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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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long covid

  1. G

    Researchers discover underlying cause of brain fog linked with long COVID

    Researchers discover underlying cause of brain fog linked with long COVID. Study Title: Blood–brain barrier disruption and sustained systemic inflammation in individuals with long COVID-associated cognitive impairment (Nature Neuroscience) MedicalExpress.com: "The findings reported by the...
  2. SpinachHands

    Diagnosed with long COVID instead of ME- will this harm chances of treatment?

    My partner's appointment with the local NHS ME/CFS "specialist" clinic finally came around. (None of the doctors are actually ME specialists, just a team of physios, occupational therapists and dieticians.) I did the appointment on their behalf (with their consent) as they are too unwell. My...
  3. SWAlexander

    NIH to bolster RECOVER Long COVID research efforts through infusion of $515 million

    Excerpt: Four years after the COVID-19 pandemic began, Long COVID remains an unsolved, complex and urgent healthcare crisis. According to the Centers for Disease Control and Prevention, 1 in 9 adults in the United States who have ever had COVID-19 continue to experience Long COVID with a wide...
  4. L'engle

    Long Covid and brain scans

    An article that focuses on brain changes in Long Covid. Refers to several studies. It's a nice combination of personal case studies and discussion of research. https://www.statnews.com/2023/02/16/the-haunting-brain-science-of-long-covid/ I'm too exhausted to really add more. If it's...
  5. Cipher

    Impact of extended-course oral nirmatrelvir/ritonavir (Paxlovid) in established Long COVID: Case series and research considerations (Cohen et al.2023)

    Full-text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10543503/ According to this table, 7 of the 13 patients in the case series experienced short-term improvements from an extended Paxlovid course, while 5 of the 13 patients experienced sustained improvements.
  6. O

    The kynurenine pathway relates to post-acute COVID-19 objective cognitive impairment and PASC

    The kynurenine pathway relates to post-acute COVID-19 objective cognitive impairment and PASC Objective To determine the prevalence and natural history of post-acute COVID-19 objective cognitive impairment and function, and their relationship to demographic, clinical factors, post-acute...
  7. Hip

    Cognitive FX clinic say neurovascular coupling dysfunction causes ME/CFS; all very interesting, but they end up prescribing CBT and other nonsense!

    The Cognitive FX clinic in Utah has some interesting ideas about the possible cause of long COVID, but disappointingly, their treatment seems to involve the same old discredited cognitive behavioural therapy (CBT). Cognitive FX was founded in 2014 by Dr Allen and others in order to treat...
  8. Hip

    Several long COVID patients report improvements within days from antihistamines

    Several long COVID patients report substantial improvements within days from the first generation antihistamine diphenhydramine (Benadryl) 25 mg before bed. See: Benadryl seems to have helped me The “best” I feel is when I take diphenhydramine (Benadryl) Back to Benadryl cause it’s the only...
  9. junkcrap50

    Amsterdam scientists find an enzyme (IDO2) that could be the culprit of #LongCovid: Prolonged IDO2 activity & associated cellular stress in PASC.

    They found the IDO2 enzyme in "insane amounts" in Long Covid patients in all kinds of cells causing "a kind of collective suicide" as well as impaired mitochondrial function and Krebs Cycle dysfunction. They say it's clear that IDO2 continues to rage after the virus is defeated and IDO1...
  10. Hip

    Lots of long COVID patients reporting major improvements with lactoferrin

    A number of long COVID patients are reporting substantial improvements from the supplement lactoferrin. See these threads reporting major benefits (the brand and type used is indicated): Huge improvements with lactoferrin — Jan 2024 apolactoferrin Incredible recovery with lactoferrin! — Aug...
  11. Hip

    Pfizer's 7 hypotheses on the possible causes of long COVID

    Pfizer’s 7 Hypotheses on the Possible Causes of Long COVID Viral Persistence Studies have shown that, for some people, SARS-CoV-2 RNA may remain in the body well after the initial infection, resulting in the virus not being fully cleared and potentially causing chronic symptoms to persist...
  12. SWAlexander

    Effects of COVID-19 and vaccination on the human immune system: cases of lymphopenia and autoimmunity

    SARS-CoV-2 infection and the antigenic challenge induced by vaccinations against this pathogen elicit a diverse immunological response in humans. A variable immune response is expected during infection, but the ability of SARS-CoV-2 to evade host immunity and induce a deleterious effect on...
  13. Hip

    Metformin taken during acute COVID reduces risk of long COVID by 41%. ME/CFS often gets worse after COVID, so this drug may protect from such decline

    A study found that a two week course of metformin given within 3 days of testing positive for an acute COVID infection led to 41% fewer long covid diagnoses over the following 10 months compared with people who had taken placebo. For participants who started metformin less than 4 days after...
  14. X

    encouraging interview with immunologist Akiko Iwasaki

    This made my month. https://www.theguardian.com/society/2023/may/27/immunologist-akiko-iwasaki-we-are-not-done-with-covid-not-even-close For those of you too tired to read the whole thing: "I always have in the back of my mind – how can these insights from long Covid help people with ME/CFS...
  15. SWAlexander

    **EXCLUSIVE** Biomarker Breakthrough?

    Listen to Bhupesh Prusty interview in the link. https://www.tlcsessions.net/episodes/episode-58-breakthrough-biomarker- For the past three years we have suffered with a myriad of over 200 symptoms. Every expert that we have spoken to has either treated the symptoms whilst acknowledging the...
  16. Hip

    Long COVID "brain numbness" versus ME/CFS brain fog

    Since catching COVID just over a year ago and developing some long COVID on top of existing ME/CFS, I've found that whilst ME/CFS gives me brain fog, long COVID for me seems to produce what you might call "brain numbness". This brain numbness feels like having your brain mildly anaesthetised: I...
  17. O

    Endothelial dysfunction in Long-Covid measured by RVA correlates with symptom severity and inflammation

    Measurements and main results PCS patients exhibit persistent endothelial dysfunction (ED), as indicated by significantly lower venular flicker-induced dilation (vmax; 3.42% ± 1.77% vs. 4.64 % ± 2.59%; p = 0.02), narrower central retinal artery equivalent (CRAE; 178.1 [167.5 - 190.2] vs. 189.1...
  18. P

    What happened to covid? and the research into long covid... 2023 feels different

    Doesn't 2023 feel wholly different with respect to covid? While the country was obsessed with this virus for almost 3 years, especially that first year with lockdowns and 24/7 news coverage, etc, 2023 just has a very different feel. On some days I even forget about it. Offices are calling us...
  19. Hip

    Long COVID ME/CFS patient goes into remission after 3 weeks on the antiviral sofosbuvir

    A long COVID patient on Reddit (Warm_Camera_7052) with ME/CFS symptoms reports that after he took the antiviral sofosbuvir for just 3 weeks, this put his illness into full remission. He has only been in remission for one month though, so relapse remains a possibility. His brother with LC...
  20. C

    Generalisable long COVID subtypes: findings from the NIH N3C and RECOVER programmes (Reese et al, 2022)

    Summary Background Stratification of patients with post-acute sequelae of SARS-CoV-2 infection (PASC, or long COVID) would allow precision clinical management strategies. However, long COVID is incompletely understood and characterised by a wide range of manifestations that are difficult to...
  21. SWAlexander

    The Draft Report by the Institute for Quality and Efficiency in Healthcare Does Not Provide Any Evidence That Graded Exercise Therapy and Cognitive Be

    Abstract The German Institute for Quality and Efficiency in Healthcare (IQWiG) recently published its draft report to the government about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The IQWiG concluded that graded exercise therapy (GET) and cognitive behavioral therapy (CBT)...
  22. SWAlexander

    Long COVID: major findings, mechanisms and recommendations

    It is a very extensive study. Abstract Long COVID is an often debilitating illness that occurs in at least 10% of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections. More than 200 symptoms have been identified with impacts on multiple organ systems. At least 65 million...
    • SWAlexander
    • Thread
    • autoimmunity dysautonomia excessive blood clotting long covid me/cfs neuroinflammation vascular and clotting abnormalitie viral persistence
    • Replies: 1
    • Forum: Long COVID and Coronavirus
  23. D

    ME/CFS... then Covid-19, then Long Covid

    My daughter was diagnosed with ME/CFS as a teenager. She spent several years mostly bedbound (dark room, headphones, etc) doing virtual school to the extent possible. She is now a young adult. She figured out how to have a job and go part time to college remote - has lived with it for many...
  24. C

    Anthony Komaroff research presentation (video) for MassME 2022 annual meeting

  25. C

    Long-COVID post-viral chronic fatigue and affective symptoms are associated with oxidative damage, lowered antioxidant defen… (Al-Hakeim et al, 2022)

    Long-COVID post-viral chronic fatigue and affective symptoms are associated with oxidative damage, lowered antioxidant defenses and inflammation: a proof of concept and mechanism study Abstract The immune-inflammatory response during the acute phase of COVID-19, as assessed using peak body...
  26. C

    Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious… (van Campen & Visser, 2022)

    Orthostatic Intolerance in Long-Haul COVID after SARS-CoV-2: A Case-Control Comparison with Post-EBV and Insidious-Onset Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients Abstract Background: As complaints of long-haul COVID patients are similar to those of ME/CFS patients and as...
    • Consul
    • Thread
    • ebstein barr virus frans visser linda van campen long covid long haul covid mecfs orthostatic intolerance visser
    • Replies: 1
    • Forum: Long COVID and Coronavirus
  27. frozenborderline

    Long covid has forced a reckoning for one of medicines most neglected diseases

    https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/ An article by Ed Yong, about how long covid is forcing people to address the situation with me/cfs. I'm not sure he's right about that but it's worth a read and he is getting our...
  28. Hip

    Is there a legal basis by which ME/CFS researchers can claim the same funding that long COVID scientists get (Congress awarded LC $1.15 billion)?

    The US Congress awarded $1.15 billion in funding over four years to the NIH for research into long COVID (ref: here). So that's about $250 million per year of long COVID research funding. Whereas at present, the NIH only gives $17 million a year for research funding in ME/CFS. $17m is a very...
    • Hip
    • Thread
    • funding grants legal long covid
    • Replies: 16
    • Forum: Fundraising
  29. frozenborderline

    MEAction protest at whitehouse

    I'm surprised to see this hasn't been discussed more. And I'm disappointed to see so little coverage. These protestors risked major crashes and arrest to do this. And they weren't rewarded with great media coverage or even a lot of support from those of us who couldn't make it, on social media...
  30. C

    Lowered Quality of Life in Long COVID Is Predicted by Affective Symptoms, Chronic Fatigue Syndrome, Inflammation and Neuroimmuno... (Maes et al, 2022)

    Lowered Quality of Life in Long COVID Is Predicted by Affective Symptoms, Chronic Fatigue Syndrome, Inflammation and Neuroimmunotoxic Pathways Abstract The physio-affective phenome of Long COVID-19 is predicted by (a) immune-inflammatory biomarkers of the acute infectious phase, including...