Scientist suddenly disabled by covid-triggered ME/CFS March 2020. Still mostly bedbound, desperate for treatments and advocating for help when well enough!
USA
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#pwME problems: got to the dentist (!), had to hold my mouth open too long so the muscles fatigued and then started spasming so I couldn't get words out. Never had that happen before! Then my whole body started having muscle spasms when getting back into my wheelchair. Bizarre!
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Saw this one today--I wonder if those of us who are mostly horizontal but still able to could do brief bursts of abdominal squeezes to help "wash" our brains? (Another potential reason that the sicker you are, the less likely recovery is)
#pwME
neurosciencenews.com/abdomin…
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#pwME milestones of the day: hitting 27 breaths per minute while sleeping (usually max out around 22) and having my Garmin watch alarm go off from brushing my hair. Happy Easter to those who celebrate!
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On #LongCovidAwarenessDay the Guardian thought it would post this article, decrying the massive rise in young people off work due to ill health or disability in the last decade....without mentioning covid ONCE
theguardian.com/society/2026…
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6 years less 3 days ago, I got a mild fever and suddenly couldn't think clearly or sit upright. I'm still mostly bedbound. I was 30 and healthy. Covid is still causing record disability--even "mild" cases can destroy your life. Mask up if you value yours!
#LongCovidAwarenessDay
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Dealing with mild PEM, and apparently my brain has decided to dwell on how hurt I am that my friends and extended family have decided to act like what happened to me couldn't possibly happen to them, that covid is NBD. I just want to sleep! This is not helpful
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covidmecfshelpus retweeted
Why do we get frustrated when leaders in medicine, science, and public health do not mask?
Because it undermines the very science they claim to stand on. It normalizes misinformation. And it leaves the COVID-conscious, Long COVID, and disability community holding the line alone.
If you do not want to mask, that is your choice. But do not build a platform on infection prevention, public health, or patient safety while refusing to model the very behaviors the evidence supports. That is not education. It is contradiction. It’s also a signal that there is implicit bias in the value of the lives and health of those around you.
Why do we get upset when people get defensive about our concern? Because the expectation is simple. If you know better, do better. Accountability matters more than optics, likes, or followers.
Modeling is one of the most powerful tools in medicine and in society. What leaders do matters as much as what they say. One misleading message can reach hundreds of thousands, even millions, and undo years of patient-led education and harm reduction work, and instead enhance anti-science rhetoric and further degrade what is left of public health.
Vaccination is critical, but it does not prevent infection. Its primary role is reducing the risk of severe acute illness, and even that protection is not absolute. Every infection carries risk.
If you get COVID-19, you can develop Long COVID or other serious conditions that can disable and, in some cases, kill.
Being in science or surrounded by scientists does not remove a virus. Credentials do not stop transmission. Up to about 30 to 40 percent of infections may be asymptomatic, and people are often most contagious right before symptoms begin, if they develop symptoms at all.
For the Long COVID and COVID-conscious community, this is not abstract. It lands as dismissive. It lands as harmful. And for many patients who once supported and trusted these voices, it feels like a betrayal and dismissal of our safety.
If you choose to lead in science or public health, the responsibility is clear.
Follow the science. Model public health. Protect people.
#LongCOVID #CovidConscious #PublicHealth #MaskUp #ScienceMatters
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For the first time since I can remember, I *didn't* get really lightheaded sitting on the toilet too long with some GI distress.
Yay for improvements in dysautonomia!! (Probably not a win most people would understand 😆)
**With a footstool of course, I'm not THAT improved
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Part of me wonders if 2026 will be the new 1793, given the egregious level of inequality and lack of access to basic things like housing and food...vive la révolution?
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I don't know when this happened, but my homepage now defaults to "For You" rather than "Following" whenever I navigate away and back, and I REALLY dislike it and end up seeing much more angering content from ignorant people that I really don't have the bandwidth for!
thanks elon
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Silly admission of the day: for an embarrassingly long time I thought that MI6 was in fact the M16, named after a motorway that must go by the agency headquarters or something (same with MI5) 😂
I can’t tell you just how profound a statement this is from the head of MI6 Blaise Metreweli.
It is VERY uncommon for the head of the UK’s foreign intelligence agency to make such a public statement. There may now be a slow shift towards considering the US as representing a threat to UK national security if aligned with Russian interests.
🎥 TikTok - vm.tiktok.com/ZNRFGTJDj/
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covidmecfshelpus retweeted
🚨ATTENTION #pwME PLEASE SHARE! 🚨
Simon Wessely is vice chair on this review!
A chance to call in and expose him.
Show runs until 9pm.
Natasha is well aware of his involvement in #MECFS
Call LBC 0345 606 0973
Or text 84850
theguardian.com/society/2025…
ALT A screenshot of a Bluesky post by Natasha Devon (@natashadevon.bsky.social). It reads: “Join me from 6pm on LBC (Sat 6th December). – Why doesn’t Farage just apologise? – How worried are you about facial recognition technology? – How much faith do you have in Streeting’s mental health review?” The timestamp shows “6 Dec 2025 at 17:58” with an icon indicating everybody can reply. A small profile photo of Natasha Devon appears at the top left.
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Entered concentration-induced PEM (thanks, healthcare bureaucracy)...why can just focusing cause PEM?!? Somehow the physical triggers make more sense to me--or even the emotional ones, with the increased BP and HR. But THINKING?!? #MECFS
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This one makes me wonder if the gut microbiome differences seen in ME are just because there's a chronic infection messing things up
(And also if this is why my endometriosis got way worse when I got sick)
#polybiofallsymposium2025 Marta Mirabent from Roan Lab at Gladstone Institutes: Long COVID tissue samples from the female reproductive tract & gut are positive for SARS-CoV-2 RNA more than 4 years after initial infection.
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covidmecfshelpus retweeted
URGENT (Sydney, AU): A person with very severe ME is rapidly declining (BMI 13). They need a doctor who can immediately organise jejunal feeding to stabilise them.
If you can help, or know someone who can, DM us right now.
Please share widely. This is time-sensitive.
ALT URGENT: EMERGENCY HELP NEEDED! A person with very severe ME and other comorbidities based in Sydney, Australia, is currently at serious risk of irreversible damage to their health thanks to malnourishment and the inability to eat. They have already tried accessing care via public and private routes, but have been unsuccessful in accessing the necessary procedure that would save their life. An attempt to place an NG tube at home was unsuccessful, and they are declining rapidly. Their BMI is currently 13, and they urgently need access to a doctor who can organise jejunal feeding as quickly as possible so that they're able to stabilise. It's important to note that they are unable to tolerate overstimulating hospital environments for longer than necessary. Please share and get in contact if you know somebody who can help. This is time sensitive.
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