8Eevert ✨
@8Eevert
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Neurodivergent citizen researcher dad fighting #LongCovid, #MECFS and systemic neglect.
Finland
Joined April 2021
I am running out of time. I am out of energy and resources. I have never been less capable of communicating the severity of my situation. I have never been less capable of attaining the help I need. I have never needed help more. I have never been worse. I have three weeks.
Here’s the thing. For me, time is not measured in days. Time is measured in functioning. Without it—days lose meaning. Unfortunately, my ability to function with #MECFS & #LongCovid depends on cash. If you can donate—you can gift time with meaning. 🙏 https://t.co/9DBwnZnfg0
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Metabolic Neuropsychiatry (2025): “This book is open access, which means that you have free & unlimited access” 🆓📚😇👌 Chapter 3—Brain Energy Constraints & Vulnerability: “As a highly active organ, the awake brain operates at near capacity.” 🧠🔥😲 Recommended. Link below. 👇
At rest, the large majority of the brain’s energy budget is required to sustain vital functions. There’s very little reserve for growth, maintenance, and repair (GMR) processes. Other organs like muscle have much larger energy reserves. More here: https://t.co/Uq3Wt8ADap
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“Long-Term Neurological & Cognitive Impact of COVID: A Systematic Review and Meta-Analysis in over 4 Million Patients”—BMC Neurology 2025 https://t.co/94fhYlI8O5 “COVID & Cognitive Impairment: A Review of the Emerging Evidence”—Discover Mental Health 2025
link.springer.com
Discover Mental Health - The recent surge of COVID-19 cases has raised concerns about its potential long-term effects on cognitive function. This review explores the growing body of research...
@drbecs @Ninawildflower @Jonharper70bd @aldenejones @Doug_Lemov @MattRKay @BAMRadioNetwork which studies are you thinking of when you discuss the cognitive consequences of COVID?
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This clip from 2018 perfectly captures just how passionate @davidtuller1 is and how shocked he was by the way the PACE trial was defended. His crowd funding has just 1 day to go and he’s ~$10k from his target. I’ve just donated again so he can carry on doing his important work
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PS. For anyone looking to get a diagnosis, this might be an extremely valuable detail to know about: “The 2024 NASEM definition clearly states that #LongCovid does *not* require laboratory confirmation or other proof of initial infection.” (The 2021 WHO definition agrees.)
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> This article seems to be a veritable goldmine of quotes for self-advocacy in healthcare 🧵📚 “When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine”, Ochsner Journal 2025 https://t.co/pj3oGTRyUH
#LongCovid #MECFS #IACC
#MedicalGaslighting
pmc.ncbi.nlm.nih.gov
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“The way we communicate with our patients, especially those with invisible illnesses, becomes extremely important in establishing trust.” “Practicing medicine with humility is one of the most powerful ways we can build that trust.”
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“Many of these individuals have previously encountered doubt or dismissal from physicians, making it harder for them to trust us. The key is humility.” #LongCovid #MECFS #IACC
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“How can we be sure we are not gaslighting our patients? By remaining humble.”
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#MedicalGaslighting: “an act that invalidates a patient's genuine clinical concern because of physician ignorance, implicit bias, or medical paternalism”
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“Physicians have tremendous difficulty keeping abreast of all the new information available.” “For our patients, however, taking care of a chronic illness can be a full-time job. Most have done the research themselves. Let your patients be your partners.” #LongCovid #MECFS
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“Listening to our patients is critically important.” “As physicians, we must accept that these patients may know more than we do about their condition.”
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“most medical schools do not teach about infection-associated chronic illnesses” #LongCovid #MECFS #IACC
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“When We Don’t Have All the Answers: #LongCovid and the Need for Humility in Medicine”, Ochsner Journal 2025 This article seems to be a veritable goldmine of quotes for self-advocacy in healthcare. Applies to ME, LC, IACCs. 🧵 See thread for more quotes, link at the bottom. 📚
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> NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” Glad to see the debunking by @JKBurmeister followed up with a refutation in the same journal: “Altered Effort & Deconditioning Are Not Valid Explanations of #MECFS”, Nature Communications 2025 https://t.co/wL9ws0yo4r
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@abeeseady @Nosey_MF @ZdenekVrozina > we may not—or should not—always presume BBB integrity For #antihistamines to stay out of the brain, they need to be *actively* kept out by a BBB transporter called P-Glycoprotein. Many neurodegenerative insults, eg. lipopolysaccharide-induced #neuroinflammation, affect P-gp.
@MarkMooch > I have a feeling some of the meds I'm on already (for #POTS and #MCAS) are anticholinergic also. That’s possible. For one thing, many antihistamines are directly #anticholinergic. Even if not, #antihistamines inhibit central acetylcholine release if they get through the BBB.
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@ZdenekVrozina > More than 2 years after infection, people with #LongCovid still show signs of a leaky BBB Great explainer thread—I especially appreciated the acknowledgement that we knew to expect this. One implication: medications such as #antihistamines may have surprising central effects.
SARS-CoV-2 doesn’t just accidentally harm the brain. It has multiple viral proteins that actively break down the BBB. We’ve known this for years. Let’s recap the key players
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Persisting Impact of Psychosomatic & Psychiatric Misdiagnoses • adverse outcomes in multiple domains of wellbeing • vulnerability to confirmation bias • damage to sense of self & worth • fear of future disbelief Rheumatology 2025 https://t.co/fezSb0JEJp
#MedicalGaslighting
A new study just revealed how psychologically damaging it is to tell a patient that their symptoms are in their head. Here is what they found...🧵
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Persisting Impact of Psychosomatic & Psychiatric Misdiagnoses • adverse outcomes in multiple domains of wellbeing • vulnerability to confirmation bias • damage to sense of self & worth • fear of future disbelief Rheumatology 2025 https://t.co/fezSb0JEJp
#MedicalGaslighting
A new study just revealed how psychologically damaging it is to tell a patient that their symptoms are in their head. Here is what they found...🧵
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Some people who don’t “think for themselves” and don’t “do their own research” really should
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