MonzaMayhem

Why I Can’t Just Meet You for Dinner The Reality of Post-Exertional Malaise

Why I Can’t Just Meet You for Dinner

open.substack.com/pub/centerle...

No Evidence Supports Using Graded Exercise for ME/CFS Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’

For those who still don’t know, Graded Exercise Therapy is not recommended and can be harmful for people with ME/CFS.

www.medscape.com/viewarticle/...

I’m surprised more blue state governors aren’t going, or maybe they are, but we aren’t hearing about it.

This clip from 2018 perfectly captures just how passionate @davetuller1.bsky.social is and how shocked he was by the way the PACE trial was defended.

His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work

My Official Statement. Thank You for your attention to this matter.

We are excited and ready for day 2 of @icancmeresearch.bsky.social!

#MEAction’s Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is speaking soon!

#ICanCME2025 #pwME #MECFS

Graphic about two upcoming Caregiving webinars with MEAction. Photo of Kim Moy (smiling Asian American woman with light-medium skin tone and graying hair, wearing a green sweater and multicolor scarf) and Denise Lopez-Majano (fair skinned, woman wearing glasses with graying, medium length hair wearing a light blue fleece top). Under each photo is their name and the name of the webinar along with dates Nov 16 and Nov. 22 both at 3 pm ET.

November is National Family Caregiver Appreciation Month.

#MEAction is bringing you two powerful webinars with Kim Moy and Denise Lopez-Majano to honor and support caregivers in our community. Caregiver Wisdom and #MEAction will be sharing more resources throughout the month as well!

#caregiver

Logos of organizations above the text: "Together, we’re highlighting Caregiver resources & events with one united hashtag: #UnitedForME" for National Family Caregivers Month.

This November, for National Family Caregivers Month, we’re joining forces with @solveme.bsky.social, @openmedf.bsky.social & @meactnet.bsky.social to highlight caregiver resources, events & support.

Together, we’re stronger, and united in care. 💙
Follow and share using #UnitedForME

I am very excited about the ICANCME #MyalgicEncephalomyelitis conference. (At a time when I am generally struggling to hold on to hope.) Gracias @sabrinapoirier.bsky.social & co ❤️. Stellar presenters,updates,overviews
@scishow.bsky.social @hankgreen.bsky.social @johngreensbluesky.bsky.social

Students, competition judges, and organizer Armani Guerra pose behind a large yellow M in an event space at the University of Michigan. The four students hold up a check representing their top prize from the competition. The text reads, “The Sick Times. Business school competition centers Long COVID and IACCs. By Betsy Ladyzhets.”

“The fact that I could do something about it [by participating in the competition] gave me a sense of agency.” - Jane Kim, Member of the winning team who has been affected by Long COVID herself

Last Friday, students at University of Michigan’s Ross School of Business in Ann Arbor participated in the first-ever case competition focused on #LongCOVID and infection-associated chronic conditions (IACCs).

Read @betsyladyzhets.bsky.social's reporting from the event: bit.ly/43VHy2f

I think the difference is emphasis and focus. Harris ran on so many things, it muddled her policies. Mamdani was successful because he had 3 policies that almost everyone can recall. Sherrill ran on freezing the costs of electricity. The key is make your name synonymous with those policies.

I’ve called my Oregon Senators and told them to change leadership. We can’t wait until 2028 elections. Schumer needs to be removed from leadership as soon as the shutdown ends.

After the shutdown ends, the Senate Dems need to replace him as leader. How can we have a leader who aligns himself with Trump against the Democratic candidate?

Schumer aligns himself with Trump against the Democratic candidate. What does that say about Democratic leadership?

COVID-19 Vaccination Linked to Lower Risk of Long COVID in Adolescents | AJMC COVID-19 vaccination before infection lowered long COVID risk in adolescents, highlighting vaccines as an effective prevention strategy.

American Journal of Managed Care:'COVID-19 Vaccination Linked to Lower Risk of Long COVID in Adolescents'

'Given the profound impact [long COVID] can have on the health & well-being of adolescents & the lack of available treatments, these findings support vaccination'

www.ajmc.com/view/covid-1...

COVID vaccination cuts risk of long-term symptoms in teens by over a third, data suggest

CIDRAP: 'COVID vaccination cuts risk of long-term symptoms in teens by over a third, data suggest'

'RECOVER-Pediatrics is an observational cohort study of long COVID (LC) based on caregiver-reported survey data...'

www.cidrap.umn.edu/covid-19/cov...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome Research could offer hope for ME patients – but some experts urge caution and say more studies needed

“other experts called for more studies to confirm the finding, and for the test to be assessed among a wider population of patients.”

www.theguardian.com/society/2025...

Breakthrough blood test finally confirms Chronic Fatigue Syndrome A team of scientists has developed a highly accurate blood test for Chronic Fatigue Syndrome. The test reads tiny DNA patterns that reveal the biological signature of the illness. For millions who’ve ...

Well, this is some good news.
Breakthrough blood test finally confirms Chronic Fatigue Syndrome www.sciencedaily.com/releases/202...

HealthRising interviews Steve Gardner from PrecisionLife The interview covers why and how the company got involved in ME/CFS research, their approach and goals and some details of partnerships and trials. Their analysis of the DecodeME data is also discussed with the expectation of a preprint with the results to be released in the coming weeks.

HealthRising interviews Steve Gardner from PrecisionLife @precisionlife.bsky.social

www.healthrising.org/blog/2025/10...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @cortjohnson.bsky.social

Red State Workers Could Lose Out on Disability Benefits as Trump Administration Rewrites Eligibility Rules Planned changes to Social Security’s disability program could leave hundreds of thousands of older blue-collar workers ineligible for aid. These changes would fall disproportionately on some of Presid...

Disability in the US is already difficult to get. This will only cause more people to become homeless.

www.propublica.org/article/soci...

Australian scientist who alerted world that Covid is airborne wins top science prize Prof Lidia Morawska says recognition of her research comes at a fraught time – an ‘age of anti-science’

Australian scientist who alerted world that COVID is airborne wins top science prize

When the WHO falsely claimed in March 2020 that COVID wasn’t airborne, Professor Lidia Morawska took action—organising 239 scientists worldwide to warn about SARS-CoV-2 airborne spread and urge global recognition.

For patients with Long Covid: you can now participate in a remote treatment trial of tirzepatide (a GLP-1 inhibitor also known as zepbound).

The study is organized by Scripps Research and aims to enroll 1000 participants.

This is why Zohran Mamdani will be the next mayor of NYC.

F.D.A. Drug Unit Chief Resigns, Citing a ‘Toxic’ Environment

I’m not sure if I’d be willing to try new drugs approved under this administration. This is a huge red flag. Gifted article.

F.D.A. Drug Unit Chief Is Placed on Leave, and Cites a ‘Toxic’ Environment www.nytimes.com/2025/11/02/h...

He needs to be removed from his position of leadership before then.

I remember people screaming at Arab Americans in Michigan for "voting against their own interests" when they took an *actual* moral stand and refused to vote for a genocide enabler. Same folks are strangely quiet about Chuck Schumer openly siding with MAGA for what he believes is a moral stand.

Glad to see Maxwell Frost involved in grassroots engagement.

There’s no data on this yet, but I can’t help wondering whether remibrutinib, a selective BTK inhibitor that prevents mast cell degranulation and was just approved by the FDA for chronic hives, might also benefit patients with MCAS or Long COVID.

Kids exposed to COVID in utero may be at higher risk for autism, other brain problems

Kids exposed to COVID in utero may be at higher risk for autism, other brain problems www.cidrap.umn.edu/covid-19/kid...

Medicare for All would save $450B a year.

Every dollar spent on food stamps generates $1.50-$1.80 in economic activity.

Each dollar going to low-wage workers adds $1.20 to the economy overall.

It’s not about what this country can or can’t afford.

It’s about priorities.