• 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.

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  1. Pyrrhus

    Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications (Mirin et al., 2022)

    Updated ME/CFS prevalence estimates reflecting post-COVID increases and associated economic costs and funding implications (Mirin et al., 2022) https://doi.org/10.1080/21641846.2022.2062169 From the amazing Art Mirin, Mary Dimmock, and Lenny Jason: (spacing and emphasis added)
  2. Pyrrhus

    Predictors for Developing Severe ME/CFS following acute EBV (Jason et al., 2022)

    Predictors for Developing Severe ME/CFS following Infectious Mononucleosis (Jason et al., 2022) https://www.rehabiljournal.com/articles/predictors-for-developing-severe-myalgic-encephalomyelitischronic-fatigue-syndrome-following-infectious-mononucleosis.html A study from Lenny Jason that...
  3. Pyrrhus

    Nationwide epidemiological characteristics of chronic fatigue syndrome in South Korea (Lim et al., 2021)

    Nationwide epidemiological characteristics of chronic fatigue syndrome in South Korea (Lim et al., 2021) https://doi.org/10.1186/s12967-021-03170-0 It would appear that ME/cfs has been under-diagnosed in South Korea, which is not surprising given the cultural stigma. The good news is that the...
  4. C

    19th century pandemic with long-covid-ME like symptoms, possibly caused by a now-seasonal coronavirus

  5. Martin aka paused||M.E.

    Twitter Survey on infectious onset

    Hey folks, I did a (not representative) Twitter survey. I wanted to get an overview on how many cases of ME had an (symptomatic) infectious onset. These are the results, I thought I share them with you (yes I know that the results have their limitations) 365/500 had a known infectious onset...
  6. Pyrrhus

    Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Chu et al., 2019)

    Not new, but an important epidemiological paper: Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Chu et al., 2019) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/ Lily Chu, Ian J. Valencia, Donn W. Garvert, and Jose G. Montoya Excerpt:
  7. nerd

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    In case you aren't aware of the concept of the Original Antigenic Sin, it's based on evidence how the immune system shapes based on the first childhood infections and that this dominates our lifelong immunity. So there isn't really a scientific consensus yet if this is something positive or...
  8. Hip

    Epidemiology and Environmental factors in ME/CFS

    MODERATOR'S NOTE: THE FIRST 33 POSTS IN THIS THREAD HAVE BEEN COPIED OR MOVED FROM THE THREAD Any recent MECFS outbreaks? If you look at the list of historical outbreaks of ME/CFS-like illnesses, you find in some cases the outbreak was very localized (to a building, institution or village)...
  9. B

    I have had CFS for 6 years and my wife just developed it too

    Hi everyone, This feels surreal to type. And I have actually been in denial for a while. But I can no longer deny that my wife now also has CFS. Her illness mirrors mine to a T. We have seen every doc in every specialty, virtually all the tests come back normal, as they did for me. We share so...
  10. Hip

    New study finds vast majority of diseases have only a very small genetic contribution of 5% to 10% at most (so much for 23andme testing)

    A new large meta-analysis has shown that for the vast majority of diseases, genes only play a very minor role in determining whether you get the disease or not. For the majority diseases, this study found the genetic contribution to disease development is only 5% to 10% at most. Professor David...
  11. Murph

    Any recent ME/CFS outbreaks?

    According to ME-Pedia the last outbreak was in 1996. Is this really true? https://me-pedia.org/wiki/List_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome_outbreaks That is well over two decades ago now. Almost a quarter century. In the 1950s there were dozens of recorded outbreaks...
  12. BeautifulDay

    My poll about family members with ME. I have a small sample showing a pattern. I need more data to confirm.

    I came across a pattern where a certain group of people with ME had a 100% chance of something. Statistically, they should have had a 5% chance. My sample was small and I presume with a larger sample, it will go below 100%. Yet, even if it proved to be a 10% (double the realistic odds ratio)...
  13. pibee

    ME in families

    Is this just my impression or it really is that ME has bigger gene/hereditary component than "other" autoimmune diseases? In my family we all have Hashimoto (mom,sister,myself and i'm quite certain my grandmom had too), as for ME, i have most pronounced, but based on all my moms descriptions of...
  14. Kati

    Incidence of ME/cfs in a large prospective cohort of U.S nurses

    Incidence of myalgic encephalomyelitis/chronic fatigue syndrome in a large prospective cohort of U.S. nurses http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1323576 Author: Natalia Palacios (Harvard Public Health), Kathryn Fitzgerald (John Hopkins), Anthony Komaroff (Harvard School...
  15. JaimeS

    Prevalence of Chronic Fatigue Syndrome and Chronic Fatigue Within Families of CFS Patients

    It doesn't look as though this older study has been posted here before. I was interested because #MEAction's survey results indicate that 28% of respondents also had family members with ME or CFS. However, we did not stipulate that they be blood relatives. This study appears to support that...
  16. T

    Prevalence of CFS in Canada.

    http://www.statcan.gc.ca/daily-quotidien/150617/t002b-eng.htm Table 2 Canadians reporting a diagnosis of fibromyalgia, chronic fatigue syndrome, or multiple chemical sensitivities, by sex, household population aged 12 and older http://www.statcan.gc.ca/daily-quotidien/150617/dq150617b-eng.htm
  17. Hip

    Corticosteroids such as prednisone given during an acute viral infection may trigger ME/CFS

    Dr John Chia has noted that corticosteroids when given during an acute viral infection seems to be a "recipe" that can often precipitate ME/CFS. That is to say, he discovered a causal equation: acute infection + corticosteroids = ME/CFS In a presentation by at the Invest in ME Conference...
  18. snowathlete

    The prevalence of chronic fatigue syndrome/ myalgic encephalomyelitis: a meta-analysis

    Don't think this has been posted yet. From Marshall et al in Australia. http://www.dovepress.com/the-prevalence-of-chronic-fatigue-syndrome-myalgic-encephalomyelitis-a-peer-reviewed-article-CLEP 26 March 2013. Samantha Johnston,1 Ekua W Brenu,1 Donald Staines,1,2 Sonya Marshall-Gradisnik1...
  19. Whit

    Has anyone gotten CFS after a physical trauma (major car accident, burn, etc) ?

    Has anyone wound up with CFS after/from an incident of major physical trauma? By physical trauma I mean a major car accident, a serious burn something like that. I'm not talking about emotional trauma or an infection, however serious. You would have been hospitalized for this kind of physical...
  20. Snow Leopard

    (2007) Prevalence estimates of CFS, FM, MCS from the Canadian Community Health Survey

    I didn't know about this study until now, but this is a paper from the Statistics Canada Health reports publication: http://statcan.gc.ca/pub/82-003-x/2006001/article/sympt/82-003-x2006002-eng.pdf This is part of the results of the 2003 Canadian Community Health survey, which had 135,573...
  21. Cort

    The Family Member ME/CFS Prevalence Poll Take II

    Does ME/CFS crop up in families? Take the poll and lets find out! If at least one member of the following groups has something that appears to be ME/CFS (mysterious fatiguing and debilitating disorder doctors cannot figure out) please check them.
  22. K

    Do your children have ME/CFS?

    coxy, one of our new members, posted: hi, i'm new. i'm a M.E mum of 4 children, 2 of them also have M.E i'm afraid.