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  1. Wyva

    News from Austria and Switzerland

    Posted by the Austrian patient org on FB (translated by FB): This seems to be the long covid guideline they mentioned (Google translated version of the website): https://oegam-at.translate.goog/artikel/leitlinie-s1-und-webtool?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp I haven't...
  2. Wyva

    News from Malta

    ME, CFS & Fibromyalgia Alliance condemns benefits abuse The Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) & Fibromyalgia (FM) Alliance has condemned the benefits fraud abuse, questioning why people suffering with Fibromyalgia and Myalgic Encephalomyelitis are being...
  3. Wyva

    Gupta amygdala training program for ME/CFS, FM and Long Covid - news and discussion

    Is that the kind of forgiveness expert that tells abuse victims to forgive their abusers, no matter what, even if the abuser never even admitted the harm? Because then I have no more questions. OK, according to this article, yes, he is that type.
  4. Wyva

    Characteristics and Treatment of Exercise Intolerance in Patients With Long COVID, 2023, Edward et al

    Yep, everyone knows that even healthy people need to work out every day because if they skip even one day, they might risk ending up as reverse Captain America. And that's if they are lucky and don't get disabled after a super lazy day.
  5. Wyva

    What does a good day look like for you?

    I had to realize that when I say I have a good day I totally mislead people and should just stop using it altogether. Because having a good day simply means not having a bad day (or a terrible day). Even on good days I'm still symptomatic, I'm still not my old self but I can somewhat manage...
  6. Wyva

    UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

    Yes, but these tests are used the same way by desperate patients to get a "confirmed" diagnosis. This is another lab that gets recommended to members in my group from time to time and some people see a positive result as a confirmation that thay have ME/CFS, POTS, SFN. I'm not sure this is...
  7. Wyva

    UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

    There are also the CellTrend tests for ME/CFS, POTS, long covid, small fiber neuropathy in Germany, which aren't really validated as far as I remember but sold to patients: https://www.celltrend.de/en/pots-cfs-me-sfn/
  8. Wyva

    UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

    This is a constant issue in my group, to the point that I had to include the word "Lyme" in my moderation alerts. Because some people there are convinced they have chronic Lyme and they pretty aggressively try to convince others too that it is actually Lyme disease they have, not long covid or...
  9. Wyva

    Gray Matter Changes Following Mild COVID-19: An MR Morphometric Study in Healthy Young People, 2023, Janszky et al

    Oh, I've only checked the thread titles to see if it was already posted. :)
  10. Wyva

    Gray Matter Changes Following Mild COVID-19: An MR Morphometric Study in Healthy Young People, 2023, Janszky et al

    Abstract Background Although COVID-19 is primarily an acute respiratory infection, 5%–40% of patients develop late and prolonged symptoms with frequent neurological complaints, known as long COVID syndrome. The presentation of the disease suggests that COVID infection may cause functional...
  11. Wyva

    Review Post-COVID Conditions, 2023, Mueller et al

    They mean the first SARS outbreak (SARS-Cov-1), which happened back then but on a much smaller scale. Still, there were a few studies even back then about the prolonged symptoms people had (even linking them to the then definition of CFS). (And this is why it is even weirder when people say that...
  12. Wyva

    Review Post-COVID Conditions, 2023, Mueller et al

    Abstract Postinfectious syndromes have been described since the Spanish influenza pandemic of 1918. A similar syndrome—post-COVID condition (PCC)—is common; it occurs months after COVID-19 infection and involves fatigue, postexertional malaise, dyspnea, memory loss, diffuse pain, and...
  13. Wyva

    Muscle strength is reduced for hours after light exercise

    Well, most of my workouts were quite insane and the goal was to push yourself to the edge of your capacity and even over, either with the weights or with the intensity, so I think that's why I ended up with this bit more prolonged muscle weakness/muscle fatigue every once in a while. (Luckily...
  14. Wyva

    Muscle strength is reduced for hours after light exercise

    Not from a pwME perspective: I had this happen to me occasionally during and after some of my workouts, back when I was physically very trained pre-ME. I did super intense workouts, not something beginners could complete or get even halfway through, mostly HIIT and strength training. Yet, when...
  15. Wyva

    A general thread on the PACE trial!

    This is what the ME Association posted on Facebook about the potential TV programme on the PACE trial: THE BBC REGRETS THEY'RE UNABLE TO PACK THE PACE TRIAL INTO THIS PROGRAMME... The 2011 PACE Trial just packs too much controversy into it to sit comfortably within the format of a...
  16. Wyva

    Ed Yong Articles on Long Covid & ME/CFS

    Agreed. The reason I gave up advocacy for almost a year (and only write stuff occasionally now) was due to this cognitive hurdle and worsening. I could do so much without physically over-exerting myself on the advocacy front but cognitive PEM just kills me.
  17. Wyva

    Long Covid in the media and social media 2023

    The Boston Globe: Actually, we can’t yet ‘ignore COVID’ Responses from readers to an article written by Dr Ashish Jha and which was titled “With a few basic steps, most of us can finally ignore COVID” There were two pop-up windows for me, I closed one and refreshed the page afterwards and the...
  18. Wyva

    Psychomotor Vigilance Test - discussion and testing

    For the record, I used my laptop with a mouse when I got my result upthread. Cognitive dysfunction, slow reactions, difficulty concentrating etc are among my most debilitating symptoms which are present (although to a lesser extent) even without PEM, so I'm not surprised. I did it again today...
  19. Wyva

    Psychomotor Vigilance Test - discussion and testing

    I got the same result as you, except that my response time was slower. Suboptimal. Edit: it was 437 msec
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