MonzaMayhem
monzamayhem.bsky.social
MonzaMayhem
@monzamayhem.bsky.social
Mother of child with ME/CFS; trying to create a life for him while waiting for answers from medical research. My oldest is a wildland firefighter. I post primarily about public health, ME/CFS, Long Covid, and wildland firefighting.
Pinned
Excellent new Clinical Care Guide for managing ME/CFS and Long Covid from Bateman Horne Center.

@batemanhornecenter.bsky.social
#ME/CFS #pwME #LongCovid

batemanhornecenter.org/wp-content/u...
batemanhornecenter.org
Interesting proposal from Josh Hawley to provide a tax deduction for out of pocket medical expenses, including premiums. Surprised that Dems haven’t suggested something similar. Obviously Medicare for All would be better, but this would help.

www.hawley.senate.gov/hawley-annou...
Hawley Announces ‘No Taxes on Healthcare’ Legislation to Lower Costs - Josh Hawley
WASHINGTON —  Today, U.S. Senator Josh Hawley (R-Mo.) announced the No Taxes on Healthcare Act to provide relief for American families from out-of-control medical costs that have skyrocketed in recent...
www.hawley.senate.gov
December 4, 2025 at 9:01 AM
Reposted by MonzaMayhem
Just finished going through interview transcripts for this project, and I was struck by a participant's recollection of how their oxygen tank was repossessed when they lost their job and lost their employer-sponsored insurance coverage. Lung cancer, post-op.

Inhumane.
December 3, 2025 at 10:56 PM
Reposted by MonzaMayhem
In this robust call-in exchange, a hospital care manager & @egbertowillies.com warn that Medicare Advantage is a corporate trap marketed with freebies but built on denials, delays, & restricted care. Once illness strikes, Medicare Advantage’s bureaucracy can become a life-threatening barrier.
1/2 ⬇️
December 3, 2025 at 5:32 AM
Reposted by MonzaMayhem
Check out the new WHN article on Long COVID Prevalence, Search Interest, and Funding!

It comes with two nice interactive tools:
whn.global/long-covid-i...
Long COVID in Context: Prevalence, Search Interest, and Funding - WHN
By Gregory Kirchhoff, Matthew Martin, and Luke S The exact risk of developing Long COVID after a SARS-CoV-2 infection remains difficult to quantify. Research on the condition is still relatively young...
whn.global
December 4, 2025 at 1:59 AM
Reposted by MonzaMayhem
"How to Help With ME/CFS and Long COVID Disability Claims"

www.medscape.com/viewarticle/...

Lots of good tips to deal with insurance companies.

Government schemes can vary by country but people in most countries can probably pick up useful tips from this also.

#MEcfs #LongCovid #CFS #PwME
November 26, 2025 at 5:06 PM
Reposted by MonzaMayhem
If AI eliminates millions of jobs, how will people survive?

Will AI destroy democracy with a massive invasion of our privacy?

Could a superintelligent AI replace humans in controlling the planet?

We must act NOW. AI must benefit all of us, not just billionaire investors.
AI poses unprecedented threats. Congress must act now | Bernie Sanders
Despite the speed at which it is progressing, AI is getting far too little discussion in Congress, the media and within the general population. That has got to change
www.theguardian.com
December 2, 2025 at 3:57 PM
Reposted by MonzaMayhem
'Long COVID patients face more than double the healthcare costs after diagnosis'

'"Long COVID is a debilitating disease for patients, presenting in a myriad of ways, with far-reaching implications for those affected."

www.news-medical.net/news/2025120...
Long COVID patients face more than double the healthcare costs after diagnosis
People with Long COVID use the health service significantly more than they did before their diagnosis. These patients need to use GP, outpatient, inpatient and emergency department services more than ...
www.news-medical.net
December 2, 2025 at 4:57 PM
The U.S. Is Funding Fewer Grants in Every Area of Science and Medicine www.nytimes.com/interactive/...
The U.S. Is Funding Fewer Grants in Every Area of Science and Medicine (Gift Article)
A quiet policy change means the government is making fewer bets on long-term science.
www.nytimes.com
December 2, 2025 at 11:47 AM
Reposted by MonzaMayhem
Palantir has received billions to create a surveillance state.

www.brennancenter.org/our-work/res...
ICE Wants to Go After Dissenters as well as Immigrants
The Trump administration is being open about its plans to violate Americans’ First and Fourth Amendment rights.
www.brennancenter.org
December 1, 2025 at 6:41 AM
Reposted by MonzaMayhem
Threatening voters in Tennessee
December 1, 2025 at 8:18 AM
Reposted by MonzaMayhem
Remarkable story of a Georgia high school team who used CRISPR to make a rapid diagnostic test strip for Lyme disease, speeding dx from 2 weeks to days
www.cbsnews.com/news/teens-m...
Teens may have come up with a new way to detect, treat Lyme disease using CRISPR gene editing
To compete at iGEM, a sort of science Olympics, teens at a Georgia high school set their sights on finding a better way to detect and treat Lyme disease. Their approach uses CRISPR gene editing.
www.cbsnews.com
December 1, 2025 at 4:06 AM
Reposted by MonzaMayhem
'What surprised them was that 16.3% of those babies received a neurodevelopmental diagnosis by three years, compared with 9.7% of the babies who were not exposed to COVID-19 in utero'.

www.propublica.org/article/covi...
Amid Confusing CDC Guidance About Vaccines, Study Highlights New Risk of COVID-19 During Pregnancy
A Harvard study found that the children of women who contracted COVID-19 while pregnant may be at an increased risk for autism and other diagnoses, raising new concerns about the CDC’s decision to sto...
www.propublica.org
November 29, 2025 at 8:13 PM
Reposted by MonzaMayhem
Trump was set to unveil his health care plan to the public this week, but now plans to delay it after backlash from Republicans in Congress.

“I wasn’t expecting the proposal to be Obamacare-lite. Absolutely not supportive of extending ACA subsidies," one anonymously said. trib.al/zGdWFjK
Trump Delays His Health Care Plan After Revolt From Republicans
Republican members of Congress are pissed about the health care plan Donald Trump came up with.
trib.al
November 29, 2025 at 8:06 PM
More ways the American healthcare system wants to screw us.

youtube.com/watch?v=81uZ...
Billionaire Banks Found a New Way To Trap You In Debt
YouTube video by More Perfect Union
youtube.com
November 27, 2025 at 9:05 AM
Very sad what’s happening in Thailand. Thankful Happy Doggo @niallharbison.bsky.social can help.

youtu.be/MCP7BwKIvnA?...
Emergency Response: Delivering Lifesaving Aid to Flood Stranded Dogs in Thailand
YouTube video by Happy Doggo
youtu.be
November 26, 2025 at 9:51 PM
Reposted by MonzaMayhem
5 years ago I started a team competition on Twitter to raise $ to fight hunger.

@tmprowell.bsky.social gave us a hashtag & much needed organization

Our team of teen volunteers work wonders in the background & we’ve raised >$3.1 million!

Competition starts tomorrow, join us?

HCWvsHunger.org
Healthcare Workers vs Hunger
Healthcare workers vs Hunger is an annual friendly competition between teams of healthcare workers to help relieve food insecurity.
HCWvsHunger.org
November 26, 2025 at 7:55 PM
Reposted by MonzaMayhem
Data analyzed by the advocacy group Grassroots Wildland Firefighters shows that prescribed fires and other hazardous fuel reduction efforts have fallen by nearly 40% across the West this year.
Prescribed fire, other hazardous fuel projects declined significantly in 2025, advocates warn
Data analyzed by the advocacy group Grassroots Wildland Firefighters shows that prescribed fires and other hazardous fuel reduction efforts have fallen by nearly 40% across the West this year.
www.kjzz.org
November 19, 2025 at 4:05 PM
Reposted by MonzaMayhem
We found that 11 of Trump’s DOT appointees disclosed between $12 million and $52 million in stock holdings and other financial interests in airlines, railroads, oil and gas corporations, transportation technology firms and other related businesses.

By @jessecoburn.bsky.social
How Trump’s Transportation Department Is Loosening Safety Rules Meant to Protect the Public
ProPublica has identified dozens of instances in which the Trump administration’s DOT has moved to cut, soften or delay safety regulations for cars, trucks, planes, trains and even oil pipelines. Expe...
www.propublica.org
November 25, 2025 at 3:00 AM
Early Signs Point to a Harsh Flu Season in the U.S. www.nytimes.com/2025/11/19/h...
Early Signs Point to a Harsh Flu Season in the U.S.
www.nytimes.com
November 25, 2025 at 3:52 AM
Reposted by MonzaMayhem
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.

substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 23, 2025 at 6:23 PM
Reposted by MonzaMayhem
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Questionnaire | page 1
www.soscisurvey.de
November 22, 2025 at 8:36 AM
Reposted by MonzaMayhem
To be clear, all MAHA has accomplished is putting cane sugar into Coke and removing red food dye.

They’ve also destroyed the CDC and public confidence in vaccines.

They claim to want “healthy living” yet we’re getting forever chemicals in our food.

It was never about health.
EPA just approved new ‘forever chemical’ pesticides for use on food
Critics warn the EPA’s approvals of new PFAS pesticides could expose more Americans to “forever chemicals” through their food.
www.washingtonpost.com
November 24, 2025 at 9:49 PM