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  1. RedFox

    Protocol RECOVER Treatment Study: Paxlovid for long Covid

    The problem is that nirmatrelvir, the drug that stop the virus from reproducing, is broken down by the liver very quickly. The ritonavir just services to slow down metabolism of the drug by keeping that liver enzyme "busy." Purposely creating drug interactions like this has been heavily...
  2. RedFox

    Protocol RECOVER Treatment Study: Paxlovid for long Covid

    My opinion: I'm not sold on viral persistence, so my expectations are modest. But this trial is rigorous! It should be big enough to deliver definitive results. It might be the largest treatment trial on post-viral conditions ever. (PACE enrolled 641 for reference, barely a third as many.) I'm...
  3. RedFox

    Protocol RECOVER Treatment Study: Paxlovid for long Covid

    The RECOVER Initiative is doing a trial on Paxlovid for long Covid. Here's the listing on ClinicalTrials.gov: SARS CoV-2 Viral Persistence Study (PASC) - Study of Long COVID-19 (PASC) Highlights: Double-blind multi-center trial in the US 1700 participants They'll take the drug for 15 days...
  4. RedFox

    News from France

    I get the impression that France isn't good with chronic conditions. Some years back, I heard of doctors in France trying to psychologize autism.
  5. RedFox

    Experimental Monoclonal Antibodies Show Promise Against Epstein-Barr Virus

    I'd like to see a study on EBV and ME similar to the MS one. Maybe EBV is a requirement to get ME as well.
  6. RedFox

    Series of Guardian articles on Long Covid, October 2022

    You're spot on here. 277k disabled by LC. 210k didn't visit a LC clinic, but those who did got very little. We need to research treatments badly.
  7. RedFox

    The Interactive Effects of Post-Traumatic Stress Symptoms and Breathlessness on Fatigue Severity in Post-COVID-19 Syndrome 2022 Harenwall et al

    So close, yet so far. I have ME and PTSD. Having flashbacks when your body is frail, trying to regulate extreme emotions when you're cognitively impaired, or having nightmares when a good night's sleep is barely restful, is freaking exhausting. But they're painting with too broad a brush...
  8. RedFox

    Protesters So Ill, They Couldn’t Get Arrested, NYT

    Yes, usually articles will get one or two basic things wrong about ME and PEM. But she absolutely nailed it here. The only unclear thing was this sentence: This could read as "her PEM was so bad she couldn't think clearly, let alone do more complex cognitive tasks," but some people might read...
  9. RedFox

    Protesters So Ill, They Couldn’t Get Arrested, NYT

    There's detail on how the protest went that I haven't seen anywhere else. Embarrassingly, they couldn't even get the police to arrest them. Despite laying down in front of the White House, and blocking a couple streets, and telling a cop they were engaging in civil disobedience, the police just...
  10. RedFox

    What are the tests that do currently exist?

    As I understand it, developing a biomarker is much harder than finding some chemical whose levels are different in healthy vs pwME. To publish a paper, you just need to show there's a statistically significant difference between healthy people and pwME. To develop a biomarker, you have to prove...
  11. RedFox

    Veterans Association Guidebook on Long COVID 2022 Suran

    Umm...it's kind of okay-ish, but it says weird things here and there. Let's take balanced view, and analyze what's good and what's bad. The good: Recommends measuring lying vs standing HR/BP to test for OI/POTS (Pg. 8) Mentions PEM in the fatigue section: "Veteran may experience...
  12. RedFox

    Norway: Opinion piece on "Facts and myths about ME" by Reme, Flottorp and Wyller

    Are you kidding me?! Burnout?! People with burnout have PEM?! I'm autistic, and like many autistic people, I've experienced extreme burnout in the past. To the extent my functioning declined for weeks to months. The experience was totally different from ME. Notably, my physical functioning was...
  13. RedFox

    COVID-19: A collision of complement, coagulation and inflammatory pathways, 2020, Chauhan et al

    I'm not sure how relevant this is, but my mom's cousin died from ANCA vasculitis this summer. For decades, it was assumed she had lupus. After she got Covid-19, her health went downhill rapidly. She had multiple hospitalizations and intubations due to pneumonia in rapid succession. Finally, the...
  14. RedFox

    Cardiovascular disease and mortality sequelae of COVID- 19 in the UK Biobank, 2022, Raisi-Estabragh et al.

    27.6 is among the highest hazard ratios I've ever seen in a scientific paper.
  15. RedFox

    News from Australia

    They're making many changes, most of which are not related to ME. But the changes related to ME and fatiguing conditions (mostly on page 6) are significant:
  16. RedFox

    Daily Telegraph "What Long Covid might tell us about Chronic Fatigue Syndrome" article

    I think we're a bit caught up on use of the term relapsing/remitting. There's two possible interpretations of this phrase: The first is short-term variations in symptom severity driven by changes in the degree of PEM you're experiencing. The article appears to use it in this sense. Sometimes...
  17. RedFox

    Ampligen in Phase 2 Clinical Study for the Treatment of Post-COVID Conditions

    Provides more detail that what was announced in the media. A few things stick out. The study will only run for 12 weeks or ~3 mo. The main outcome measure is the Promis Fatigue scale. I haven't found a full version online, but a short version is available. Patients must meet the Fukuda criteria...
  18. RedFox

    Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation, 2021, Jason

    $36-51B per year, and just in the US. Or roughly $30-40k per person per year, mostly in lost wages. We can present this in multiple ways to get a better feel of the scale. It's 0.17% or roughly 1/600 of US GDP. If the average person with ME suffers for 40 years, that's $1.2-1.6 million per...
  19. RedFox

    Experiences of carers of youth, adult children and spouses with ME/CFS 2022 Baken et al

    You're right that this study probably just states the obvious, but sometimes getting into a scientific paper is the hard part. Very good idea for future research. To what extent are carers swayed by BPS beliefs? I wonder if it depends on how long the person with ME was sick, or their social...
  20. RedFox

    Population-Based Evaluation of Postacute Coronavirus Disease-2019 (COVID-19) Chronic Sequelae in Patients Who Tested Positive 2022 Goldhaber et al

    This was a survey of 999 people in California who got Covid. What they found: 46.3% had at least one symptom they believed was definitely or maybe caused by Covid. 34.7% missed work or school due to what they thought was long Covid 66.2% reported that their daily activities were affected 56.9%...
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