#solveme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #solveme, aggregated by home.social.
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Today is Severe ME Day (August 8)
Here's a video posted by Solve ME last year:
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Hollis Mickey shares her personal experience with pacing and Severe M.E. -- including some of the less obvious types of exertion to be considered when pacing."
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"Deadline: July 13.
You don't need to be an expert, just honest and in this case, not hyperbolic.
Please share. Most people have no idea this is happening but it will impact so many of us."
5/5
#USPol #MEcfs #Science #Research #SolveME #LongCovid #ProtectScience
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🚨 Action item from Solve ME 🚨
"Two things you can do right now from home:
1. Call & email Congress:
https://solvecfs.quorum.us/campaign/164430/
2. Submit a public comment (10 min, we wrote a guide):
https://solvecfs.org/how-to-submit-a-public-comment-on-the-proposed-federal-grant-rule/"
4/5
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"Your comment matters. OMB is legally required to review specific objections, and they released this rule without calculating its real-world costs. Your story becomes part of the official record."
3/5
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"The rule would also require political appointees to approve every research grant, making expert scientific peer review 'advisory' only.
And it would eliminate the small pilot grants that specialized labs and patient registries depend on."
2/5
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Thread with a message from Solve ME:
"A proposed federal rule could let the government cancel active ME/CFS research mid-study when political priorities change.
The public comment window closes July 13.
Here's what you can do."
1/5
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🚨 Tomorrow, Wed, June 10
2 pm Eastern / 11 am PacificFree webinar from Solve ME on Sequence ME & Long Covid research study
"The Search for ME/CFS and Long Covid Biomarkers and Subtypes"
More details here:
https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/Registration link:
(shows time in your time zone)
https://us02web.zoom.us/webinar/register/WN_nEjvCzlPQBOMFrr5f5ULuw#/registration#MEcfs #LongCovid #PostCovid #CovidIsNotOver #DecodeME #SequenceME #SolveME
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Another ME/CFS research & advocacy group is Solve M.E.
They hold Advocacy Week every year, meeting with government representatives to lobby for legislation that will help ME/CFS and Long Covid (research funding and other asks).
They also run the Ramsay Research Grant Program - since 2016, 37 studies have been supported by Ramsay Grants.
https://solvecfs.org/research/ramsay-research-grants/
14/n
#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay #MedMastodon #SolveME
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@mecfs
Want to learn more about ME/CFS? (myalgic encephalomyelitis / chronic fatigue syndrome)Here are a few links.
From #MEAction:
https://www.meaction.net/what-is-me
From Solve ME:
https://solvecfs.org/me-cfs-long-covid/about-the-disease/
From the CDC:
https://www.cdc.gov/me-cfs/about/index.html
Fact sheet from Science for ME forum:
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527
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🚨 Reminder: ME/CFS Advocacy Week Starts Monday (March 23-27)
This is a joint campaign by #MEAction and Solve ME to work with the systems that shape what US medical providers learn about ME/CFS and Long Covid.
Volunteers still needed! Register here (Google form):
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewformParticipant toolkit:
https://www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view?utm_content=DAHDA3p0_NY -
In case it was not clear, they need volunteers - please sign up if you can!
I just signed up myself.
From the sign-up form:
"Throughout the week, participants will receive clear daily action steps, templates, and guidance. You may participate at your own pace, and all live sessions will be recorded.
We’re grateful you’re joining us. If you have any questions please email us at [email protected] "
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
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Hello to all the ME/CFS and Long Covid activists out there 👋
Solve ME and #MEAction are joining forces to work on a medical education initiative for this year's Advocacy Week, March 23-27.
More details:
https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/
Registration link (Google docs form):
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
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"New Catalyst Awards to Accelerate ME/CFS and Long Covid Breakthroughs"
https://solvecfs.org/february-2026-catalyst-awards/
“Solve M.E. is committed to putting patients at the center of scientific progress. These Catalyst Award-winning studies not only push the boundaries of ME/CFS research but also ensure that patient voices guide every step. We believe these projects will bring us closer to answers, hope, and better lives for people affected by ME/CFS and Long Covid."
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@IrishMECFSAssociation Wow, many thanks to the Irish ME/CFS Association for this donation! ❤️
I'm not staff, just a volunteer, but I think Solve ME does good work. For example, their yearly advocacy week sets up hundreds of meetings with US senators and US representatives to lobby for legislation that will help ME/CFS and Long Covid patients.
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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
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The Summer 2025 edition of Solve ME's journal, The Chronicle, is now available.
Summary here:
https://solvecfs.org/read-the-summer-2025-edition-of-the-chronicle/
Direct link to the summer 2025 issue (PDF) here:
https://solvecfs.org/wp-content/uploads/2025/07/Summer2025ChronicleFinal.pdf
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"Power, Progress, and Patient-Led Change"
An overiew of Advocacy Week 2025 from Solve ME:
https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/
"In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices."
1/n
#USPol #MEcfs #LongCovid #POTS #Congress #Senate #Advocacy #SolveME
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New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
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Another ME/CFS research & advocacy group is Solve M.E.
They hold Advocacy Week yearly where volunteers meet with Congress
Advocacy Week 2025 is June 23 to 27
🚨Today, May 12, is the last day to sign up!
All activities are online this year, no experience is necessary, there'll be training sessions.
I signed up yesterday - wanna join me?
https://solvecfs.org/advocacy/advocacy-week/advocacyweek2025/
10/n
#MEcfs #LongCovid #MillionsMissing #Advocacy #Activism #SaveOurScience #SolveME
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"Long COVID activists fought Trump team’s research cuts and won ― for now"
https://www.nature.com/articles/d41586-025-00995-3
"A 2024 study estimated that 11 million people in the United States currently have long COVID, and that the condition costs the country more than $152.6 billion in lost work hours each year."
#COVID19 #LongCovid #MEcfs #PostCovid #Research #SolveME #Resist
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@maggiejk
Here's a link to an article about this study on the Solve ME website:And here's a link to the Science for ME forum where it is being discussed:
It's beyond my ability to understand or analyze this kind of research, but I'm happy to provide pointers to discussion! 😁
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Solve ME has published the summer 2024 Edition of The Chronicle
https://solvecfs.org/read-the-summer-2024-edition-of-the-chronicle/
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Webinar from Solve ME:
"Symptom Management and Patient Empowerment Through The Long Covid Wearable Study"
Monday, April 29
1 PM Pacific / 4 PM EasternThis webinar will discuss using wearables to implement pacing and a planned one-year study (Long Covid Wearable Study by Scripps Research) to gather data hoping it can help patients manage symptoms. Presenters will explain how patients can join this study.
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It should be noted, esp by those involved in this push by #SolveME to establish a new #NIH office, that #MCAS, #POTS, and ESPECIALLY #EhlersDanlos, are NOT necessarily #infection associated. I have very real concerns for what this push to lump them under the “infection associated #ChronicIllness” umbrella could mean for #patients who have these conditions with no known #infectious cause (especially #EDS which is genetic…). Also note MS was excluded because of known #biomarkers —EDS has these 😒
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How patient-led research could speed up medical innovation, with examples from #LongCovid and #mecfs, including #SolveME #PLRC and #MEAction
Of course they mention the speed of patient-led research, but I also love to see the recognition that patients help design better experiments and especially better controls. It's hard to control for dynamic conditions and lack of diagnostic lab tests, but patients have expertise.
https://www.sciencenews.org/article/patient-led-research-health-medicine
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From Solve M.E.
"A #GlobalVoiceForME on World ME Day 2024"
https://solvecfs.org/solve-a-globalvoiceforme-on-world-me-day-2024/
"As we approach World ME Day on May 12th, 2024, Solve joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME)""In the coming months, Solve and the World ME Alliance will be announcing actions you can take to create change"
Until then "spread the word" & "educate yourself" about ME!
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Reminder:
"Solve Together Basics: A Walkthrough from the Participant's Perspective"
Wednesday, Oct. 4
11 am - noon Pacifichttps://solvecfs.org/event/39221/
"Join Solve Senior Director of Research Leslie E. Phillips, PhD for a walkthrough of our new patient-centered data platform, Solve Together!
In this webinar, we’ll share information about joining the platform, share tips for maximizing built-in tools for participants, and answer your questions."
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From Solve M.E.
"Solve Together Basics: A Walkthrough from the Participant's Perspective"
Wednesday, October 4
11 am - noon Pacifichttps://solvecfs.org/event/39221/
"Join Solve Senior Director of Research Leslie E. Phillips, PhD for a walkthrough of our new patient-centered data platform, Solve Together!
In this webinar, we’ll share information about joining the platform, share tips for maximizing built-in tools for participants, and answer your questions."
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Posted by Solve ME:
"Join Solve ME, Long COVID Alliance, and Marked By COVID on 9/26 for an interactive webinar on critical policy initiatives for COVID survivors, grievers, and people w/ Long COVID and associated conditions."
Register here:
https://markedbycovid.zoom.us/webinar/register/3316947849054/WN_iag2t6nrScidITFYjJrwCA#/registration -
Webinar from Solve M.E. :
"The Future of Symptom Tracking: Exploring STAT Health’s Revolutionary In-Ear Device That Measures Blood Flow to Head"
Tuesday, July 25, 2 - 3 pm PDT
#Dysautonomia #POTS #OrthostaticIntolerance #MEcfs #LongCovid #Wearable #SolveME