s4me, 
Discover #MECFS, #LongCovid and related news, advocacy and research from w/c 6th May in our News in Brief post.
Find summaries and further reading links for:
News, advocacy and articles
Research news
Crowdfunding
Coming events
Researchhttps://www.s4me.info/threads/news-in-brief-may-2024.38393/#post-531761
tomkindlon, 
antdesros, 
@mecfs
This is an entirely English-translated version of the first element of the ME awareness campaign made by CMGouin and AQEM, the ME association of Quebec.
You know Olympics and Paralympics, but do you know there are also PwMElympics.
Decathlon: working outside home
Design and illustration by CMGouin cmgouin.com
aqem.ca
You can find the other elements of the campaign at @cmgouin (though they're not entirely translated)
#MEcfs #May12 #MEAwarenessDay #pwME #OlympicGames #ParalympicGamesPwMEOLYMPICS Severity level of the ME: light (first level) Decathlon: working outside home Duration: 8 hours Level of difficulty : 9/10 Possible side effects: concentration disorders, migraine, pain, post-effort malaise, deterioration of health status with loss of capacity People with myalgic encephalomyelitis (PwME) perform daily exploits
Myalgic encephalomyelitis (ME) is a devastating, chronic and complex disease that hinders all aspects of life. ME affects children, adolescents and adults of all ages and backgrounds. Yet people with myalgic encephalomyelitis (PwME) perform daily exploits. Design and illustration: CMGouin.com Production : AQEM.ca
wolfsbruder, 
#mecfs #fibromyalgia #CFS #PEM #POTS
<rant>
So I need to make more space and lose more of my own living space to move the AC so that the temp differential doesn't kill the TV that I can not afford to replace.
I needed to get spoons to get up and do this, as I am bed-bound.
My 11 yro is angry that I am not doing what he wants, and would not let me do what I needed to get spoons, he stole my spons.
And now he is livid at me, because I have less spoons than I started the day with, I can't do now, hell I can't even eat now.
And he is screaming at me blaming me for not doing what needed to be done so he could get what he wanted in the first place.
I am so exhausted and overheating with my meds; if I overheat, bad things happen.
And he just doesn't get it.
As far as he is concerned, it's all my fault that his day and plans, which he never shared, to begin with, are ruined.
</rant>
ahimsa_pdx, 
@wolfsbruder ]sorry this happened, it sounds so exhausting 😔
sending you some love ❤️
ahimsa_pdx, As we approach May 12, ME/CFS International Awareness Day, it's important to remember those with severe ME.
Many of them are so sick that they are on social media either very rarely or not at all 😢
This video from Anil van der Zee, The Prison of ME, explains the agony of severe ME:
https://www.youtube.com/watch?v=yLRateIQdzc
About 12 minutes. Subtitles in multiple languages.
#SevereME #MEcfs #PwME #MyalgicEncephalomyelitis #ChronicIllness #MillionsMissing
ahimsa_pdx, I forgot to tag @mecfs - Oops!
I think editing in a group tag does not work (post is not boosted).
So here's that video link again:
https://www.youtube.com/watch?v=yLRateIQdzc
Please read the rest of the thread for more info - thanks ❤️
ahimsa_pdx, (edited ) I realized that once again I completely forgot to spell out the abbreviations ME and ME/CFS.
So, for folks who have never heard of this illness, or who may mistakenly know it as "chronic fatigue" (which is a symptom of many illnesses and is not the same as an ME or ME/CFS diagnosis), here's a link from the #MEAction website:
"What is ME?"
sbamueller, German 
Eine der bewegendsten Kundgebendungen auf denen ich bisher war, fand heute in #Freiburg auf dem Platz der alten Synagoge statt: Angehörige und selbst an #MECFS Erkrankte demonstrierten für:
💙die Anerknnung ihrer #Krankheit
Mehr Geld für Forschung im Bereich der Myalgische Enzephalomyelitis/Chronisches
Fatigue-Syndrom
💙Bessere Versorgung.
💙Rund 500.000 Menschen seien daran erkrankt.
💙Eine Mutter berichtet wie ihr das Münchhausen by Proxy Syndrom unterstellt wurde
melsdung, German 
"Unser Kollege Tim Braune erkrankte nach einer Corona-Infektion an Long-Covid und an ME/CFS. Nun ist er Rentner statt Chefreporter – mit 49 Jahren."
Die Überschrift sagt dann auch schon alles über das Leid, das diese Erkrankung mit sich bringt. 😔
(Fußnote: Leider kann ich nicht absehen, ob der Artikel für alle lesbar ist oder nicht. Eventuell also Paywall.)
shroombab, German 
Ärztinnen, Physiotherapeutinnen, Psychotherapeutinnen, Menschen, die mit #LongCovid und #MECFS Patientinnen zu tun haben: Nächste Woche gibt es eine kostenlose zweitägige Konferenz mit den Top-Spezialist*innen für dieses Krankheitsbild. Es werden auch Fortbildungspunkte anerkannt. Vielleicht mögt ihr ja teilnehmen, oder es weitersagen!
https://unitetofight2024.world/
ahimsa_pdx, May 3rd presentation by Todd Davenport (about 1 1/2 hours) on MECFS & Long Covid:
"Post-Exertional Neuroimmune Exhaustion as a Bioenergetic Condition"
https://www.youtube.com/watch?v=vuoVAP1CC1Y&t=720s
(link skips part of intro)
I've not been able to watch this myself yet but wanted to pass it on.
ahimsa_pdx, I've attached a screenshot showing the session outline for this talk.
EdibleFuchsia, 
@ahimsa_pdx @tomkindlon @mecfs @longcovid thanks for the share looks informative
lia_pas, 
I wrote a blog post on all the ways I'm participating in
Opera Mariposa's #MECFS benefit this year for #MEAwarenessMonth. There is art, music, and prizes to be won!
ahimsa_pdx, I've joined the "Teach ME, Treat ME" campaign from #MEAction
We're asking for ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) to be taught in medical schools and via continuing education (CME)
⭐️ And you can help! ⭐️
Please share this CME with your healthcare providers:
https://millionsmissing.meaction.net/treatme/
Need help crafting an email? Here's a template:
https://docs.google.com/document/d/15jJZ3-eHQq0pVsshfK-E0so2ucvrBWAzK8en82Xfnfo/edit
Thanks ❤️
#MEcfs #PwME #MedEd #LongCovid #TeachMETreatME #MillionsMissing
tomkindlon, New:
Sex and disease severity-based analysis of steroid hormones in ME/CFSFree full text:
https://link.springer.com/article/10.1007/s40618-024-02334-1#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
AndrewGiffordphotography, 
Summer is disgusting and should be banned!
Related, ME/CFS has made me heat sensitive, so sharing this list of house cooling tips in case it helps you similarly.
https://andrewgiffordphotography.substack.com/p/keeping-the-house-cool-as-a-heat
ahimsa_pdx, This short video (about a minute) from #MEAction asks people with ME/CFS, "How long did it take you go get diagnosed?"
(ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome)
https://www.youtube.com/watch?v=tnzz2QwwaMs
I'm "lucky" because it only took me 5 years to get a diagnosis vs. an average of over 8 years (from the 417 responses they got).
What's your answer? 🤔
1/2
ContraindiKate, 
@ahimsa_pdx 22 years.
ahimsa_pdx, You don't have to be an ME/CFS or Long Covid patient to help us improve medical education.
Join #MEAction's "Teach ME, Treat ME" campaign. Contact your doctor to tell them about the Mayo Clinic CME:
https://millionsmissing.meaction.net/treatme/
Learn more at https://millionsmissing.org
2/2
lia_pas, An exclusive mix of The Hum is now live on Opera Mariposa’s YouTube channel! This is part of their benefit and awareness campaign for #MECFS. #MEAwarenessMonth https://youtu.be/TwimUTiW4qE?si=jrH-3mbZPbek7Eb3
ahimsa_pdx, This amazing embroidered piece (by @lia_pas) is being showcased by Opera Mariposa for this year's "Benefit & Awareness Month"
From their website:
"Until June 1, 2024, you can enter to win art postcards and a book featuring Lia’s exquisite creations – all in support of the ME | FM Society of BC!"
(ME = Myalgic Encephalomyelitis, FM = Fibromyalgia)
https://operamariposa.com/art-showcase/lia-pas/she-breathed/
lia_pas, @ahimsa_pdx @mecfs Thank you for posting this!
ChronicIllnessHumor, 
ahimsa_pdx, Only a few days left until May 12, World ME Day!
My advocacy actions may be small, but I'm trying to help spread the word! 😊
If you want to join in the MEAction group has a list of suggestions in this "Show Up From Home" toolkit (Google doc):
1/n
#MEcfs #LongCovid #MyalgicEncephalomyelitis #MillionsMissing #MEAwareness #WorldMEDay #TeachMETreatME
ahimsa_pdx, I gave this paper to my new primary care doctor recently (old doctor retired) During my medical history he said, "You must be a severe case."
I said, "I'm moderate. Severe cases are bedbound."
Like most doctors he didn't realize how disabling ME/CFS can be.
Doctors need accurate information! And roughly half of Long Covid cases meet the ME/CFS diagnosis so it's even more important now.
Please join the #TeachMeTreatMe campaign ❤️
https://www.meaction.net/2024/05/07/millionsmissing-week-is-here-teachmetreatme-in-action/
3/n
ahimsa_pdx, If you have the financial means (and only if you are not struggling yourself!!) please consider making a donation to #MEAction
Thank you ❤️
https://www.meaction.net/millionsmissing-fundraiser-2024/
4/n
tomkindlon, News from NIH: Registration now open for the NIH ME/CFS Webinar on May 28
Links in image:
https://nih.zoomgov.com/webinar/register/WN_X9UFe5JRT5uJRg16YR3Wgg#/
https://support.zoom.com/hc/en/article?id=zm_kb&sysparm_article=KB0060564
https://www.nih.gov/mecfs/events#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
ahimsa_pdx, From #MEAction:
"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."
https://www.meaction.net/2024/05/07/millionsmissing-week-is-here-teachmetreatme-in-action/
See link for upcoming events.
1/3
ahimsa_pdx, This toolkit from #MEAction lists all the different "Show Up From Home" actions that you can do:
And here's a link for anyone reading this who wonders, "What is ME/CFS?"
Roughly half of Long Covid patients meet the ME/CFS diagnostic criteria.
https://www.meaction.net/learn/what-is-me/
3/3
#MEcfs #LongCovid #MillionsMissing #WorldMEDay #MEAwareness #MEAwarenessDay
ahimsa_pdx, Here's a bonus post for this thread because I wanted to post this screenshot with a selfie of Jaime Seltzer! 😁💪
lia_pas, 'she breathed' (2018) 🫁
For #BAMonth2024, Opera Mariposa is showcasing this embroidery by me, a multidisciplinary artist with #MECFS. Check it out with exclusive insights and enter to win 'she breathed' art postcards til June 1! #SciArt #MastodonArt https://operamariposa.com/art-showcase/lia-pas/she-breathed/
ahimsa_pdx, (edited ) @lia_pas That is such a beautiful piece! 😍
It took me a while to figure out that BA Month stands for "Benefit & Awareness Month" so I'm sharing this link with more info.
https://operamariposa.com/benefit-awareness/#calendar
Opera Mariposa is helping to raise money for the ME | FM Society of BC (British Columbia).
#MEcfs #PwME #Fibromyalgia #LongCovid #NEISvoid #SciArt #Embroidery
lia_pas, @ahimsa_pdx Thank you! And thanks for addding the additional info. I’ve had a lot going on this week so I’m mostly copying and pasting stuff.
justyourluck, 
Interesting read!
"And they restored dysregulated immune balance! (In mice)"
#Covid #Dysregulation #ImmuneSystem #MECFS #AutoImmune #VagusNerve
Article:
https://www.donotpanic.news/p/scientists-just-made-a-stunning-biologicalThe Study:
https://www.nature.com/articles/s41586-024-07469-y
tomkindlon, The prestigious Centers for Disease Control and Prevention (CDC) in the US have released their ME/CFS International Awareness Day (May 12) page for 2024
https://www.cdc.gov/me-cfs/resources/awarenessday.html
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
martinruecker, German 
Versorgungslage bei #MECFS: lt. Umfrage unter 11.000 Betroffenen aus 44 europäischen Ländern ist sie überall mangelhaft, aber mit großen Unterschieden, berichtet DG ME/CFS (Limitationen: siehe Link) https://www.mecfs.de/ergebnisse-einer-paneuropaeischen-umfrage-zu-me-cfs/
riffreporter, German 
Wenn sich #MECFS- oder #LongCovid-Erkrankte das Leben nehmen, ist das bisher ein Tabuthema. Doch Studien zeigen eine erhöhte Suizidrate unter #postviral Erkrankten. Ein Grund ist ihre Stigmatisierung. Die Konferenz #UniteToFight2024 soll Hoffnung machen: @martinruecker https://www.riffreporter.de/de/wissen/suizidrisiko-sterbehilfe-long-covid-mecfs-stigmatisierung