Thank you for sharing this so openly. We’re so sorry you went through that. Akathisia and severe insomnia can be deeply distressing, especially without clear guidance. Experiences like yours underscore why better clinician education and clearer information on what to watch for are so needed. 💙
From @cortjohnson.bsky.social:
“The free @rthm.bsky.social & @patientled.bsky.social #LongCovid Treatment Guide is one of those publications that makes you wonder, ‘Why hasn’t this been done before?’ A succinct, evidence-based guide drs can quickly turn to learn about LC treatments.”
Thank you for sharing this. That shift in PEM sounds really meaningful, especially going from needing to stay in bed to more just wanting to. Even that kind of change can make a big difference in daily life.
There can be a kind of rebound or temporary dysregulation that shows up as restlessness or akathisia. For people with more sensitive nervous systems, that effect can feel more intense or last longer.
In some cases, this can happen because LDN interacts with the opioid system, which is closely tied to dopamine signaling and nervous system regulation. After being on it for a longer period, the body can adapt to those changes, and when it’s reduced or stopped.
That’s really powerful, especially feeling like it’s helping hold the line & prevent further worsening. It sounds like you were very intentional in finding your personal dosage, and that kind of careful titration can make a big difference. Interesting how going higher didn’t mean better for you.
That sounds like a really difficult experience, especially after giving it such a thoughtful and extended trial. Going through months of symptoms like akathisia on top of everything else is a lot to carry, and it makes sense you’d want answers around the why.
Low Dose Naltrexone (LDN) Pill image 57% of RTHM Platform users who had taken LDN reported that they saw overall improvements in their symptoms. 38% of those reported significant improvements. All data presented is based on 992 patient reports. Rthm logo at the bottom
Top Symptom Improvements 24% Experienced reduced fatigue 18% Had improved mental clarity 11% Saw reduced post-exertional malaise 18% Saw reduced aches and pains
Have you tried Low Dose Naltrexone (LDN) for Long COVID, ME/CFS, or other chronic illness symptoms? Please share in comments.
According to real-world data, 57% of RTHM Platform users who had taken LDN reported improvements, and 38% of those described the benefits as significant.
www.rthm.com
We uplift the critically important Long COVID resources and advocacy work coming from our communities.
@patientled.bsky.social x @rthm.bsky.social (feat. in @thesicktimes.org)
thesicktimes.org/2026/03/12/a...
@longcovidjustice.org x History Moves
www.listeningforthelonghaul.org
RTHM’s Take: “The growing evidence surrounding the impact of Long COVID in school-age children stands in stark contrast to the dearth of public health information parents, teachers and educators are receiving about the condition. Chronic absenteeism remains high in the United States compared to pre-pandemic levels, and this study makes a compelling case for Long COVID playing a significant role in driving this sustained change. Long COVID urgently needs to be a priority for discussion and action between our education institutions and public health institutions.” “— Jennifer Curtin, MD, RTHM Co-Founder
Study Author Conclusions: “Together, our findings suggest that long COVID has a potentially large impact on US school-aged children. Parents, caregivers, teachers, and schools may consider that children with long COVID disproportionately experience both functional limitations and sick days off from school.” “From 2018–19 to 2021–22 enrollment-weighted prevalence of chronic absenteeism in the United States increased from 14.8% to 28.3%, a 91% increase relative to the prepandemic timeframe… Schools might consider health-related factors in their ongoing efforts to improve school attendance and could collaborate with healthcare systems to provide integrated systems of support to address complex needs for children with disabilities and health concerns.” (Arrow pointing right) Small Citation
What This Suggests Long COVID in children may have meaningful downstream impacts on learning and social development because it’s linked to both functional limitations and higher illness-related absenteeism. Authors propose considering school accommodations (e.g., reduced workload, rest periods), analogous to supports used for conditions like concussion or ADHD. (Arrow pointing right) Small Citation
Key finding: long COVID is linked to much more illness-related school absence Missing >30 days for illness/injury in the past year: 10.7% with Long COVID vs. 1.5% without Long COVID. Illness-related chronic absence (>18 days): 13.9% with Long COVID vs 3.5% without Long COVID To reduce confounding from acute COVID-related school absences, the authors also analyzed a subset of 4,587 children with prior COVID-19. In this prior-COVID subsample, illness-related chronic absence was 13.9% (ever long COVID) vs 4.9% (never long COVID, but prior COVID). Having Long COVID at some point was associated with 2.5x the odds of illness-related chronic absenteeism compared with never having had Long COVID. (Arrow pointing right) Small Citation
Key finding: Long COVID is linked to higher rates of functional limitations Compared with children who never had Long COVID, those who ever had Long COVID showed higher prevalence in multiple domains, including: Learning difficulty: 19.8% vs 10.4% Difficulty concentrating: 14.3% vs 7.7% Difficulty with memory: 18.3% vs 8.6% Weekly/daily depression: 18.9% vs 6.2% (Arrow pointing right) Small Citation
Description of the Study: Using a nationally representative US survey of 11,057 US children aged 5–17 years, the authors asked whether children with Long COVID report more functional limitations and more illness-related chronic school absenteeism than peers without Long COVID. Authors classified illness-related chronic absenteeism, according to the US Department of Education, as missing 18 or more school days in the past 12 months due to illness or injury. The authors used the Washington Group/UNICEF Child Functioning Module (24 questions) for ages 5–17 years, covering multiple functional domains. Long COVID was defined as children having any symptoms lasting >3 months that they did not have before having COVID-19. (Arrow pointing right) Small Citation
Recent Study: Long COVID among school-aged children associated with chronic absenteeism. Authors: Nicole D. Ford, Regina M. Simeone, Caroline Pratt, and Sharon Saydah (Arrow pointing right) Small Citation
Long COVID may be affecting how some children learn and participate in school. In a survey of 11,000+ U.S. kids, those with LC were 2.5× more likely to experience chronic illness-related absenteeism and reported higher rates of learning, memory, & concentration difficulties. doi.org/10.3201/eid3...
What a beautiful guide, and feels like such a gift during Long COVID Awareness month. For myself I’ve had the best experience with Low Dose Naltrexone, Cetirizine, and all the management strategies they included under Lifestyle. Looking forward to having a detailed read
The other US-based clinic doing public testing for severe microclots is @rthm.bsky.social with @jencurtinmd.bsky.social and team, which serves a handful of states in the US www.rthm.com/resources/bl...
Enormous thank you to @patientled.bsky.social and @rthm.bsky.social for putting this together. It’s an excellent guide to off label meds for treating #longcovid and associated conditions: www.rthm.com/treatmentgui...
We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together.
The guide focuses on 24 medications, but includes a few other interventions for breadth /1
RTHM just made supplements a whole lot easier.
You can now order high-quality supplements directly through RTHM, shipped straight from the manufacturer, at 25% off!
Check out our HIPAA-compliant intelligence platform for supplement and treatment suggestions.
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RTHM’s Take: “This is a concerning study that shows Long COVID (and any COVID infection) may heighten the risk of ADRD, and in some cases accelerate disease progression. This study should sound a public health alarm that without effective treatments and better infection prevention, we may experience a worsening wave of neurodegenerative conditions and cognitive decline in the years to come.” “— Jennifer Curtin, MD, RTHM Co-Founder
Study Author Conclusions: “Results are consistent with the view that changes in pTau-181 inconsistent with normal ageing may be common among participants with N-PASC. Indeed, more than half of participants with N-PASC experienced a ≥20% increase in absolute levels of pTau-181 relative to pre-COVID-19 levels… Among participants with N-PASC who exhibited pTau-181 increases ≥20% relative to pre-COVID levels, 45.1% expressed pTau-181 levels above an established cutoff to identify ADRD (Alzheimer’s Disease and Related Dementias) “Intriguingly, in this study we found that evidence of increased pTau-181 was associated with increases in AB40/42 ratios consistent with a pTau-mediated ADRD. These findings support pTau-181 as a valuable longitudinal biomarker for N-PASC and highlight the potential need for early, tau-targeted interventions to mitigate progressive cognitive decline.” (Arrow pointing right) Small Citation
What This Suggests The authors connect findings to a broader hypothesis that COVID-related neuroinflammation/microglial activation could contribute to tau phosphorylation/spread, potentially accelerating latent vulnerability. Patients who develop N-PASC after COVID-19 might share certain clinicopathological features with Alzheimer's Disease, however the authors explicitly caution that replication with neuroimaging/brain measures is needed to know whether plasma pTau‑181 elevations reflect cerebral tauopathy in N‑PASC. The authors suggest pTau‑181 could potentially help prognosticate neurological Long COVID—especially for symptoms persisting beyond ~1.5 years—but emphasize the need for long-term follow-up to see whether pTau‑181 continues rising or predicts later cognitive impairment. (Arrow pointing right) Small Citation
Amyloid Signals Moved With pTau‑181 in a Subset Among people with N‑PASC, ≥20% pTau‑181 increases were linked to a much higher chance of a ≥20% increase in Aβ40/42 ratio and higher risk of a ≥20% rise in IAB. Authors frame this as potentially concerning because pTau‑181 + amyloid ratio changes are a pattern often discussed in Alzheimer’s disease biology—though this study does not diagnose dementia or measure brain pathology directly. Time Course Matters: pTau‑181 Elevation Bigger After 1.5 years of Symptoms Average pTau‑181 elevation was reported as ~14.6% within ≤1.5 years since infection, but ~56.5% among those assessed >1.5 years after symptom onset (suggesting a possible lag or progression). GFAP decreases were more pronounced earlier (≤1.5 years) than later.
Symptom cluster tracked with pTau‑181 rises A ≥20% pTau‑181 increase was associated with higher risk of: “Any central nervous system” symptoms (aRR ~1.31) Loss of taste/smell (aRR ~1.30) Anxiety/depression (aRR ~1.26) Brain fog (aRR ~1.22) Muscle weakness (aRR ~1.30 (Arrow pointing right) Small Citation
Before COVID: Evidence of Higher Amyloid Burden Helped Predict N‑PASC Individuals who developed N-PASC had higher Aβ40/42 ratios, NfL, and IAB values, before developing COVID-19. Interpretation offered by authors: this pattern could reflect pre-existing vulnerability (amyloid-related biology) that may make some individuals more susceptible to neurologic sequelae. Amyloidosis often requires a secondary neuropathology to elicit the most severe symptomatology Authors note that if these findings indicate that cerebral amyloidosis is present, even in its mildest forms, then the post-COVID-19 increase in pTau-181 may correspond to the onset of pathological Alzheimer's disease. (Arrow pointing right) Small Citation
Key Finding: After COVID, pTau‑181 rose sharply in N‑PASC, but not in controls Main longitudinal result: pTau‑181 increased ~59% after COVID-19 onset in the N‑PASC group, relative to matched controls. About 58.6% of N‑PASC participants had more than 20% increase in pTau‑181 from their own pre‑COVID levels. N-PASC was associated with changes in pTau-181 that exceeded cutoffs used in studies of ADRD (Alzheimer’s Disease and Related Dementias). In contrast, GFAP and NfL showed post‑COVID decreases in the N‑PASC group versus never‑COVID controls. (Paradoxical finding that could be from neuroimmune system repairing itself, or from neuroinflammation restricting glymphatic clearance.) Among participants infected with COVID-19, there was an increase in IAB (biomarker for Alzheimer's risk) when compared to never-infected controls (Arrow pointing right) Small Citation
Description of the Study: The authors studied a prospective cohort of essential workers with paired plasma samples (one collected before the pandemic and one after) to test whether neurological Long COVID (N‑PASC) tracks with changes in Alzheimer’s-linked blood biomarkers. Participants with N‑PASC (n=227) were matched 1:1 to controls (n=227) who either had COVID without N‑PASC (n=124) or had no COVID by follow-up (n=103) N‑PASC required ≥1 neurological symptom (e.g., loss of taste/smell, brain fog, dizziness/vertigo, tinnitus, headache, balance issues) emerging within 3 months of infection and persisting more than 3 months. N‑PASC was assessed on average ~2.7 years after symptom onset. They measured neurological biomarkers well-established to correlate with neurodegeneration: pTau‑181, GFAP, NfL, Aβ40, Aβ42; plus derived measures like Aβ40/42 ratio and an inverse mean amyloid burden (IAB) metric. (Arrow pointing right) Small Citation
New Study: Patients who develop Long COVID have increased amyloid biomarkers consistent with Alzheimer's Disease. Authors: Xiaohua Yang, Ashley Fontana, Sean A.P. Clouston, Benjamin J. Luft (Arrow pointing right) Small Citation
A study found that people with neurological Long COVID show blood biomarker changes linked to brain cell stress & Alzheimer’s biology. Tau and amyloid levels rose after infection and tracked with brain fog and cognitive symptoms, suggesting measurable neurological effects. doi.org/10.1016/j.eb...