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  1. Wyva

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    The BMJ: Health secretary pledges more ME/CFS research as he reveals that relative has condition by Ingrid Torjesen Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and...
  2. Wyva

    Is Long Covid a type of ME/CFS?

    I've remembered another one: Chronic Fatigue and Postexertional Malaise in People Living with Long COVID: An Observational Study, 2022, Twomey et al
  3. Wyva

    Is Long Covid a type of ME/CFS?

    There was also this one:Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post–Coronavirus Disease, 2021, Mancini et al It used Fukuda though. Then there was this one relatively early on, where the vast majority experienced PEM. It was an online survey though...
  4. Wyva

    Energy production and autonomic dysfunction: how are they connected?

    I'm not diabetic but I have the same experience with eating. Afterwards I can feel extremely sluggish with very intense brain fog, drowsiness etc and I often have to even lie down and sleep. It may sound like what healthy people sometimes feel after a big meal but it is actually much worse and...
  5. Wyva

    United Kingdom: Science Media Centre (including Fiona Fox)

    I can see it on Goodreads, good job. :thumbup:
  6. Wyva

    Comparing Operationalized Approaches for Substantial Reduction of Functioning in CFS and ME, 2022, Wiedbusch and Jason

    Full title: Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis Abstract A core criterion for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) is a substantial reduction in functioning from...
  7. Wyva

    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Patients (with any kind of terrible disease but especially of unknown etiology) can be desperate for an answer, hence we are in this CCI thread to begin with. :emoji_shrug:
  8. Wyva

    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    From time to time people show up in my group asking if they sound like someone with ME/CFS based on their symptoms. And there are a few people who always say "these are Lyme symptoms, don't trust the tests and go to this one doctor, she is the only person in the whole country who can diagnose...
  9. Wyva

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

    I talked about a potentially sympathetic neurologist in this earlier, longer post: I messaged her a couple of days ago and asked if she might potentially accept ME/CFS patients in the future (for diagnosis, medical advice according to NICE etc) and she replied (Google Translate): Dear Agnes...
  10. Wyva

    Article in Verywell: An Overview of Central Sensitivity Syndromes What It Is and Treatment

    An Adrienne Dellwo article again. She keeps writing these as if they were fact.
  11. Wyva

    Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

    If the first author's, Jan Choutka's name sounds unfamiliar: He is (I think) the chairman of the Czech ME/CFS Association. Recently I shared his posts in the Visegrád countries thread, where he explained that they wanted the Czech Republic to adapt the NICE guidelines and the process to develop...
  12. Wyva

    News from Austria and Switzerland

    This was originally posted by a member of the Austrian Green party and reposted by the Austrian ME/CFS organization CFS Hilfe. Those in the picture are members of the Green party, all wearing ME/CFS T-shirts (I think last year we saw the Austrian Minister of Health wear one.) Facebook...
  13. Wyva

    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    I like how they don't even use the initials anymore for those acronyms and just pick any letter that comes next from the middle of the words. Now the possibilities are endless for such a cardinal feature of these studies.
  14. Wyva

    The associations of long-COVID symptoms, clinical characteristics and affective psychological constructs in a non-hospitalized cohort, 2022, Ocsovszky

    Thanks. (I wonder why I haven't seen this. This was published by the Hungarian Academy of Sciences and I follow two (!) of their repositories. Maybe there is a delay in uploading but I'm also overall not satisfied with those repositores regardless of this.) There's a lot to unpack here. If...
  15. Wyva

    Peptic ulcer and the discovery of Helicobacter pylori - from skepticism to the Nobel Prize

    Every once in a while peptic ulcers are mentioned here as a parallel to ME/CFS. Peptic ulcers were seen as something caused by stress and/or bad dietary habits until the discovery of the bacterium Helicobacter pylori in the stomach by two Australian doctors, Barry Marshall and Robin Warren...
  16. Wyva

    News from Southeastern Europe

    Article from Serbia. Politika seems to be one of the major news sites in the country. Chronic fatigue as a consequence of corona Not everything is factually correct in the article but the president of the country's ME/CFS association is one of the people talking about ME/CFS. Google translate:
  17. Wyva

    EDS, hypermobility, and the link, if any, to ME/CFS

    I just thought I would share my own n=1 story, which shows that you can have some really bad hypermobility problems without actually having hEDS or similar. I had badly formed bones in both of my knees, which only became apparent in my teens, as I was growing. What happened is that my kneecaps...
  18. Wyva

    Question: what do you think is a reasonable time that passes between an infection and ME/CFS onset?

    Discussion moved from ME Epidemiology - prevalence, peak ages of onset and gender ratio Question: what do you think is a reasonable time that passes between an infection and ME/CFS onset? For some people the ME/CFS symptoms don't start straight away after an infection and there seems to be a...
  19. Wyva

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    I think is is great what's happening in the UK, but it looks like these things still also need some luck to happen, someone in a key position having a close relative with the disease. I don't want to detract from anyone's work at all who has obviously put plenty of effort into this, but I think...
  20. Wyva

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

    Yes, I actually mentioned that at the end of the original post, but I think I should have added it somewhere where it is easier to notice. :) Edit: Now I've changed the original translation in the post to make this more clear. :)
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