🇵🇸 Welcome to the Recumbent Renaissance. Freedom’s just another word for nothing left to lose. Amor fati. Dercum’s/ME/longcovid. Remission Biome R50

Central WA
So my account functionality appears to have been shut down and I guess it's time for me to say goodbye on here. I'm on the other app, same handle. So long and thanks for all the fish.
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When you see an account has been hacked, it’s important to go and unfollow them immediately. As the account is now owned by scammers. They will strip the account bare and ‘rebrand’ it to use as a bot 🤖 or to sell on. Isabel’s is in the process of being rebranded 😔
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“Pocket guide to potential ME/CFS diagnostic biomarkers. If anyone says, “There is no ME/CFS diagnostic test.” You can reply, “Yes, that’s correct, but there are 9 ME/CFS diagnostic blood tests in various stages of development” by @MECFSNanoneedle mecfsdiagnosticbiomarkers.su…
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Elly Bailey retweeted
Inquiring Minds Want To Know What does an "everyone problem" look like when a covert, airborne biohazard crosses the blood-brain barrier uncontained in Year 7? 👉Research & Institutional Distraction: It looks like medical research focusing on surface symptoms rather than the root drivers, ignoring clean air infrastructure, viral persistence, and true pathology while offering zero focus on prevention. 👉Internalized Patient Gaslighting: It looks like sick individuals convincing themselves they are "bad" or "wrong" for expecting basic prevention, diagnostic testing, and real treatments—internalizing systemic medical failure as personal weakness or anxiety. 👉Normalized Pediatric Vulnerability: It looks like children contracting opportunistic infections previously reserved for severely immunocompromised patients, only to be sent back into unventilated classrooms to "toughen up." 👉Psychological Defense over Truth: It looks like parents, families, and communities choosing comforting fantasies over uncomfortable reality to "protect" themselves, sacrificing long-term vascular and brain health for the short-term illusion of normal. 👉Institutional Ethics Collapse: It looks like elderly care homes, clinics, and hospitals abandoning basic hygienic standards and biohazard mitigation, paired with a complete loss of ethics across major corporations and public health organizations. 👉Erasure of Neurological Endpoints: It looks like early-onset executive dysfunction, microvascular cardiac events, small-fiber neuropathy, and dysautonomia in young adults being dismissed as burnout, aging, or lifestyle issues. 👉Misdirected Blame: It looks like a culture pointing fingers at the wrong problems and debating endless distractions while ignoring the unmitigated environmental threat right in front of them. It looks like the quiet, systemic erosion of collective human health, cognition, and resilience—and a society choosing to call that ongoing damage "normal." #LongCovid #SarsCov2 #DontLookUp #LookOverThere #HeresJohnny
What does an everyone problem look like when it is a covert airborne biohazard that crosses the blood brain barrier uncontained year 7
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Elly Bailey retweeted
I feel like we're losing the fight for the soul of this country. Everything beautiful is being exploited, destroyed, or stripped for parts. No one in power seems to care. No real opposition seems capable of stopping it currently. We're just slowly drifting toward oblivion.
The iconic weeping willow trees outside the Kennedy Center have been cut down by Trump.
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Elly Bailey retweeted
Today it's 18 months since I last stood, even for second. Covid damaged my micro-vessels and even attempting verticalisation now creates an oxygen offloading crisis in my cells and tissues, and I suffocate. How do I feel about this? The first thing I feel is empathy for my sisters and brothers with chronic illness who are going through ME, Long Covid and other nightmares. Second, as Conrad would say, "in the destructive element immerse". It's about not running away from how painful this is. Third, how do you not end up in a rudderless daily battle for physical survival? There are no templates here, but there are hopeful answers because both joy and suffering are part of life. Fourth, how do you even talk about it? This is terrain known well by the few but unguessed at by many. Fifth, there is politics here: these illnesses are solvable but are being ignored.
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🚨BREAKING 🦠 On Friday, the US CDC arbitrarily shifted higher COVlD levels into lower categories depicted with cooler colors. Much of what was Very High is now "High." What was High is now "Moderate" or "Low." Low is "Very Low." 🔹2 states/territories artificially shifted from High to Moderate (MS, GU) 🔹5 shifted from Moderate to Low (CA, TX, AK, WA, NV) 🔹4 shifted from Low to Very Low (AZ, AR, LA, NC) During intense surges, states will rarely get classified as Very High anymore. Presently, transmission is rising across the US, with a 75% chance of a wave, but states will be depicted in blue (Very Low) much longer, making communities less prepared. #Bluewashing Normally, when the CDC makes a methodology change, they flag it prominently on each of their COVlD monitoring pages. This time, there was no alert and no explanation. Major changes were confined to COVlD, not Influenza A, and not RSV. The questionable change was made in the middle of rising transmission across most of the country; 15 states already have COVlD outbreaks, and others may soon join the ranks. These are serious ethics concerns that warrant investigative journalism. These issues are aggravated by delayed reporting at High/Very High monitoring sites. Sites with 1-week reporting delays get excluded when the CDC calculates current levels. For example, only 16% of the sites online in Texas (3 of 19) report High/Very High levels, but 90% of those with a 1-week reporting delay (18 of 20) have High/Very High levels, leading the state to get classified as "Low" when really High. These issues snowball and can easily push a state down 1-2 categories when experiencing significant COVlD outbreaks. The good news is that the individual wastewater monitoring site data are still valid. The bad news is that the CDC maps and level descriptions will now mislead the casual user. Think: "Good data, bad use of data." At PMC, we told you that if there was any funny business at the CDC, we would warn you right away. We diagnosed the issue immediately and will still report accurate COVlD information. Expect further national news coverage this week. Journalists are welcome to reach out.
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Having Long Covid was and is the hardest thing I ever had and have to go through. There is no break and the hope is sometimes lost #ME #LC #PwME #MEcfs
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Elly Bailey retweeted
Sooooo….. Anyone familiar with the latency and persistence rates of Valley Fever?
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"It is hypothesised that the effects of ME/CFS can be overcome briefly for completion of saccades, but that continuous pursuit activity (accurately tracking a moving object), even for a short time period, highlights dysfunctional eye movement behaviour in ME/CFS patients. Future smooth pursuit research may elucidate and improve diagnosis of ME/CFS."
"The smooth pursuit task highlighted clear differences between patients and controls. Firstly, patients showed general deficits in their ability to closely track the moving target. Secondly, across the three test sessions, patients’ performance deteriorated more than control participants’ performance." pubmed.ncbi.nlm.nih.gov/2391…
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Elly Bailey retweeted
I developed sudden severe insomnia after a CT scan with contrast (not MRI). I collaborated with someone this also happened to, and we made a short survey to document cases so this can be formally studied. If you’ve had a reaction to CT contrast, please fill it out (link below):
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Elly Bailey retweeted
#capillariscopy Screen shots from @RenegadeRes #InnovationInn nail capillariscope from my PEM day (Sat). Less perfused then before day was my impression. Similar odd shapes. Weird horizontal vessels. @ImmunoFever Good thing had 2 vein procedures or could have been worse.
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ADHD / Glymphatic System Our findings establish glymphatic dysfunction as a feature of pediatric ADHD that co-occurs with fronto-thalamic abnormalities, nominating the glymphatic system as a potential therapeutic target for cognitive comorbidities in ADHD. Relationship of glymphatic dysfunction and frontothalamic structure with cognitive impairment in attention deficit hyperactivity disorder - PubMed share.google/GgUIcDlB7FrwRwr…
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Elly Bailey retweeted
This was with a @Topdon_Official phone attachment. Especially given how well mapped the numerology of body temperature is, I think this could be an incredible non-invasive home test.
Testing out our Innovation Inn IR camera. (One of @KatBoniface's ideas.) We're casting a wide net, measuring as much as we can during PEM! Thanks to my husband for letting us borrow it for the project. He usually uses it for HVAC/electrical stuff around our house. 😆
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In addition to collecting samples and data that might help us understand the pathophysiology of PEM and testing @IsabelRamirezRD's PEM formula, another goal of #InnovationInn was exactly this. We did the multiple-day collection, because we wanted to look at the time course and see if there were any clues that PEM was coming. This could be useful to patients as a warning that it's coming, even if they aren't feeling it yet. Personally, if I was just in a normal situation (not personally inducing PEM), based on how I felt that day, I would have thought that this day was fine and wouldn't have changed anything. However, if I had access to Right Eye and started seeing deterioration like this, even if slight, I would cancel meetings and do radical rest.
I was just thinking about that this morning, because that was my experience. Subjectively I thought I was still fine the day after exertion, but people on my team said they could tell that my cognitive function wasn't as good as it normally is. The Right Eye picked up on changes before I felt it the next day.
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Elly Bailey retweeted
Here are my RightEye test Pursuits before exertion score of 81, next day in hyper-time post-exertion before PEM score of 73, in PEM score of 28. Left eye sliding down, less circular, less consistent with each time around the circle.
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Data from @RenegadeRes showing eye tracking alterations between baseline and after triggering PEM Understanding the biology of PEM will be critical to making progress in this disease
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Heads up to ME/CFS researchers: Our @RenegadeRes team just collected 482 plasma, serum, and whole blood samples before, during, and after PEM. The majority are being set aside for specific companies to analyze, like @amaticahealth, @ChronicleBioAI, @AldenScientific, @infinitybioinc, @cdi_labs, and Theriome, but we saved some extra in case we come across additional testing. We also collected a ton of other data, like HRV, symptoms, lactate, HR, BP, etc. @immunofever's team from MIT was also there demoing nailfold capillaroscopy, WAVi EEG, and Right Eye. We want to get as many eyes as possible on our data and have as much analysis as possible done on our samples, so please reach out if you're interested in helping. #InnovationInn
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