💙 It's May 12th, International ME/CFS Awareness Day 💙
Also called World M.E. Day!
🧵 This thread talks about 4 things:
1. My ME/CFS story (brief)
2. Facts about ME/CFS and Long Covid
3. Helpful resources for patients (and friends/family)
4. Actions you can take to help folks with ME/CFS & Long Covid!
Some will be easy things anyone can do! 👍
Other actions (re: #Medicaid) are for US residents only.
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#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
I'll start by explaining that ME/CFS (name used by most groups in the USA) stands for "myalgic encephalomyelitis / chronic fatigue syndrome"
Here are two links with an overview of ME/CFS
1) "What is ME?" from #MEAction
https://www.meaction.net/what-is-me
2) "Introduction to ME/CFS" from the Science for ME forum
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-596527
Many folks w/ Long Covid have similar symptoms, some meet the ME/CFS diagnostic criteria
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My story:
I caught an unknown virus in Dec 1989. I thought I'd recovered then new symptoms started in Jan. Got worse & took my first medical leave in March 1990.
Went to dozens of doctors. Finally got a diagnosis in 1995. I kept working, taking medical leaves as needed, but finally got too sick to work at all in 2000.
Pushing myself all those years led to a permanent worsening of my condition!
Not a good idea! 😔
3/n
If you learn nothing else from my thread today, please remember this:
🚨 Exercise is NOT recommended for people with ME/CFS!
Any exertion, mental or physical, is not good for people who have post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE)
This includes a significant portion of people with Long Covid.
Video with more info:
https://www.youtube.com/watch?v=wxSwYUennBA
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#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay #PEM #PESE
Symptom severity ranges from mild to very severe. But even so-called "mild" ME/CFS has an enormous impact what a person can do.
With severe ME/CFS the person is mostly housebound or completely bedbound.
Anil van der Zee, a former professional dancer who now has severe ME, made this video:
https://www.youtube.com/watch?v=XhrAhGkrGuQ
Read the YouTube summary for more details
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#MEcfs #PwME #SevereME #MEAwarenessDay #WorldMEDay #MyalgicEncephalomyelitis
Another ME/CFS fact: It can be triggered by COVID infection. Not all Long Covid cases meet ME/CFS diagnosis but many do. For more info see this Bateman Horne Center blog post:
COVID-19 Triggers ME/CFS
https://batemanhornecenter.org/covid-19-triggers-me-cfs/
"… among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times *higher* than pre-pandemic rates."
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#MEcfs #LongCovid #COVID-19 #CovidIsNotOver #MillionsMissing
Another fact: ME/CFS research has been badly underfunded for years!
In a recent study that looked at research funding with respect to disease burden, ME/CFS was "the most underfunded disease, receiving less than 1% of its expected funding"
Article from Solve ME:
"… the NIH must do a better job at funding severely debilitating diseases that disproportionately affect women more than men"
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What does #MillionsMissing mean?
Even mild cases of ME/CFS cause significant loss. So people with ME/CFS are "missing" from work, socializing, exercise, etc.
Moderate cases cause more loss so that people can rarely leave the house.
People with severe cases are in bed, rarely able to intereact with anyone.
As ME/CFS gets worse a person's life shrinks more and more.
The attached comic is by Kornelia Paulsen.
8/n
OK, I'm gonna take a rest break!
I'm trying to avoid PEM (post-exertional malaise), aka PESE (post-exertional symptom exacerbation)
Pacing is hard! It often fails due to some unplanned exertion which can't be avoided. And sometimes adrenaline takes over when I should be resting.
In short, it's easy to do too much and crash. Fact sheet about PEM:
https://www.s4me.info/threads/science-for-me-fact-sheets.43310/#post-606969
I'll be back later today! 😁
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#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
I'm back! 😁
Next I'll share some resources.
I'll start by talking about Orthostatic Intolerance (OI). This is when folks get symptoms when in an upright posture, most often from standing, but also when sitting upright. This condition is common in both ME/CFS and Long Covid.
Sadly, many doctors don't know about OI even though it's an optional diagnostic criteria for ME/CFS.
https://www.cdc.gov/me-cfs/pdfs/toolkit/What-are-MECFS-Symptoms_508.pdf
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#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia
This 2-part video series from the Bateman Horne Center about Orthostatic Intolerance in ME/CFS is very helpful:
"What is Orthostatic Intolerance in ME/CFS?"
Part 1 - Diagnostic Workup
https://www.youtube.com/watch?v=X3Ym8rnYk_4
Part 2 - Management
https://www.youtube.com/watch?v=GIkS4w3tIg8
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#MEcfs #LongCovid #OrthostaticIntolerance #POTS #Dysautonomia #BatemanHorne
Next I'll list some of the ME/CFS groups which have resources for patients and clinicians.
I'll start with the Bateman Horne Center since I just mentioned them. They have online support group meetings twice a month.
They also have regular "Coffee" with a Clinician sessions where they talk about different ME/CFS issues.
Event calendar:
https://batemanhornecenter.org/events/
Home page:
https://batemanhornecenter.org/
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Another ME/CFS group is #MEAction. They've done great advocacy work over the years, including this protest in 2023. They put 300 cots on the lawn at the Washington Monument.
People with ME/CFS or Long Covid sent in pillowcases with personalized messages - you can see some of the pillows in this video.
Video from the event:
https://www.youtube.com/watch?v=FULqhB--k7k
Website:
https://storyofmillionsmissing.org/dc-protest/
This event got good press coverage.
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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/
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#MEcfs #LongCovid #MEAwarenessDay #WorldMEDay #MedMastodon #SolveME
Want to discuss the science of ME/CFS & Long Covid with patients, doctors, researchers, other interested folks?
There's a moderated forum called Science for ME:
https://www.s4me.info/whats-new/
Full disclosure, I'm a forum member and one of the volunteers who do the "News in Brief" summary. It's posted weekly on Mastodon and Bluesky.
The forum also has subforums where patients can chat or share funny/silly stuff. Come join us! 😁
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I'm taking another break while I gather up and organize the final section of this thread, actions you can take to help folks with ME/CFS & Long Covid.
Stay tuned - I will be back a bit later to finish the thread!
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I'm back to list ways you can help folks with ME/CFS & Long Covid.
USA resident? You can add your signature to #MEAction's letter to the HHS secretary!
Congress has mandated that Medicaid recipients must work 80 hours a month unless they can prove they're “medically frail." This letter urges HHS to recognize people with ME/CFS & Long COVID as “medically frail" to protect their Medicaid access.
https://www.meaction.net/savemedicaid
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If you're a US resident you can add your story to #MEAction’s story bank.
They want stories from patients, caregivers, friends & family, healthcare providers, disability advocates - anyone who wants to contribute!
They particularly need stories from folks who rely on Medicaid.
You can remain anonymous if you like. Your story can include photos or video (optional)
Details:
https://airtable.com/app4hQ0Pkj285JqK1/pag3Ar4l6GfUGtxP1/form
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Another way to help is to donate to the "Sequence ME & Long Covid" research project:
Action for M.E. just announced yesterday that this project got more funding! Read more about the project here:
https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project/
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#MEcfs #LongCovid #MedMastodon #SequenceME #Research #ActionForME
More details about the Sequence ME and Long Covid research are in this government press release:
"Thousands of ME/CFS patients to benefit from first genomics study"
https://www.gov.uk/government/news/thousands-of-mecfs-patients-to-benefit-from-first-genomics-study
"…the study will enable the SequenceME programme to sequence the genomes of up to 6,000 ME/CFS patients, generating a world-first high-resolution genetic map of the illness."
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#MEcfs #LongCovid #SequenceME #DecodeME #Genomics #MedMastodon
How about a tea party? Blue Sunday is May 17!
https://the-slow-lane.com/blue-sunday-2026/
This event can be as simple as asking your family and friends to text you a photo of their daily cup of tea. Or you can dress in blue, take photos, and post them online. Attached image has more ideas.
The fundraiser part is donating the cost of a cafe visit to an ME/CFS charity, here are some suggested charities:
https://the-slow-lane.com/donation-pages/
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There's an online Blue Sunday event (via Zoom) that's hosted by #MEAction NC (North Carolina)
Sunday, May 17, 2026
1:00 pm – 2:30 pm EDT
Everyone's invited no matter where you live!
More details, including a registration link, can be found here:
https://www.meaction.net/event-details/blue-sunday-tea-party
It's too late to order a box of baked goods but not too late to register!
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#MEcfs #Fundraiser #BlueSunday #BlueSunday2026 #TeaPartyForME2026
Okay, that's all for today! If you made it all the way here, thanks so for reading! ❤️
Please share this information with others! Boost this thread, share links with friends & family, etc.
I'll end with a quote from Naomi Whittingham:
"No matter how isolated you might be, you are inextricably connected to the rest of humanity in ways you can’t fully imagine."
Source = https://alifehidden.com/2026/05/10/not-forgotten/
23/23
#MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay
@tiggy
Thank you! ❤️
I believe Sequence ME research study is still in the funding stage. The link I posted is for monetary donations.
The initial DecodeME study finished but the dataset will be available for researchers and they proposed some future work.
Hopefully the new study will benefit from their DNA dataset.
DecodeME aimed to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS). The study will help us understand the disease and ultimately find treatments.
@tiggy Yes, it looks promising! For some reason I was confused about your "join in" comment.
Anyway, for anyone who wants to read more about what's planned for Sequence ME here's a link to a discussion thread on the Science for ME forum:
Ahimsa
Tiggy