💙 It's May 12th, International ME/CFS Awareness Day 💙
My ME/CFS onset was in Jan 1990
🚨 Many recent ME/CFS cases have been triggered by COVID 🚨
In this thread I plan to post about 3 main things:
1. My ME/CFS story (briefly)
2. Helpful resources for patients and clinicians
3. Advocacy options for patients & allies (friends/family) - mostly US based
1/n
#MEcfs #LongCovid #PostCovid #Disability #DisabilitySOS #CovidIsNotOver #MillionsMissing #MEAwareness #WorldMEDay
My story, in brief:
I caught an unknown virus in Dec 1989. I thought I'd recovered but then started getting new symptoms in Jan 1990. In March I went on medical leave.
Over the next 5 years I went to dozens of doctors but got no diagnosis until 1995. I tried to keep working but finally got too sick to work in 2000.
Pushing myself all those years led to a permanent worsening of my condition.
Not a good idea! 😔
2/n
If you learn nothing else from my thread today, please remember this:
Exercise is NOT recommended for people with ME/CFS!
Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.
This video has more info:
https://www.youtube.com/watch?v=wxSwYUennBA
3/n
#MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay
While most ME/CFS patients do have abnormal results from one or more tests, there's no single test (yet) which can reliably diagnose this illness.
Two links on ME/CFS diagnosis -
1. Concise Review for Clinicians from Mayo Proceedings:
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
2. "ME/CFS Basics" from the CDC:
https://www.cdc.gov/me-cfs/about/index.html
4/n
#MEcfs #MedEd #MillionsMissing #MEAwareness #MEAwarenessDay #WorldMEDay
What does #MillionsMissing mean?
Even mild cases of ME/CFS cause significant loss. People with ME are missing from jobs (part time work), social activities, and exercise.
Moderate cases cause more loss so they may rarely leave the house.
People with severe ME are stuck in bed. Some use eye shades & ear plugs to reduce sensory input.
As ME/CFS gets worse a patient's world shrinks.
Attached comic is by Kornelia Paulsen.
5/n
Okay, taking a break for a while!
I'm resting to avoid PEM (post-exertional malaise) also called PESE (post-exertional symptom exacerbation)
Speaking of resting here's a link to the #StopRestPace page by #MEAction which was created a few years back to explain the importance of pacing and resting to new Long Covid patients:
https://www.meaction.net/stoprestpace/
It has links to a few different pacing and management guides.
6/n
I'm back! 😁
Next I'll share resources for people who have ME/CFS.
Because of an overlap in symptoms these resources may also help folks who have Long Covid, or who have some kind of orthostatic intolerance like POTS (Postural Orthostatic Tachycardia Syndrome) or NMH (Neurally Mediated Hypotension) - or both!
An umbrella term often used is IACC, Infection Associated Chronic Conditions.
7/n
#MEcfs #LongCovid #POTS #MillionsMissing #Dysautonomia #MEAwareness #WorldMEDay
Some ME/CFS resources (groups, documents, videos) in no particular order:
I mentioned the #MEAction group earlier in this thread (see #StopRestPace post)
Their website has lots of good info!
Their events calendar includes support groups, advocacy meetings, and support for artists and writers:
https://www.meactions.org/event-list
Recent youtube posts:
https://www.youtube.com/@MEActNet/shorts
8/n
#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay
We’re Igniting a Global Revolution in ME Care Our movement fights for recognition, research and clinical education so that, one day, all people with myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME, or ME/CFS), and Long COVID will have access to compassionate and effective care. We are advocating for our communities at every government table and protesting on … Home Read More »
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
Next organization on my list is the Bateman Horne Center
https://batemanhornecenter.org/
They recently posted a Clinical Care Guide for ME/CFS & Long Covid
They also post helpful videos, like these 2 on Orthostatic Intolerance - I share them a lot!
What is Orthostatic Intolerance? Part 1: Diagnostic Workup
https://www.youtube.com/watch?v=X3Ym8rnYk_4
Part 2: Management
https://www.youtube.com/watch?v=GIkS4w3tIg8
11/n
#MEcfs #PwME #LongCovid #POTS #Dysautonomia #MillionsMissing #BatemanHorne
Next up is Open Medicine Foundation, a group that does research to
"diagnose, treat, and prevent chronic, complex diseases such as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Post-COVID Syndrome, Post-Treatment Lyme Disease Syndrome (PTLDS), and Fibromyalgia"
Main website:
Here's their resources page:
https://www.omf.ngo/resource-center/
12/n
#MEcfs #PwME #LongCovid #MillionsMissing #WorldMEDay #MEAwarenessDay #OMF
Want to discuss the science of ME/CFS with patients, doctors, researchers, or anyone else who's interested?
There's a moderated forum called Science for ME:
Full disclosure, I'm a forum member and volunteer (but not a moderator - too hard for me!)
In addition to the more serious parts of the forum there are also subforums where patients can chat about stilly stuff 🤪
13/n
#MEcfs #PwME #LongCovid #MillionsMissing #MEAwarenessDay #Science4ME
I'm about to end this long thread with calls to action (all US based)
Many go far beyond helping ME/CFS and Long Covid patients. Disabled folks have to stick together!
#MEAction has a page on saving Medicaid. Tasks are listed by energy (low to high) with sample scripts for email / phone calls to your congress member. There are tips on how to schedule an in-person visit
https://www.meactions.org/medicaid
14/n
#USPol #Advocacy #Medicaid #SaveMedicaid #MEAwarenessDay #MillionsMissing
I thought I had a longer list of actions!
The only other one I can find now is this, a call by #MEAction to sign their open letter to the NIH demanding they fund ME/CFS Resesarch Roadmap:
https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form
15/n
#USpol #MEcfs #LongCovid #MillionsMissing #NIH #Research #FundMERoadmap
Okay, I think that's it! If you've made it all the way to the end of my thread, thanks so much for reading! 😁
I may be done posting but I'll continue to look for and boost other posts about World ME Day / ME Awareness Day / Millions Missing.
I'll end with a story by The Sick Times about the #MEAction Millions Missing protest at the capitol:
16/16
#MEcfs #LongCovid #MillionsMissing #DisabilitySOS #MEAwarenessDay #WorldMEDay
Myalgic encephalomyelitis (ME), Long COVID, and other chronic disease advocates demonstrated outside the Capitol Building in Washington, D.C., this afternoon. Organized by the advocacy group #MEAction, demonstrators demanded that the federal government fund ME research and preserve vital social support systems like Medicaid and telemedicine.
PS. If you want to make a donation to an ME/CFS group (only if you can afford it!) then here are some links:
#MEAction
https://www.meactions.org/millionsmissing-2025-sos-fundraiser
Solve M.E.
https://solvecfs.org/donate
Bateman Horne Center
https://batemanhornecenter.org/donate/
Open Medicine Foundation
https://www.omf.ngo/
#MEcfs #MillionsMissing #WorldMEDay #MEAwarenessDay #Charity
@ImmedicableME
That's good to hear! I've never attended myself.
They have a support group scheduled for tomorrow, Tuesday, May 13.Topic: Tapping Into the Collective Wisdom of the Group.
See link for details:
https://batemanhornecenter.org/event/online-support-group-94/
Looks like they'll be sharing photos, videos, drawings, poems, etc. that were submitted previously.
Sorry to hear about your wife 😢
I'm too sick to work, but can leave the house as long as I'm careful to pace myself, take my meds, avoid standing (orthostatic intolerance), etc.
PEM/PESE can be very hard to describe, even for those of us who have lived with it for years! But it's definitely different from normal post exercise aches. (I used to lift weights, run, etc)
You're right that ME can have different causes other than infection but that's a very common trigger.
@ahimsa_pdx 💔 Have you watched any of Dianna's (aka Physics Girl) videos on YT? Here's one, if not: https://youtube.com/shorts/xALv93I6xLo
ahimsa
Zephyr Leif Renner
Analyst Hyacinth, in the moss
ImmedicableME
Mary Austin VOTED 4 HARRIS!
Steve Moore 