Link to listen to 9-minute segment today on a national radio station, Newstalk FM, discussing the DecodeME study with subsequent discussion on Covid
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
#pwme
48 innlegg20 deltakere0 innlegg i dag
Migraine Triggers:
– Eating
– Sitting or Standing
– Sleeping
State of Alaska Recognizes ME Awareness Day
https://solvecfs.org/state-of-alaska-recognizes-me-awareness-day/
Piece by Solve ME/CFS Initiative
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Solve ME/CFS Initiative · State of Alaska Recognizes ME Awareness Day - Solve ME/CFS InitiativeSenate Bill 60, sponsored by Senator Löki Tobin (D-Anchorage), which officially became law without the Governor’s signature, "designates May 12 in Alaska as a day to raise awareness about the disease, the urgent need for research and improved medical care, and to support the many individuals and families impacted by ME/CFS."
Summaries of presentations made at the recent Patient-Led Research Collaboration (PLRC) conference
https://solvecfs.org/plrf-event-highlights-promising-me-cfs-long-covid-biomedical-research-projects/
Prepared by Solve ME/CFS Initiative
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
US research involving Ron Davis:
Microfluidic assessment of PO2-regulated RBC capillary velocity in ME/CFS
https://www.sciencedirect.com/science/article/pii/S3050598425000198
"These findings highlight previously unrecognized roles of RBCs in the pathophysiology of ME/CFS & suggest a potential RBC-based test for ME/CFS diagnosis"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Fortsettelse av samtale
Need an overview before the webinar? Here are 2 links from the DecodeME website:
1. Initial DecodeME DNA Results:
https://www.decodeme.org.uk/initial-dna-results/
2. X marks the spot where ME/CFS biology can be discovered:
DecodeME · Initial DecodeME DNA Results - DecodeME06 August 2025 The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share. Main findings from our analysis Your genes contribute to your chances of developing ME/CFS. People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to…
DecodeME Genetic Results Webinar tomorrow, Thursday, Aug 14, 2:30 PM BST
Register here:
https://us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration
(registration link will show time in your time zone)
Note from DecodeME:
"There are limited spots to join on Zoom (registering does not guarantee a spot).
Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time."
Experiences of pacing to reduce symptoms among adults living with Long COVID in Canada, Ireland, the United Kingdom and the United States
Free fulltext:
https://link.springer.com/article/10.1186/s12982-025-00822-0
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
US press release:
Researchers identify key biomarkers for chronic fatigue syndrome
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Here is an AI summary of a sympathetic article in the German newspaper Der Spiegel
(copied from here: https://www.s4me.info/threads/news-from-germany.11006/post-632963 )
Link to article in German
https://www.spiegel.de/gesundheit/diagnose/me-cfs-eine-psychotherapeutin-erklaert-weshalb-die-krankheit-so-oft-verkannt-wird-a-a65d8a5f-c658-4a12-958c-99ed59fa0583
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs_de
From Canada:
Circulating FGF-21 as a Disease-Modifying Factor Associated with Distinct Symptoms and Cognitive Profiles in Myalgic Encephalomyelitis and Fibromyalgia
https://www.mdpi.com/1422-0067/26/16/7670
Screenshot from latest Science for ME weekly update
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Sunday Times As my daughter died of ME, the state met in secret to blame me
Screenshot from latest Science for ME weekly update
#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Som svar til Irish ME/CFS Association
Hope to see a few of you at this 
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Dundalk
@IrishMECFSAssociation @mecfs
Informal ME/CFS social meet-up in Dundalk hosted by Tom Kindlon @tomkindlon on Tuesday, August 19
Hopefully we’ll see some of you there.
https://irishmecfs.org/blog/dundalk-informal-mecfs-social-meet-up-on-tuesday-august-19-hosted-by-tom-kindlon
Donation links to support the researchers behind #DecodeME
Links:
https://www.actionforme.org.uk/research-campaigns/our-research-work/genetics-centre-of-excellence/
https://www.actionforme.org.uk/sequenceme-first-of-a-kind-genetic-study/
https://www.actionforme.org.uk/research-campaigns/our-research-work/decodeme-donate/
https://donate.ed.ac.uk/support/ME-CFSResearch
Screenshot from latest Science for ME weekly update
Prof David Systrom presented findings from an invasive cardiopulmonary exercise test (iCPET) in ME/CFS and Long COVID.
https://www.youtube.com/watch?v=YIq1QMCpWHo
Screenshot from AMMES email newsletter
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
"Lack of ME research because of ‘medical misogyny’, says top scientist"
https://www.thetimes.com/uk/scotland/article/chris-ponting-misogyny-me-research-c09hp0hfg
"Professor Chris Ponting, who led a groundbreaking study into the disease (DecodeME) says it is 'highly stigmatised and incredibly female-biased'"
"…clinicians and scientists should be asking why his work was not done 15 years ago"
"X marks the spot where ME/CFS biology can be discovered"
https://www.decodeme.org.uk/x-marks-the-spot/
A blog post on the science behind DecodeME
"Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world's biggest ME/CFS study – and its results are striking.
18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eight genetic signals [which] indicate that immune and neurological processes play a significant role in ME/CFS."
DecodeME · X marks the spot where ME/CFS biology can be discovered - DecodeME06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate that immune and neurological processes play a significant role in…
Interested in learning more about the results from Decode ME the world's largest ME/CFS study?
There's a free webinar on Thur, Aug. 14, at 10:30 AM Eastern Time.
Registration link = https://us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration
Questions for presenters can be posted by forum members on this Science for ME forum thread (no guarantee they will be answered but they will be passed on to the team):
ZoomWelcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.Welcome! You are invited to join a webinar: DecodeME Initial Results Webinar . After registering, you will receive a confirmation email about joining the webinar.
Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
