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  1. Wyva

    News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

    Symposium at the Hungarian National Academy of Sciences on 16th November: Current issues in post-COVID syndrome There will be a live stream on YouTube too, so anyone can watch it. It will take place between 10:00 and 16:30, quite a lengthy event. The programme (Google translate): As you can...
  2. Wyva

    News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

    English-language article in the Budapest Business Journal. It is a promotional piece on long covid, an interview with someone from a private clinic, however, there are some interesting bits: This part is not particularly great: If no serious organ abnormalities are found, symptoms are often...
  3. Wyva

    News from Israel

    There's a new article: https://www.timesofisrael.com/feels-like-dying-israel-leading-world-by-recognizing-sorrow-of-chronic-pain/ It says that these rights are actually extended to chronic fatigue syndrome too, not just fibromyalgia and it puts a bit more emphasis on CFS this time.
  4. Wyva

    Saliva fatigue biomarker index as a marker for severe ME/CFS in a community based sample, 2021, Jason et al

    ABSTRACT Objective The prevalence of pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5–17. We assessed whether a salivary biomarker of fatigue could...
  5. Wyva

    Dehydration-like feeling next day after exertion?

    I don't really have a dry mouth but feeling incredibly thirsty for no reason is an early sign of PEM for me. And yes, it doesn't matter how much I drink, the thirst just stays, it is unquenchable for quite a while.
  6. Wyva

    News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

    This one is from Slovakia, not Hungary this time. (Slovakia has a sizeable Hungarian minority for historical reasons and they have their own Hungarian-language news sites, so I can read about what's going on there.) So the thing is: apparently, they don't have any long covid clinics there yet...
  7. Wyva

    News from Israel

    "Israel will recognize fibromyalgia, a once widely dismissed illness that involves chronic muscle pain, as a disability. People with the condition will be recognized as disabled within a few weeks, and will be able to claim up to 40 percent of a full disability allowance, Welfare and Social...
  8. Wyva

    Open Functional microbiome study (Stanford)

    Yes, thanks, I saw that nothing was highlighted when I tried to copy it and just assumed that it cannot be copied for whatever reason (which would make sense on certain websites but not really for a patient organization, so it seemed quite odd of course). I
  9. Wyva

    ME/CFS and Long Covid and menstrual cycles

    I very much agree with this, I've had the same period-related experience (although for me it returned to almost normal when I got better after the first two really difficult years). The point is that I regarded this as one of the less dismissible symptoms, since this is really not something...
  10. Wyva

    Open Functional microbiome study (Stanford)

    Maybe you can ask here?: aokumu@stanford.edu They say you have to mention fecal swab study in the subject line to participate but you can probably ask them some questions too.
  11. Wyva

    Open Functional microbiome study (Stanford)

    ME Action doesn't let me copy the text, so here is the link with the details: https://www.meaction.net/2021/10/19/stanford-study-enrolling-now/ In short: It's Ron Davis's lab, they are looking for severely ill, mostly bed-bound people from the US. What is needed: fecal swab sent by mail +...
  12. Wyva

    News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

    Earlier I wrote about the roughly 1 million euros the Hungarian National Academy of Sciences is planning to spend on high risk research in connection with "post-covid phenomena". They want to fund 6-12 studies in the next 2 years. I think the original deadline was October (with actual research...
  13. Wyva

    United Kingdom: ME Association governance issues

    I know I sound like a stalker but if anyone is interested: the original post about becoming a patron has been deleted both from the MEA website and Facebook. This is what you can read in the comment section of today's FB post: ME Association limited who can comment on this post. (I'm a follower...
  14. Wyva

    United Kingdom: ME Association governance issues

    ME Association Trustee’s Statement re: the appointment of Professor Findley as Patron of the charity "Following the appointment of Professor Findley as a new patron of the charity on 06 October, and while we have received a good number of messages supporting the decision from both charity...
  15. Wyva

    WHO: A clinical case definition of post COVID-19 condition by a Delphi consensus

    Medical News Today: WHO issues clinical case definition of long COVID I believe the WHO should also create a case definition for stillnotgettingitis, a terrible chronic psychosocial disease so many unfortunate doctors suffer from. From the article: Dr. Al-Aly, the chief of Research and...
  16. Wyva

    What is the evidence for collagen degradation in ME/CFS?

    I think the proponents of craniocervical instability (as a reason for ME/CFS symptoms) say that infections can break down collagen (I think there is a study about this somewhere). That's another "connection". However, @Jonathan Edwards said earlier that there is no reason why that breakdown...
  17. Wyva

    "Can someone as Young as You Really Feel That Much Pain?" - A survey on How People With Fibromyalgia Experience Healthcare in Sweden, 2021, Hasselroth

    When I had that major knee surgery at the age of 20, I told the nurse about the pain I felt afterwards (literally just days afterwards). Her reply: you don't know what real pain is. So at least her logic seemed to be that it cannot hurt too much if you aren't old enough to have experienced...
  18. Wyva

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    'These people aren't crazy': How long COVID could help sufferers of other little understood syndromes From an Australian news source, focusing on Ross River virus and its long-term effects. Personal stories from two patients (one diagnosed with ME/CFS) and a virologist from Griffin University...
  19. Wyva

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A medical mystery, the neurology of long COVID comes into focus An article about the theories surrounding long covid, with occupational medicine specialist Dr. Greg Vanichkachorn, medical director of the COVID-19 Rehabilitation Activity Program at Mayo Clinic. Excerpts: One emerging area of...
  20. Wyva

    New Statesman article: “Society is ableist”: Alice Hattrick on gender, chronic illness and long Covid

    I think it is generally quite good, you should read it. :) Hattrick made some interesting claims though, for example that Virginia Woolf etc probably suffered from ME/CFS too and I'm not sure if this really is a serious hypothesis. Or at least this is new to me but it also seems to be part of...
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