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  1. Wyva

    Psychometric validation of the French Multidimensional Chronic Asthenia Scale (MCAS) in a sample of 621 pts with chronic fatigue, 2023, Banovic et al

    Psychometric validation of the French Multidimensional Chronic Asthenia Scale (MCAS) in a sample of 621 patients with chronic fatigue Abstract Background Psychometric validation of the Multidimensional Chronic Asthenia Scale (MCAS) was conducted in order to provide an effective tool for...
  2. Wyva

    Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19, 2023, Lim et al.

    I really really wouldn't be surprised. I didn't share it here I think but a couple of weeks ago I saw an abstract for a conference from pediatricians from Semmelweis University here. And it was about the children they screened at their long covid clinic. Some of these kids did end up with...
  3. Wyva

    News from Austria and Switzerland

    From the FB page of the Austrian ME/CFS patient org: Facebook translation: Thanks to the WE&ME Foundation, a bio bank is now being worked on at...
  4. Wyva

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

    Just an abstract from the 14th Congress of the Hungarian Society of Human Genetics and Genomics. Google Translate:
  5. Wyva

    Nobel prize winner Katalin Karikó is now focusing on a disease without a cure

    This is the Ampligen trial they did with William Carter but this one only seems to be about HIV.
  6. Wyva

    Nobel prize winner Katalin Karikó is now focusing on a disease without a cure

    Btw, just as a "fun fact": She said this here: https://www.elsevier.com/connect/archive/transforming-rna-research-into-future-treatments-q-and-a-with-2-biotech-leaders Later, between 1985 and 1988, while working at Temple University in Philadelphia, I participated in a clinical trial in which...
  7. Wyva

    Nobel prize winner Katalin Karikó is now focusing on a disease without a cure

    I have no idea if anything about this can be found in English-language media but thought I'd share anyway. Katalin Karikó is one of the researchers (the other being Drew Weissman) who have just received the Nobel Prize for the development of the mRNA covid vaccines. She gave an interview in...
  8. Wyva

    Review Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2023, Grach et al

    Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID)...
  9. Wyva

    “Your Blood is Black”: My ME/CFS Experience with HELP Apheresis in Germany

    Ehh, my blood is taken a couple of times a year because of my TSH, next time is November. Those women there are taking blood all morning every day, so now I'm going to be the weirdo of the day for them and ask if they notice anything different about my blood or not. o_O
  10. Wyva

    Trial Report Effects of six-month creatine supplementation on patient- and clinician-reported outcomes, and tissue creatine levels (...), 2023, Slankamenac et al

    Full title: Effects of six-month creatine supplementation on patient- and clinician-reported outcomes, and tissue creatine levels in patients with post-COVID-19 fatigue syndrome Abstract Dietary creatine has been recently put forward as a possible intervention strategy to reduce post-COVID-19...
  11. Wyva

    Analysis of microvascular and neurodegenerative complications of mild COVID-19, 2022, Kolkedi et al

    Abstract Purpose To examine retinal and corneal neurodegenerative and retinal microvascular changes in patients after mild or asymptomatic COVID-19 disease compared to age-matched controls. Methods Thirty-five (35) patients after PCR-proven SARS-CoV-2 infection and 28 age-matched controls were...
  12. Wyva

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Shared it in my group and will probably share it a few more times for visibility but I don't expect a lot of signatures. I think for a lot of people here Cochrane and this "academic debate" is a bit obscure. I tried my best to explain it though and hopefully those a bit more interested in...
  13. Wyva

    Stellate Ganglion Block Relieves Long COVID-19 Symptoms in 86% of Patients: A Retrospective Cohort Study, 2023, Pearson et al

    Basically they retrospectively asked people treated with the therapy at their clinic about their symptoms and the results are based on their replies. No control group or anything. I just took a quick glance but I'm not sure we even know how many didn't reply, probably we don't. There may be even...
  14. Wyva

    Stellate Ganglion Block Relieves Long COVID-19 Symptoms in 86% of Patients: A Retrospective Cohort Study, 2023, Pearson et al

    Abstract Post-COVID-19 condition, also known as long COVID-19 syndrome and post-acute sequelae of SARS-CoV-2, encompasses an array of symptoms that persist well beyond the initial phase of the viral infection. These symptoms can range in intensity, from mild and manageable to severe and...
  15. 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...
  16. 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...
  17. 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.
  18. 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.
  19. 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...
  20. 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...
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