• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

me/cfs

  1. TinaYesen

    Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection

    New study published April 17th, 2024. Improvement of immune dysregulation in individuals with long COVID at 24-months following SARS-CoV-2 infection Here's my immediate questions and serious concerns with this publication: Why did they only study patients with "mild to moderate" Long...
  2. SWAlexander

    Brain functional connectivity in people with ME/CFS

    Key findings Detailed MRI scans were used to investigate communication between different areas of the brain – or functional connectivity – in people with ME/CFS. Functional connectivity was impaired between areas of the brain involved in movement, cognitive function, sensory processing, the...
  3. SWAlexander

    NIH Intramural ME/CFS Study Q&A

    The manuscript on ME/CFS published in Nature Communications provides irrefutable evidence for the biological nature of the disease. Evidence shows that it is a multi-systemic disease. Major findings in support of this are: evidence of persistent immune activation in the blood and cerebrospinal...
    • SWAlexander
    • Thread
    • altered lipids cerebrospinal fluid me/cfs multi-systemic disease neurotransmitter abnormalities oxidative stress in muscles
    • Replies: 1
    • Forum: Latest ME/CFS Research
  4. 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...
  5. A

    MCAS activated by Long COVID or by Vac: CRITERIA FOR CLINICAL DIAGNOSIS. Also for ME/CFS, Fibromyalgia, MCS, POTS, EDS, RLS,SNF, Autoinmune Diseases

    MCAS (episodes of symptoms of histaminosis/anaphylaxis) activated by Long COVID or MIS-C or by Post-Vax Syndrome: CRITERIA FOR CLINICAL DIAGNOSIS. https://www.researchgate.net/publication/377384635 Also for ME/CFS, Fibromyalgia, MCS, POTS, Dysautonomia, Ehlers-Danlos Syndrome (EDS), Small...
  6. SWAlexander

    Subcortical and default mode network connectivity is impaired in myalgic encephalomyelitis/chronic fatigue syndrome

    Introduction: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic condition with core symptoms of fatigue and cognitive dysfunction, suggesting a key role for the central nervous system in the pathophysiology of this disease. Several studies have reported altered...
  7. SWAlexander

    Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients

    It is time that we stop accepting ME/CFS as a psychosomatic illness. Abstract Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous...
  8. SWAlexander

    A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis

    Abstract Of those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ~ 10% develop the chronic post-viral debilitating condition, long COVID (LC). Although LC is a heterogeneous condition, about half of cases have typical post-viral fatigue with onset and symptoms that...
  9. 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...
  10. SWAlexander

    Different risk factors distinguish myalgic encephalomyelitis/chronic fatigue syndrome from severe fatigue

    Sorry, if this is already posted. Abstract Fatigue is a common reason that patients seek medical care. Only a fraction of these patients meet criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). To determine if ME/CFS is just a more extreme form of fatigue, or a...
  11. SWAlexander

    Stress-Induced Transcriptomic Changes in Females with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Reveal Disrupted Immune Signatures

    Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex multi-organ illness characterized by unexplained debilitating fatigue and post-exertional malaise (PEM), which is defined as a worsening of symptoms following even minor physical or mental exertion. Our...
  12. SWAlexander

    ME/CFS, FM, RA, SS, POTS, PVACS, Lyme:

    This is the first complete research that confirms my long-standing theory. This is a long paper, though reading is worth it. ME/CFS, FM, RA, SS, POTS, PVACS, Lyme: THERAPEUTIC TEST AND FIRST TREATMENT REGIME, WITH FIBRINOLYTICS AND FAMOTIDINE FOR PATIENTS WITH CHRONIC FATIGUE AND/OR PAIN TO...
  13. 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
  14. SWAlexander

    Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis

    Abstract The purpose of this article is to review the evidence of similar symptomatology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-acute sequelae of SARS-CoV-2 infection (PASC). Reanalysis of data from a study by Jason comparing symptom reports from two groups of...
  15. SWAlexander

    Orthostatic Intolerance after COVID-19 Infection: Is Disturbed Microcirculation of the Vasa Vasorum of Capacitance Vessels the Primary Defect?

    Abstract Following COVID-19 infection, a substantial proportion of patients suffer from persistent symptoms known as Long COVID. Among the main symptoms are fatigue, cognitive dysfunction, muscle weakness and orthostatic intolerance (OI). These symptoms also occur in myalgic...
  16. SWAlexander

    Genetic risk factors for ME/CFS identified using combinatorial analysis

    Published: 14 December 2022 Abstract Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease that lacks known pathogenesis, distinctive diagnostic criteria, and effective treatment options. Understanding the genetic (and other) risk factors...
  17. SWAlexander

    Muscle sodium content in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Abstract Background Muscle fatigue and pain are key symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Although the pathophysiology is not yet fully understood, there is ample evidence for hypoperfusion which may result in electrolyte imbalance and sodium overload in...
  18. SWAlexander

    ME/CFS, Fibromyalgia, and Long COVID – the “Metabolic Derangement” Diseases?

    I´m very glad that Cort Johnson published this very good article. At the same time it is very frustrating that doctors in Germany refuse (for whatever reason) to test VLCFA even though I delivered previous results (tested in USA 2018) for elevated phytanic acid. I mentioned " New article on...
  19. SWAlexander

    PATIENT-LED RESEARCH COLLABORATIVE ANNOUNCES $4.8 MILLION IN BIOMEDICAL RESEARCH AWARDS FOR LONG COVID AND ASSOCIATED CONDITIONS

    The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions. This fund and awarded projects are distinctly meaningful for four major...
  20. frozenborderline

    Indigenous people of siberia tolerate tick borne infections better, have more resilience

    https://drive.google.com/file/d/1BBLa4FTv3LgBoZJNOtU9RQeraZ__026G/view?usp=drivesdk Interesting. Could validate environmental/dual factor theory of @Hip or it could be their microbiome or some epigenetic factor.
  21. frozenborderline

    [Indie Band] Belle and Sebastian Frontman: "Living with ME makes me feel like a non person "

    https://www.independent.co.uk/news/uk/myalgic-encephalomyelitis-scottish-parliament-scotland-msps-holyrood-b2177301.html He's also an OMF ambassador. He's one of one of most prominent famous people with our illness. Albeit more mild than a lot of us bedridden folks. But apparently early on he...
  22. SWAlexander

    Autoantibody determination in chronic fatigue syndrome (CFS)

    This is a google auto translation: Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is a common and severe multisystem disease. A defined cause could not be found so far. What is clear, however, is that dysregulation of the immune system, the hormone system, the...
  23. SWAlexander

    1934 Los Angeles atypical polio outbreak

    Thank you for pointing it out. Finally!!! I have been saying for years PPS is (part of) ME/CFS. I was laughed at by every doctor telling me "you have no medical credentials." But, I have had all related symptoms since the age of 5 y old. The 1934 Los Angeles County General Hospital epidemic...
  24. 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...
  25. SWAlexander

    New study links 14 genes to ME/CFS

    A study has analysed existing genetic data in a new way to link 14 genes to ME/CFS and identify many patient subgroups. If the new approach pans out, it could transform ME research and turbocharge the development of treatments. Paper: Genetic Risk Factors for ME/CFS Identified Using...
  26. SWAlexander

    Researchers say they have found a link in the pathology between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

    Article: Researchers say they have found a link in the pathology between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Key points: Griffith University researchers say their findings could help to treat those suffering from long COVID A woman with chronic fatigue...
  27. frozenborderline

    NIH misallocating funds and moving slow on Long covid research

    https://www.statnews.com/2022/03/29/nih-long-covid-sluggish-study/
  28. frozenborderline

    Many seasons in hell: a podcast on living with post infectious illnesses

  29. frozenborderline

    Looking for podcast participants for my ME/CFS related podcast

    looking for podcast participants Potentially upsetting Looking for people to be interviewed on a podcast: The most interesting things I'd like to talk about ir type of guests : 1. People who have had some kind of experience with environmental factors in their illness People who have done some...
  30. gauche

    Diagnostic for reduced calcium in cells

    Hey folks, As we know, there's a lot of chatter about links between ME/CFS and long COVID. However, today I was surprised to read that a research team in QLD are looking into whether their ME/CFS diagnostic test (yes, diagnostic test) and treatment (double yes) will also work for long COVID...