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twoshaws.bsky.social
TwoShaws
@twoshaws.bsky.social
#MyalgicEncephalomyelitis #pwME #SevereME #HyperPOTS #MCAS #PEM #PostExertionalNeuroImmuneExhaustion #PostExertionalSymptomExacerbation 😷
Pinned
Recommended reading for #pwME & #pwLC: “Thirty Years of Disdain — How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis” by Mary Dimmock & Matthew Lazell-Fairman. Discusses the history of NIH, CDC & HHS's invention & spread the false narratives about M.E. t.co/x6RLFL7au2 #MyalgicE
https://www.dropbox.com/s/bycueauxmh49z4l/Thirty%20Years%20of%20Disdain%20-%20Background.pdf?dl=0
t.co
Reposted by TwoShaws
Bateman Horne Center, a U.S. research center focused on studying chronic fatigue syndrome, conducted animal free research by using human data and AI to uncover the disease’s systemic roots, through linking gut, immune, and metabolic signals.
www.news-medical.net/news/2025072...
Research uncovers ME/CFS's systemic impact for targeted therapies
Millions suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating condition often overlooked due to the lack of diagnostic tools, may be closer to personalized care, ...
www.news-medical.net
August 13, 2025 at 12:45 PM
Reposted by TwoShaws
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
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Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
August 6, 2025 at 6:24 PM
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July 31, 2025 at 1:24 PM
Reposted by TwoShaws
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
Reposted by TwoShaws
My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that:

www.bmj.com/content/389/...

#MECFS
Patients with severe ME/CFS deserve better than unproven theories
www.bmj.com
July 25, 2025 at 1:03 PM
Reposted by TwoShaws
Cassidy opened the door and let RFK Jr. in. Now, he’s listlessly watching as RFK goes wild on health. Quite a precipitous fall for the good doctor. Sadly, we have not hit rock bottom yet in this new anti-vaxx era. Cassidy’s reputation still has further to fall, too. www.thenation.com/article/poli...
Bill Cassidy: A Profile in Cowardice
The Louisiana Republican knew better than to vote for public health enemy RFK Jr. He did it anyway.
www.thenation.com
June 20, 2025 at 11:44 AM
Reposted by TwoShaws
1 in 5 Americans depend on Medicaid for health insurance, but they don't all know they're on it because it may go by another name (e.g., Medi-Cal, Apple, BadgerCare). I identified the name of each state's Medicaid program. If you or someone you love is in one of these programs, call 202-224-3121.
May 21, 2025 at 12:19 AM
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May 15, 2025 at 7:53 PM
Reposted by TwoShaws
More firings at the National Cancer Institute, including the Cancer Information Service, “which provides answers to doctors and patients about cancer, and updates to databases summarizing cancer information for healthcare providers”.

I mean who needs it, right?

www.cbsnews.com/news/nih-lay...
National Institutes of Health lays off hundreds more staff, including at cancer research institute
The cuts at the National Institutes of Health blindsided staff, after reassurances that no further layoffs were planned.
www.cbsnews.com
May 6, 2025 at 12:24 AM
Reposted by TwoShaws
The architect of #NIH cuts is Russell Vought whose own daughter is alive today because of advances in treating cystic fibrosis, brought to us, to the Vought family, by NIH. 1/
www.motherjones.com/politics/202...
Project 2025 is gutting medical funding that helped Russell Vought's own kid
Its architect's daughter has cystic fibrosis—and benefits from a "miracle drug" backed by an agency he's attacking.
www.motherjones.com
April 30, 2025 at 3:51 PM
Reposted by TwoShaws
Today (Sunday in Australia) is the last day to weigh in on the AUS survey for their new ME guideline.

It’s brief and international folks can participate! As national guidelines in any country often end up influencing others, I think it’s a good use of a few mins—this could affect all of us.

1/
Scoping survey for Clinical Practice Guidelines for myalgic encephalomyelitis / chronic fatigue syndrome - NHMRC consultation hub - Citizen Space
Find and participate in activities run by NHMRC consultation hub
consultations.nhmrc.gov.au
April 26, 2025 at 10:04 PM
Reposted by TwoShaws
Think about this the next time you get 'food poisoning'. And keep in mind that increased infections--bacterial and viral--increase the risks of post infectious fatiguing illnesses, AKA ME/CFS and Long Covid.
All USDA food safety monitoring is being cut back.
Good luck to us all.
The USDA has withdrawn a plan to impose stronger safety regulations limiting salmonella levels in raw poultry.

Who was the biggest donor to Trump's inauguration fund?

Pilgrim’s Pride — one of the largest chicken processors in the country.

See how this works?
April 25, 2025 at 6:41 PM
NIH *claims* to study PEM, but fails to use the gold standard 2-day CPET. "Post-exertional malaise in Long COVID: subjective reporting versus objective assessment"
Co-authors include B. Walitt and A. Nath, what quality of science could we really expect? www.frontiersin.orghttps//www.frontie...
www.frontiersin.orghttps
April 23, 2025 at 10:18 PM
Reposted by TwoShaws
Federal funding for the Women’s Health Initiative, which as one of the largest research projects in women’s health has shaped treatment of menopause, osteoporosis, and nutrition, will stop in September.
Women’s Health Initiative, known for hormone therapy trials, to lose federal funding
The Women's Health Initiative, the enormous study that shaped treatment of menopause and other conditions, is on the verge of shutting down.
buff.ly
April 22, 2025 at 10:45 PM
Reposted by TwoShaws
Along with the fact that every single PEM crash runs the risk of permanently lowering your baseline. Making you even less functional and more ill. And this is not the exception.
>67% of #pwME (n=1534) have experienced a crash they never recovered from. (www.mdpi.com/2075-4418/9/...)
April 2, 2025 at 8:43 PM
Reposted by TwoShaws
Yes, exactly. And that includes ICE, and all the other enforcers of this fascist agenda.
How many people in a few years' time will look back and say:

'I was only obeying [executive] orders'?

en.wikipedia.org/wiki/Superio...
Superior orders - Wikipedia
en.wikipedia.org
March 29, 2025 at 11:16 PM
Reposted by TwoShaws
Ooops, there goes the science.
Maybe we can resort to prayer to save the planet. Or witchcraft. Or white christian nationalism.
Or fuck it, let's just not care and all fry and poison together.
March 29, 2025 at 7:24 PM
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The US is rapidly plunging into full on Fascism. Trump now thinks he is a king. HHS has become a pathetic and dangerous joke as RFK destroys science, research, data collection.
March 29, 2025 at 5:58 PM
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Everyone should read this.
March 29, 2025 at 8:38 PM
Reposted by TwoShaws
My 27-minute #MECFS Medical Scandal Explainer video has just hit 100,000 views on YouTube.

Given that I've only got a small channel, I think this shows there is a strong interest in the scandal.

Thank you to everyone who shared it!
New Trailer for the #MECFS #GreatestMedicalScandal Explainer Video.

Includes clips from the full video that highlights the Stigma, Abuse, Bad Science and Harm.
March 16, 2025 at 9:07 AM
Reposted by TwoShaws
Today like any other day over the past 5 years I want to draw your attention to the fact that we are witnessing a mass-disabling event with worldwide over 400 million adults, adolescents and children living with #longcovid #myalgicencephalomyelities #postvac and other postinfectious conditions.
March 15, 2025 at 5:58 AM
Reposted by TwoShaws
Omg. In a shocking moment, Nancy Bolan, a fired USAID worker and tonight’s guest of Rep. Ritchie Torres — reveals that Donald Trump has pulled the U.S. from the global polio eradication initiative — which threatens its spread to the U.S. Every single American should see this.
March 4, 2025 at 11:08 PM
Reposted by TwoShaws
Fulll article here: The National Science Foundation also axed a grant to create a model for including neurodivergent people across engineering schools in the United States.
www.independent.co.uk/news/world/a...
Trump’s war on DEI comes for programs helping autistic students find jobs in STEM
Programs meant to help autistic students study science have been caught in the Trump administration’s war on DEI, Eric Garcia reports
www.independent.co.uk
March 4, 2025 at 3:27 PM
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♿Social Security is NOT just for Seniors. It's also for people like me with Disabilities, people who receive Survivors Benefits & Veterans who receive Social Security benefits.

Before I became disabled, I PAID into the program with EVERY paycheck. There are MILLIONS more like me & it is OUR MONEY!♿
March 2, 2025 at 3:15 PM
Reposted by TwoShaws
From the OMF-supported Medical Education Resource Center (MERC) at @batemanhornecenter.bsky.social
Cognitive impairment in ME/CFS can include: ➡️ Slower reaction times ➡️ Memory & focus issues ➡️ Difficulty processing info
Cognitive impairment can worsen with PEM & orthostatic stress.
Learn more 🎥: loom.ly/ouYbrjA
#MECFS #InvisibleIllness #MECFS101 @openmedf.bsky.social
February 25, 2025 at 10:14 AM