#seid — Public Fediverse posts

4/

“On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing

(US)
Tell Congress: Fund ME/CFS Research Now

Deadline is April 15 I believe

https://solvecfs.quorum.us/campaign/157943/

Image is from the AMMES April 2026 newsletter

#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Not feeling well at all today, so my #ServiceDog is reminding me to just take it easy and get some much needed rest. 😔

#SEID #mecfs #dogs #DogsOfMastodon

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @longcovid @mecfs

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs @longcovid

Friss, arbeite, stirb. Die 'sorgenfreie Rente'? Ein raffiniertes Märchen der Eliten. Sie meisterten die Umverteilung, täuschten Massen, um auf deren Kosten ihren Reichtum zu mehren. Eine Fabel, um die Wenigen zu nähren. Nur wer dieses Machtspiel durchschaut, herrscht wirklich. #DIW #Wir #machen #nicht #mehr #was #ihr #sagt #ihr #und #eure #Zunft #seid #entlarvt #rucktrittjetzt

Zahlen sagen nicht viel: Jeder Vierte bekommt nach 45 Jahren unter 1300 Euro Rente - n-tv.de https://share.google/LOvzvvhOpMFzJ70Ni

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid
@mecfs @longcovid

2/
From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #MEeps #CFSME #CFIDS #SEID #PwLC
#PostCovidSyndrome #postcovid @mecfs #MEcfs #CFS #PwME @longcovid
#LongCovid

2/

From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf

#MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #PwLC
#mecfs #LongCovid
#PostCovidSyndrome #postcovid @mecfs @longcovid

Sliding further down into PEM today 🫨

P.s. If you're on Instagram, I recommend me_in_a_comic (fennine) who makes great cartoons showing chronic illness life.
When a picture says more than a thousand words...
#LongCovid #pwME #longlyme #QVS #SEID

2/

A pilot cross-sectional investigation of symptom clusters & associations with patient-reported outcomes in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome & #PostCOVID19 Condition

"None of the four symptom clusters identified were unique to ME/CFS or #PCC"

https://link.springer.com/article/10.1007/s11136-024-03794-x

@mecfs @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

Much to the consternation of his Federalist Society colleagues,
#Leonard #Leo had also begun
🔥cannibalizing the organization’s own deep-pocketed donors to help finance some of his more personal initiatives
— and those of his friends.

In 2010, he co-founded along with Ginni Thomas an organization called "Liberty Central";

Thomas was the wife of his good friend Justice Clarence Thomas and they used a $500,000 donation from Dallas real estate billionaire #Harlan #Crow,
also a donor to the Federalist Society.

The group billed itself as “America’s Public Square,” promising to preserve freedom and reaffirm the core principles of the Founding Fathers.

The following year, he joined the board of "Chicago Freedom Trust", which had been set up by manufacturing billionaire #Barre #Seid as a pass-through
to anonymously channel funds to initiatives he wished to support
and to take advantage of the recent #Citizens #United ruling shielding big donors from disclosure.

Leo met Seid through #Eugene #Meyer, president of the Federalist Society, who envisioned the wealthy manufacturing tycoon as a potential donor to the law society.

Instead, Leo cultivated him as a funder of his own dark-money network.

The move brought Leo into contact with other central figures of the conservative dark-money world
— like #Whitney #Ball and #Adam #Meyerson,
the main actors behind #DonorsTrust, who were responsible for anonymously funneling hundreds of millions of dollars to various conservative grassroot groups,
including some linked to the far right.

He also used his influence there to divert funds to Opus Dei, with the pass-through soon becoming a regular donor to the Oakcrest School.

As Leo’s access to the world of dark money grew, his Opus Dei friends the Corkerys became critical as a front for the tens of millions of dollars streaming through Leo’s hidden network of nonprofits.

Neil and Ann had provided crucial cover for him during the campaign to secure the confirmations of John Roberts and Samuel Alito in 2005,

hiding the hundreds of thousands of dollars spent to influence public opinion.

As more dark money poured in starting in 2010, they began to do the same again through various nonprofits such as the "Wellspring Committee" and the "Judicial Crisis Network".

Their importance only grew following Scalia’s death,
as Leo pumped his network for ever larger sums.

In the weeks after Scalia’s death, the Corkerys began opening the purse strings in what would eventually become a 🔥$17 million campaign to stop Obama from replacing Scalia
and instead ensure a reliable conservative filled the vacancy.

It was just the start.

Over the next five years, Leo and the Corkerys would oversee the transfer of almost 🔥$600 million of dark money to right-wing causes.

Their hidden ecosystem would eventually enable a conservative takeover of the Supreme Court that would disassemble
hard-won civil rights and turn back the clock on issues close to their hearts
— on abortion,
on affirmative action,
and on vast swathes of what they saw as a progressive agenda.

#Leonard #Leo’s status as the world’s third most powerful figure soon made him a rich man.

During his time at the Federalist Society,
he had hardly been a pauper,
bringing in around $400,000 a year.

But with six children attending The Heights and Oakcrest, the two Opus Dei schools that charged up to $30,000 tuition annually per student,
and a burgeoning taste for good food and expensive wines,
it didn’t take long to burn through his salary.

But his life had taken a lavish turn after Trump’s victory
and his appointment as an unpaid advisor to the president on judicial appointments.

The dramatic uptick in his personal fortune dovetailed with his joining a for-profit entity called "CRC Advisors", alongside another CIC board member #Greg #Mueller.

Mueller had spearheaded the "National Organization for Marriage" vitriolic public relations strategy,
and #CRC quickly established itself as the go-to advisory firm for the dark-money network of nonprofit entities that Leo had helped set up over the years.

Once again, the Corkery name was all over the money flow.

The majority of CRC’s income came from
👉 "The 85 Fund",
a dark money non-profit that
⚠️ Leo repurposed to fund conservative causes nationwide,
and
💥that fund paid $34 million in fees to his new advisory firm over a single two-year period.

As the money rolled in, Leo began to enjoy some of the same luxuries as the billionaires he had spent years courting.

For most of his three decades in Washington, Leo had led a modest home life,
living for years in a small apartment in the Randolph Towers complex in downtown Arlington,
before moving to a single-story five-bedroom family home in suburban McLean in 2010.

But in the years since 2016, he had spent millions of dollars on two new mansions in Maine,
bought four new cars,
and hired a wine buyer and locker at Morton’s, an upscale steakhouse three blocks from the Catholic Information Center.

It was only a foretaste of what was to come.

➡️ In 2020, Leo stepped back from his duties at the Federalist Society to focus on the
dark-money network he had fostered as a side hustle during his time there.

With him, he took one of the Federalist Society’s biggest donors:
a manufacturing billionaire from Chicago called
#Barre #Seid, who was Jewish by heritage but who shared many of Leo’s conservative views.

🧨Over two decades, Seid had pumped at least $775 million into campaigns for libertarian and conservative causes,
quietly transforming himself into one of the most important donors on the political right.

Almost ninety, Seid had decided to leave his money continuing that work
— and concluded that Leo was the man to oversee that largesse.

🔥Leo had betrayed his bosses, who had tasked him with wooing the billionaire as a potential donor for the Federalist Society.

Instead, Leo had cultivated him for his own network.

Seid signed his business over to Leo, giving him control over a
🔥$1.6 billion war chest and
👉transforming him from a proxy for
dark-money donors into a donor himself.

Much to the consternation of his Federalist Society colleagues,
#Leonard #Leo had also begun
🔥cannibalizing the organization’s own deep-pocketed donors to help finance some of his more personal initiatives
— and those of his friends.

In 2010, he co-founded along with Ginni Thomas an organization called "Liberty Central";

Thomas was the wife of his good friend Justice Clarence Thomas and they used a $500,000 donation from Dallas real estate billionaire #Harlan #Crow,
also a donor to the Federalist Society.

The group billed itself as “America’s Public Square,” promising to preserve freedom and reaffirm the core principles of the Founding Fathers.

The following year, he joined the board of "Chicago Freedom Trust", which had been set up by manufacturing billionaire #Barre #Seid as a pass-through
to anonymously channel funds to initiatives he wished to support
and to take advantage of the recent #Citizens #United ruling shielding big donors from disclosure.

Leo met Seid through #Eugene #Meyer, president of the Federalist Society, who envisioned the wealthy manufacturing tycoon as a potential donor to the law society.

Instead, Leo cultivated him as a funder of his own dark-money network.

The move brought Leo into contact with other central figures of the conservative dark-money world
— like #Whitney #Ball and #Adam #Meyerson,
the main actors behind #DonorsTrust, who were responsible for anonymously funneling hundreds of millions of dollars to various conservative grassroot groups,
including some linked to the far right.

He also used his influence there to divert funds to Opus Dei, with the pass-through soon becoming a regular donor to the Oakcrest School.

As Leo’s access to the world of dark money grew, his Opus Dei friends the Corkerys became critical as a front for the tens of millions of dollars streaming through Leo’s hidden network of nonprofits.

Neil and Ann had provided crucial cover for him during the campaign to secure the confirmations of John Roberts and Samuel Alito in 2005,

hiding the hundreds of thousands of dollars spent to influence public opinion.

As more dark money poured in starting in 2010, they began to do the same again through various nonprofits such as the "Wellspring Committee" and the "Judicial Crisis Network".

Their importance only grew following Scalia’s death,
as Leo pumped his network for ever larger sums.

In the weeks after Scalia’s death, the Corkerys began opening the purse strings in what would eventually become a 🔥$17 million campaign to stop Obama from replacing Scalia
and instead ensure a reliable conservative filled the vacancy.

It was just the start.

Over the next five years, Leo and the Corkerys would oversee the transfer of almost 🔥$600 million of dark money to right-wing causes.

Their hidden ecosystem would eventually enable a conservative takeover of the Supreme Court that would disassemble
hard-won civil rights and turn back the clock on issues close to their hearts
— on abortion,
on affirmative action,
and on vast swathes of what they saw as a progressive agenda.

After seeing this video about Post-Exertional Malaise posted several times on the #MECFS hashtag, we watched it with my wife and thought it was excellent.

I decided to share it on my blog while writing a little bit about my own experience with #SEID, pacing and #PEM.

https://dmblog.com/post-exertional-malaise

Post-Exertional Malaise

https://dmblog.com/post-exertional-malaise

#PEM #MECFS #SEID

So that’s why it’s been a while since I’ve posted anything here. After 2½ weeks, I’m finally able to start checking Mastodon again… #SEID #MECFS

My doctor says I really need to take it easy though, so I’m not able to do any #sewing for now. (Mostly just sleep.) But hopefully this week I’ll be able to start getting up to speed with everyone else’s @sewing posts on Mastodon from bed!

Then a week later with climate control issues continuing in the house, I had to visit the ER and spent the day there.

The doctors determined that there were no underlying heart issues to provoke my tachycardia & hypertensive crisis but that it was all a direct result of stress due to the continuing temperature changes in the house.

This has caused me serious health effects which will take me a very long time to recover from! #SEID #MECFS #Toronto

Ended up needing to call an ambulance after my last post on Mastodon. Paramedics said my body was beyond stressed & having a difficult time adjusting to such a drastic and sudden increase in temperature.

https://mastodon.social/@DanielMenjivar/113047952579911131

#Toronto #SEID #MECFS

#Leonard #Leo, the conservative activist with an estimated
💥 $1 billion at his disposal,
is threatening to withhold money from the dozens of groups he supports 👉 unless they develop plans to "weaponize" their ideas.

Why it matters:

Leo's call for conservative groups to get #more #aggressive will send shockwaves through the right-wing ecosystem he helped create.

Leo wants less conversation and more action
— fewer seminars and more campaigns
— as part of a plan to
♦️"crush liberal dominance at the choke points of influence and power in our society,"
he told the groups in a letter obtained by Axios.

The goal should be to direct "funding🔸 to operationalize or weaponize the conservative vision," Leo wrote.

Zoom in:

Leo, 59, is telling organizations backed by his #85Fund that he's undertaking a
"comprehensive review" of his grant-making process.

His letter doesn't mention any specific groups by name, but they know who they are.

Groups such as Teneo,
Honest Elections Project,
Consumers's Research and
Do No Harm
are examples of organizations that have adopted
the kind of #aggressive #tactics Leo encourages, according to a source close to the 85 Fund.

Those groups have run campaigns that have achieved measurable results, such as
Consumers' Research's work on ESG investing,
which has been featured in congressional hearings.

Decisions about future funding will be shared with the groups by the end of November, Leo's letter said.

Zoom out:

Leo helped build the #Federalist #Society, an organization for conservative law students,
into an incubator for lawyers and judges that reshape the federal judiciary and American society.

He helped former President Trump select three conservative jurists for the Supreme Court
— Neil #Gorsuch, Brett #Kavanaugh and Amy Coney #Barrett.
They've transformed federal law on issues ranging from #abortion #rights (overturning Roe v. Wade) to #federal #rule-#making.

In 2022, the New York Times revealedhow a nonprofit Leo controls,
the #Marble #Freedom #Trust, received a ⭐️$1.6 billion contribution from a conservative donor, #Barre #Seid,
who gifted the shares of the company he founded before they were sold.

Leo has an estimated
⭐️$1 billion left to spend,
according to the Financial Times.

Leo, who is credited with the initial $1.6 billion windfall to Marble Freedom Trust, has been responsible for raising donations and support for the 85 Fund.

Between the lines:

Behind Leo's new push is his admiration for what he views as successes of progressive nonprofit groups
such as The #Wyss #Foundation and the
#Berger #Action #Fund,
supported by #Hansjörg #Wyss.

Leo is also convinced that liberal organizations and ideas have captured most influential institutions in government,
media, entertainment and academia.

"They invested in talent pipelines to populate the power centers inside government,
where policy would be implemented,"
Leo writes.

"They incubated litigation as a means of leveraging the law to produce change."

The other side:

As Leo's prominence and influence have increased,
his methods and his conservative network have drawn scrutiny
— and provoked outrage
— in progressive circles.

https://www.axios.com/2024/09/12/leonard-leo-conservative-groups-funding

#Ugasanie - #Seid #Near The #River | #ColdWorld Of #Eternity | https://www.youtube.com/watch?v=NdkEpCLiXMw

From: @Notjustfatigue

Is it a coincidence that three times more women than men are living with #MECFS and #MECFS is our country’s most underfunded disease, with respect to the severity of disease and the number of people affected? No. This is the seventh video in a ten part video series by #NotJustFatigue

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME

1/

Our #Toronto landlord came back from vacation, got a big electricity bill (it’s been a hot summer) so decided to shut off the A/C knowing that I am immunocompromised and have chronic health issues including #SEID #MECFS.

In the 24 hours that the A/C has been off, I’ve gotten no sleep, drenching sweats, 32 elevated heart rate notifications on my Apple Watch, a HR of 160 at rest, and am now in hypertensive crisis with a BP reading of 192/119 and rising. TeleHealth says GO TO THE ER NOW! Fuck.

2/

Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

Just one week to go with Lee Colligan’s marathon 2500km walk around Ireland in memory of his brother and in aid of ME.

People can donate to us at
https://www.idonate.ie/fundraiser/LeeColligan

Donation link for Action for ME
https://joshcolligan.muchloved.com/

#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing #EndMECFS @severeme

2/
More info on this Open Medicine Foundation Australia project: "SPOT-ME: Serial Pediatric Omics Tracking for ME/CFS"

Aims include deeply profiling the biology of patients vs controls, testing cellular energy metabolism changes and evaluating brain function with MRI.

https://www.omfaustralia.ngo/pediatrics-me-cfs-deep-omics-profiling-and-longitudinal-study/

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME

2/

From presentation: "Through an illuminating blend of life transcription & deep imaginative projection, he shows how placing fiction into the stories of our damaged lives can remind us of who we are & who we might have been, even when so much of us has been taken away by illness"

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME

4/

"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain

@LongCovidAdvoc @longcovid @mecfs

A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of #MECFS clinical research, increase collaboration, attract new researchers & formulate research priorities

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME