DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says βWe have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.β 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
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@georgemonbiot.bsky.social
31.07.2025 13:24
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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
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Thank you ππΌ
26.07.2025 06:18
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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
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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, heβs 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. Cassidyβs reputation still has further to fall, too. www.thenation.com/article/poli...
20.06.2025 11:44
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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
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15.05.2025 19:53
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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, βwhich provides answers to doctors and patients about cancer, and updates to databases summarizing cancer information for healthcare providersβ.
I mean who needs it, right?
www.cbsnews.com/news/nih-lay...
06.05.2025 00:24
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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.
Itβs brief and international folks can participate! As national guidelines in any country often end up influencing others, I think itβs a good use of a few minsβthis could affect all of us.
1/
26.04.2025 22:04
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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
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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
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Womenβs 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 Womenβs Health Initiative, which as one of the largest research projects in womenβs health has shaped treatment of menopause, osteoporosis, and nutrition, will stop in September.
22.04.2025 22:45
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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
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Also, bsky.app/profile/broa...
21.04.2025 03:27
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Yes, exactly. And that includes ICE, and all the other enforcers of this fascist agenda.
29.03.2025 23:16
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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
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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.
29.03.2025 17:58
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Everyone should read this.
29.03.2025 20:38
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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
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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
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Omg. In a shocking moment, Nancy Bolan, a fired USAID worker and tonightβs 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
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βΏSocial 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!βΏ
02.03.2025 15:15
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From the OMF-supported Medical Education Resource Center (MERC) at @batemanhornecenter.bsky.social
25.02.2025 10:14
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FFS New York Times.
Theyβre not *his generals.
Unbelievable
22.02.2025 23:49
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