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TwoShaws

@twoshaws

#MyalgicEncephalomyelitis #pwME #SevereME #HyperPOTS #MCAS #PEM #PostExertionalNeuroImmuneExhaustion #PostExertionalSymptomExacerbation 😷

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25.09.2023
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Latest posts by TwoShaws @twoshaws

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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, ...

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...

13.08.2025 12:45 πŸ‘ 5 πŸ” 5 πŸ’¬ 0 πŸ“Œ 0
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says β€˜We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.

DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says β€˜We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.

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

06.08.2025 18:24 πŸ‘ 254 πŸ” 146 πŸ’¬ 17 πŸ“Œ 37

@georgemonbiot.bsky.social

31.07.2025 13:24 πŸ‘ 32 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0

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

31.07.2025 06:45 πŸ‘ 217 πŸ” 114 πŸ’¬ 24 πŸ“Œ 24

Thank you πŸ™πŸΌ

26.07.2025 06:18 πŸ‘ 3 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0
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Patients with severe ME/CFS deserve better than unproven theories

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

25.07.2025 13:03 πŸ‘ 85 πŸ” 46 πŸ’¬ 15 πŸ“Œ 1
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Bill Cassidy: A Profile in Cowardice The Louisiana Republican knew better than to vote for public health enemy RFK Jr. He did it anyway.

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...

20.06.2025 11:44 πŸ‘ 221 πŸ” 81 πŸ’¬ 12 πŸ“Œ 11
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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.

21.05.2025 00:19 πŸ‘ 341 πŸ” 248 πŸ’¬ 12 πŸ“Œ 4
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15.05.2025 19:53 πŸ‘ 7958 πŸ” 1933 πŸ’¬ 327 πŸ“Œ 87
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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.

More firings at the National Cancer Institute, including the Cancer Information Service, β€œwhich 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...

06.05.2025 00:24 πŸ‘ 1794 πŸ” 871 πŸ’¬ 84 πŸ“Œ 71
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Project 2025 is gutting medical funding that helped Russell Vought's own kid Its architect's daughter has cystic fibrosisβ€”and benefits from a "miracle drug" backed by an agency he's attacking.

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...

30.04.2025 15:51 πŸ‘ 954 πŸ” 456 πŸ’¬ 45 πŸ“Œ 55
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

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 minsβ€”this could affect all of us.

1/

26.04.2025 22:04 πŸ‘ 10 πŸ” 7 πŸ’¬ 1 πŸ“Œ 1

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.

25.04.2025 18:41 πŸ‘ 13 πŸ” 3 πŸ’¬ 0 πŸ“Œ 0
Thread by @sunsopeningband on Thread Reader App @sunsopeningband: @twoShaws Some interesting notes while waiting for a flight: 🧡 The exercise cohort was not pre-screened for PEM because they did not fill out the DSQ-PEM. It's no secret that I'm not...

Link to Todd Davenport’s @sunsopeningband.bsky.social expert thread about B. Walitt, A. Nath & NIH’s latest scientifically flawed study claiming to be on ME, LC & PEM: threadreaderapp.com/thread/19150...

23.04.2025 23:58 πŸ‘ 2 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0

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...

23.04.2025 22:18 πŸ‘ 4 πŸ” 1 πŸ’¬ 1 πŸ“Œ 0
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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.

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.

22.04.2025 22:45 πŸ‘ 57 πŸ” 54 πŸ’¬ 3 πŸ“Œ 15

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/...)

02.04.2025 20:43 πŸ‘ 19 πŸ” 9 πŸ’¬ 0 πŸ“Œ 1

Also, bsky.app/profile/broa...

21.04.2025 03:27 πŸ‘ 0 πŸ” 0 πŸ’¬ 0 πŸ“Œ 0

bsky.app/profile/bate...
bsky.app/profile/meac...

20.04.2025 20:22 πŸ‘ 2 πŸ” 0 πŸ’¬ 1 πŸ“Œ 0

Yes, exactly. And that includes ICE, and all the other enforcers of this fascist agenda.

29.03.2025 23:16 πŸ‘ 2 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0

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.

29.03.2025 17:58 πŸ‘ 5 πŸ” 2 πŸ’¬ 1 πŸ“Œ 0

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.

29.03.2025 19:24 πŸ‘ 3 πŸ” 1 πŸ’¬ 0 πŸ“Œ 0

Everyone should read this.

29.03.2025 20:38 πŸ‘ 2694 πŸ” 824 πŸ’¬ 141 πŸ“Œ 39

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!

16.03.2025 09:07 πŸ‘ 52 πŸ” 19 πŸ’¬ 2 πŸ“Œ 0
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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.

15.03.2025 05:58 πŸ‘ 66 πŸ” 25 πŸ’¬ 1 πŸ“Œ 1
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Omg. In a shocking moment, Nancy Bolan, a fired USAID worker and tonight’s guest of Rep. Ritchie Torres β€” reveals that Donald Trump has pulled the U.S. from the global polio eradication initiative β€” which threatens its spread to the U.S. Every single American should see this.

04.03.2025 23:08 πŸ‘ 7297 πŸ” 3760 πŸ’¬ 223 πŸ“Œ 233
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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

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...

04.03.2025 15:27 πŸ‘ 36 πŸ” 22 πŸ’¬ 2 πŸ“Œ 1
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β™ΏSocial 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!β™Ώ

02.03.2025 15:15 πŸ‘ 9478 πŸ” 2585 πŸ’¬ 238 πŸ“Œ 99

From the OMF-supported Medical Education Resource Center (MERC) at @batemanhornecenter.bsky.social

25.02.2025 10:14 πŸ‘ 11 πŸ” 4 πŸ’¬ 0 πŸ“Œ 0
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FFS New York Times.

They’re not *his generals.

Unbelievable

22.02.2025 23:49 πŸ‘ 6036 πŸ” 1026 πŸ’¬ 191 πŸ“Œ 99