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TwoShaws

@twoshaws.bsky.social
1.4K followers 984 following 34 posts

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

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Citizens for Alternatives to Animal Research and Experimentation @caare.bsky.social · 13/08/2025
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...
news-medical.net
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, ...
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DecodeME @decodemestudy.bsky.social · 06/08/2025
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘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.
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Brian Fog @uselesspriest.bsky.social · 31/07/2025
@georgemonbiot.bsky.social
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
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
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Hilda Bastian @hildabast.bsky.social · 25/07/2025
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
bmj.com
Patients with severe ME/CFS deserve better than unproven theories
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Gregg Gonsalves @gregggonsalves.bsky.social · 20/06/2025
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...
thenation.com
Bill Cassidy: A Profile in Cowardice
The Louisiana Republican knew better than to vote for public health enemy RFK Jr. He did it anyway.
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Miranda Yaver @mirandayaver.bsky.social · 21/05/2025
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.
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Michele/Meidas Fan @michelemanziano.bsky.social · 15/05/2025
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 06/05/2025
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...
cbsnews.com
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.
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Gregg Gonsalves @gregggonsalves.bsky.social · 30/04/2025
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...
motherjones.com
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.
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C.H. Romatowski @chromatowski.bsky.social · 26/04/2025
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/
consultations.nhmrc.gov.au
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
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David Kaufman @kaufmanmd.bsky.social · 25/04/2025
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.
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TwoShaws @twoshaws.bsky.social · 23/04/2025
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...
frontiersin.orghttps
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STAT @statnews.com · 22/04/2025
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.
buff.ly
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.
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Michiel @murtoz.bsky.social · 02/04/2025
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/...)
A table showing how many people with M.E. have experienced permanent worsening of symptoms from a Post Exertional Malaise (PEM) crash. 

tl/dr: Over 67% of the 1534 people with M.E. who responded to this question, have experienced a crash that has never resolved. In other words, their health became permanently worse, with more and/or higher severity symptoms.
This exact figure is the perfect showcase of why the treatment of people with M.E. in the UK is the greatest medical scandal of ther 21st century, as the vast majority of us will have been recommended excercise (and this is *still* happening today despite what we know), which will have caused significantly more PEM crashes, and thus more permanent deterioration.
 
The table shows respectively the % and number of respondents who had experienced that particular PEM duration

This is the full content of the table:

Table 6. Duration of PEM, illness course, and functioning (N = 1534)*. 

Items: % (n)*
Length of prolonged, unpredictable recovery period: 95.2 (1460)
================================================
Within 24 h: 14.1 (216)
Between 1 and 2 days: 38.9 (596)
Between 3 and 6 days: 58.0 (890)
Between 1 week and 1 month: 46.7 (717)
Between 1 and 6 months: 30.3 (465)
Between 6 months and 1 year: 13.6 (209)
Between 1 and 2 years: 9.8 (151)
Over 2 years: 12.3 (189)
Crash that has never resolved: 67.1 (1029)*

* "(N=1534)"; "% (n)" and the full last line "Crash that has never resolved: 67.1 (1029)" are highlighted in bright yellow.

Source: https://www.mdpi.com/2075-4418/9/1/26
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David Kaufman @kaufmanmd.bsky.social · 29/03/2025
Yes, exactly. And that includes ICE, and all the other enforcers of this fascist agenda.
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David Kaufman @kaufmanmd.bsky.social · 29/03/2025
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.
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David Kaufman @kaufmanmd.bsky.social · 29/03/2025
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.
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Chris Hayes @chrislhayes.bsky.social · 29/03/2025
Everyone should read this.
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Adam @abrokenbattery.bsky.social · 16/03/2025
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!
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Chantal Britt @chantalbritt.bsky.social · 15/03/2025
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.
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CALL TO ACTIVISM @calltoactivism.bsky.social · 04/03/2025
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.
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Eric Michael Garcia @ericmgarcia.bsky.social · 04/03/2025
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...
independent.co.uk
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
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Peter Morley ♿️ @petermorley.bsky.social · 02/03/2025
♿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!♿
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 25/02/2025
From the OMF-supported Medical Education Resource Center (MERC) at @batemanhornecenter.bsky.social
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Kai Ryssdal @kairyssdal.bsky.social · 22/02/2025
FFS New York Times. They’re not *his generals. Unbelievable
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Post-Viral Trials @postviraltrials.bsky.social · 20/02/2025
Really upsetting stunning article where Avi Nath goes on the record with the names of people at Merck and Bristol Myers Squibb who denied him drugs to test his immune checkpoint inhibitor theory of Long Covid. Post-viral illness still has a serious image problem. cen.acs.org/pharmaceutic...
cen.acs.org
Long COVID studies stymied by pharma’s lack of cooperation
Academic researchers want to repurpose drugs for the condition. Manufacturers aren’t supplying them
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 20/02/2025
If you live in a state with a Democrat AG, I recommend that you write them and explain what is happening.
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Elizabeth Jacobs, PhD @elizabethjacobs.bsky.social · 20/02/2025
The court ordered that NIH grant funding be unfrozen, so The Regime found a way around it. For NIH grants to be funded, a review panel must rank them. In order for a review panel to meet, they must post it on the Federal Register. Submissions to the Federal Register are now on hold “indefinitely”.
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Eric Umansky @ericumansky.bsky.social · 20/02/2025
New: DOGE's spending has been secret. No longer. My colleagues have uncovered it. www.propublica.org/article/doge...
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David Tuller @davetuller1.bsky.social · 20/02/2025
A letter to Cochrane requesting withdrawal of its flawed, outdated 2019 review of exercise therapy for chronic fatigue syndrome, in the wake of the organization's abrupt Christmas decision to abandon a planned update. virology.ws/2025/02/20/t...
virology.ws
Trial By Error: A Letter to Cochrane's Editor-in-Chief | Virology Blog
By David Tuller, DrPH This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a p ...
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Brian (Stuttering Loudly) @stutteringloudly.bsky.social · 18/02/2025
mathissweet
even if covid-19 was only dangerous for the very young, the old, the immunocompromised,
the disabled and the chronically ill, should we sacrifice them?
are all those people (and more) disposable?
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Gregg Gonsalves @gregggonsalves.bsky.social · 08/02/2025
THEY ARE BREAKING THE LAW. End/
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Gregg Gonsalves @gregggonsalves.bsky.social · 08/02/2025
The Further Consolidated Appropriations Act, 2024 (Public Law No: 118-47), enacted on March 23, 2024, includes a provision that restricts the National Institutes of Health (NIH) from altering indirect cost rates without congressional approval. 2/
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Gregg Gonsalves @gregggonsalves.bsky.social · 08/02/2025
AND IT’S ILLEGAL FOLKS: “None of the funds appropriated in this title may be used to modify or implement any change to the indirect cost rates applied to grants & contracts funded by the NIH w/o the prior approval of the Committees on Appropriations of the House of Representatives & the Senate.” 1/
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NBC News @nbcnews.com · 05/02/2025
Federal health workers are expressing fear and alarm after a website called “DEI Watch List” published the photos, names and public information of a number of workers across health agencies, describing them as “targets.”
nbcnews.com
Federal health workers terrified after ‘DEI’ website publishes list of ‘targets’
The site calls out workers who have been involved with DEI initiatives. A majority are Black.
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Robert Reich @rbreich.bsky.social · 04/02/2025
Republicans have introduced a bill to abolish OSHA. As a former labor secretary, I know firsthand how crucial this agency is to protecting workers from bosses who cut corners on safety to pad their own pockets. This is the party of corporate greed, not the party of workers.
newsweek.com
Republican calls to scrap workplace safety agency
Representative Andy Biggs made an earlier bid to abolish the Occupational Safety and Health Administration in 2021.
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David Kaufman @kaufmanmd.bsky.social · 02/02/2025
Not sure if this has been posted previously. An encyclopedic overview of all things ME/CFS and Long Covid. Great visuals for symptoms and treatment. www.frontiersin.org/journals/imm...
frontiersin.org
Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, debilitating disease characterised by a wide range of symptoms that severely impact...
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Eric Feigl-Ding @drericding.bsky.social · 01/02/2025
🛑CANCELLED—“Research on Women’s Health” funding website of the NIH.
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Science for ME (S4ME) @s4me.info · 02/02/2025
Petition update: More publicity Cochrane won't want to see from the British Medical Journal and George Monbiot Examining Cochrane's other reason for abandoning the replacement review & thanks to the 15k supporters from 85 different countries, & 79 organisations www.change.org/p/cochrane-w...
change.org
More publicity Cochrane won't want to see
The public response to Cochrane's 17th December announcement of the abandonment of the replacement review process has been building and all of it has been critical. We share some of the responses here...
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 31/01/2025
BREAKING: The Household Pulse Survey, a key source of Long COVID prevalence data, was among the CDC pages taken down today following Trump's order to remove “gender ideology” references. More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...
thesicktimes.org
Breaking: Vital Long COVID data taken down following Trump order - The Sick Times
A key source of U.S. Long COVID data is now offline following a purge of information related to sexual orientation and gender identity ordered by President Donald Trump’s administration. The Household...
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Wajahat Ali @wajali.bsky.social · 03/02/2025
The engineers are Akash Bobba, Edward Coristine, Luke Farritor, Gautier Cole Killian, Gavin Kliger, and Ethan Shaotran.
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Butlerian Jihadist of House Dornick @shimminykricket.blacksky.app · 02/02/2025
An anonymous person at the CDC just archived all the public CDC datasets as of 1/28 and uploaded it to archive.org
archive.org
Internet Archive: Digital Library of Free & Borrowable Texts, Movies, Music & Wayback Machine
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George Chidi, Evil Reporter @neonflag.bsky.social · 03/02/2025
Hey. I'm a journalist in Atlanta. I write for The Guardian and Rolling Stone. If you work for the federal government, and want to connect in person to discuss the illegal and unconstitutional activities you are seeing inside your agency, send me a note via Signal. They can't kill us all.
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Hilda Bastian @hildabast.bsky.social · 24/01/2025
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day: absolutelymaybe.plos.org/2025/01/24/w... #mecfs
absolutelymaybe.plos.org
When Journal, Scientific Society, and Community Values Clash - Absolutely Maybe
A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not…
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Alt National Park Service @altnps.bsky.social · 31/01/2025
Our coalition has grown to 30,000 federal employees. Details regarding new guidance will be distributed. For those not in our coalition, here is a public message: hide any online content that is public, document everything you witness or experience, and keep daily notes at home with dates and times.
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xbarx1 @roberteames.bsky.social · 31/01/2025
The GOP wants to fund billionaire tax cuts—and let disabled Americans pay the price. People will die. www.motherjones.com/politics/202...
motherjones.com
Trump's war on Medicaid will institutionalize millions of people
The GOP wants to fund billionaire tax cuts—and let disabled Americans pay the price.
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Bateman Horne Center @batemanhornecenter.bsky.social · 13/01/2025
Post-COVID #MECFS rates are 15x higher than pre-pandemic levels. New research highlights the urgent need for awareness and care. Explore the findings: loom.ly/wLycS1s
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