness
I feel so guilty
#ResearchME
#pwME What do you think? Weโve raised funds internationally before for specific research projects, do you think the community would get behind this investigation? Excellent team in my hometown Melbourne, Australia #ResearchME @DanMissailidis
Small funding ask to test for mitophagy issues & relevant immune issues in primary cells from people with ME/CFS rejected..
This was to pursue a DecodeME lead (FBXL4).
Wondering whether there is interest in small crowdfunded studies to follow up DecodeME? Rly want to test this.
@bhanlon15 @enfermarebelde Not really ๐ง I wish we would see something like that in awards ceremonies
#ResearchLongCovid
#ResearchME
Hat tip to Britt Lower of Severance for this subtle message in her acceptance Emmys speech
#ResearchLongCOVID
#ResearchME
Margot & Dakota making statements on the red carpet this week - and that bold message is to Research Long COVID & ME
#ResearchLongCOVID
#ResearchME
โฐ ME/CFS isn't something you 'get over' quickly.
For many, Severe ME means decades of profound disability, isolation, and lost life opportunities. We need research, recognition, and respect.
#SevereMEDay #SevereME #HiddenButHere #BeTheLight #ResearchME
The Future of Oncology Is Patient-Powered, AI-Assisted, and Deeply Personal... - Anne Bruinvels (@annebruinvels)
@owisebreast
https://t.co/wTkzTR4fl9
#OncoDaily #Oncology #Cancer #Health #Medicine #MedTwitter #MedEd #MedOnc #MedNews #OWise #OncologyFuture #ResearchMe @CancerWorldmag
@CaroleBruce17 "What will help people fulfil their potential?
What gives them a better life?"
Well.....
#FundThePlan
#ResearchME
#FindACure
Without these, #pwME have little to no chance of succeeding in either of these questions!
#MyalgicEncephalimyelitis
@MEActNet @MEActNetUK @MECFSResearch @WorldMEAlliance @MEResearchUK @SmileForME_xx @TraceySpicer @sophiescott2 @EmergeAus @OpenMedF @ThereForME_UK @JohnVsJonVsME @TheCanaryUK @Not_Recovered @LCMEBillboards JOIN RESEARCH ๐งช Researchers globally are helping people with ME every month of the year. Why not look into joining a study during #MEawareness month?
The data-driven legends at @wecrunchme have put together this handy list of opportunities ๐
#ResearchME #MECFS
15/ ๐งต
This week we are highlighting 7 different clinical trials across Long COVID, ME/CFS and POTS that are โจ recruiting participants โจ
These are happening across USA ๐บ๐ธ, UK ๐ฌ๐ง and Australia ๐ฆ๐บ
A visual thread ๐งต
In January, I was lucky to meet in person with my federal member of parliament @Mon4Kooyong. She listened with care & discussed action with strategy and clarity for people with #MECFS in Kooyong. ๐๐๐ #FairGoForME #MyalgicEncephalomyelitis #NotRecovered #ResearchME
ME/CFS research receives far less funding than other chronic illnesses.
Tag your election candidates and ask them about their commitments to help people with #MECFS and #longCOVID.
Remind them you're asking for a #FairGoForME and this will decide your vote! #AusVotes2025
The UK Rose That Grew From The Concrete To Make Hip Hop history Rapping With Legends Over 2 Decades while ya fav rappers was in school taking notes #WiseRap #PaulRafis #HipHop #Rap #IAmHipHop #MC #Rose #Concrete #Jungle #UkHipHop #UkRap #KilburnRaisedNorthWestLondon #ResearchMe
@ThereForME_UK @MEResearchUK @tinakatsaros 3. The wonderful @IrishMECFSAssoc are a long-standing group, with volunteers diligently raising funds for research and support
๐Christmas card sales are one of the biggest contributors to their work.
#pwME #ResearchME #MECFS
Association chairperson, Vera Kindlon, continues to deal with the Christmas card orders as she has been doing for 27 years
https://t.co/mSUmyVtlFl
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
๐ฅ: voting takes a few clicks - 1. scroll to the bottom and select #4 MECFS
2. do the โI am not a robotโ/re captcha
3. click submit button
#pwME #ResearchME #MillionsMissing
https://t.co/gSHipmLK2I
I just donated to Ronald W Davisโ research into ME/CFS. We can set up regular payments, which may be easier for many. Small amounts will add up to make a difference. ๐
https://t.co/ioLR4E7Xxl
#pwME #pwLC #ResearchME
Following on from the success of @U2Fight_World, where are we planning on donating to? Our ยฃs do add up
For research, I think Iโll donate to Ronald W Davis (link below)
For UK assistance to our most vulnerable, I have a DD with @TheChronicColab
For awareness @LCMEBillboards
Important day of action in Canberra today for Australians with #MECFS. We need (effective & substantial) clinical guidelines *urgently* - every excuse & every day of delay is inflicting unnecessary harm #StopTheHarm #StopGET #ResearchME
@davidputrino @Mon4Kooyong @SenatorJordon
Join @EmergeAus as we unite the ME/CFS and Long COVID community to focus on Recommendation 8 of the Long COVID Inquiry 2023. ๐๏ธ 27 March 2024 ๐ 10am-1pm ๐๏ธ Australian Parliament House, Canberra. Led by Ambassador Tracey Spicer AM.
Register at https://t.co/XF8Tf5rSLt
***** Researchers seeking feedback*****
The focus of each webinar was to cover โwhat do we know, what donโt we know, and what do we need to know to accelerate research.โ #MECFS #ResearchME #FundMEresearch #pwME
Working group co-chairs: Dr Bateman & Dr Hanson
Research topics:
โข Nervous System
โข Immune System
โข Metabolism
โข Genomics
โข Chronic Infections
โข Physiology
โข Less Studied Pathologies [e.g. MCAS, connective tissue, gastrointestinal]
โข Circulation
https://t.co/x95k8ad2sp
The excellent webinar series on MECFS research is complete & you can provide feedback on the Research Road Map - What do you think? Whatโs your experience? -
closes this week [USA time]
#pwME #MEadvocacy #MEawarenesshour #ResearchME
REMINDER - DEADLINE MARCH 8th! The NIH ME/CFS Research Roadmap public comment period is open until March 8th. We share the instructions for commenting as well as some background on the research roadmap and where the work is leading in this article: https://t.co/eF2iNIA0gj
#pwME
You know I have an aversion to โfatigueโ scales, and so the new FUNCAP55 (functional capacity) scale being used in upcoming research is great to see!
Specific, helpful, insightful: #PEM #ResearchME
If you get PEM, whatโs your FUNCAP55 score?
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