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And from what I understand, researchers are asked to consult with patient representatives about their research and I think that probably helps the situation a lot even if someone hasn't got a lot of experience in this field yet. And for example in Hungary, there has never been any biomedical...

It mentions PEM but mentions it as a common long covid symptom and only later starts talking about ME/CFS as something similar. It doesn't mention that it is originally an ME/CFS symptom. The article also talks about exercise intolerance in general (POTS, some people are too weak to exercise...

To be honest, I have this belief that at some point in the future someone will make an award-winning documentary on how nasty the BPS crew was towards this disease, how they twisted everything, how much politics was involved, how they made so many people's life miserable and so on. And honestly...

I took a look at the studies approved by the Medical Research Council last year in Hungary, so these are probably ongoing. These are the long covid related ones (these are also not the ones funded by the Academy, which I listed in this thread before). So the studies: Google translate: Title...

I just accidentally came across this and thought it was worth checking. This is the website. And this is the preliminary programme in PDF. No mention of ME/CFS, no mention of POTS and even covid hasn't got a lot of attention. These are the only covid-related "controversies" I found: -...

Not yet I believe. I'm a member of the survey's Facebook group and they are also supposed to send the data for individual countries to the people/group representing those countries, which in the case of Hungary is me and I haven't seen or received anything yet.

Btw, quite ironic how there is an article on the play titled Dr Semmelweis (currently playing in Bristol) in the same Lancet journal. It's paywalled, so I can't read it, but this is how it starts: Wikipedia article on Semmelweis for those who don't know: (But maybe BPS people would read this...

I think this is the study the article talks about, it is Norwegian, hm... Cognitive Behavioral Therapy Improves Physical Function & Fatigue in Mild & Moderate CFS: A Consecutive RCT, 2021, Gotaas et al

Merged thread Has some sort of full-scale attack started or are these just coincidences? Very problematic article: The National Institute for Health and Care Excellence (NICE) in the UK published a new chronic fatigue syndrome guideline. The previous NICE 2007 guideline recommended cognitive...

These are not just typical stock photos but pictures taken by a German ME/CFS organization, you can find them in the press photos section on their website. I use these photos too sometimes on my page. :) I don't know how these ended up in those articles but maybe some advocacy work was involved...

So in the end I sent a message similar to what you suggested. In short: - thanked them for drawing a parallel with ME/CFS in their studies - asked them if they are planning to research ME/CFS more or research ME/CFS along with long covid - told them that patients are extremely grateful for any...

The study is explained in this article: Cerebrospinal Fluid Offers Clues to Post-COVID ‘Brain Fog’ Over-Stimulated Immune System May Be Impetus to Cognitive Symptoms, UCSF-Led Study Shows

Abstract Cognitive post-acute sequelae of SARS-CoV-2 (PASC) can occur after mild COVID-19. Detailed clinical characterizations may inform pathogenesis. We evaluated 22 adults reporting cognitive PASC and 10 not reporting cognitive symptoms after mild SARS-CoV-2 infection through structured...

This is a new paper from the same Hungarian team who published this one last year: Severe Fatigue and Memory Impairment Are Associated with Lower Serum Level of Anti-SARS-CoV-2 Antibodies in pw Post-COVID (...), 2021, Molnar et al Again, they mention CFS: Chronic fatigue syndrome (CFS) is...

Abstract Background: Long COVID is a condition characterized by long-term sequelae persisting after the typical convalescence period of COVID-19. Previous reports have suggested the role of an unsatisfactory immune response and impaired viral clearance in the pathogenesis of long COVID...

So there was this study a couple of months ago in Hungary: Severe Fatigue and Memory Impairment Are Associated with Lower Serum Level of Anti-SARS-CoV-2 Antibodies in pw Post-COVID (...), 2021, Molnar et al You can see in the thread that the researchers also made comparisons with ME/CFS and...

Yes, a lot of them, it is quite a common symptom. Here is the NHS website mentioning it for example: https://www.nhs.uk/conditions/coronavirus-covid-19/long-term-effects-of-coronavirus-long-covid/

Two articles this time: First: Prime example of how little these people understand what's going on and I'm only sharing this because it's so ridiculous that I don't know if I should laugh or cry: Many struggle with anxiety, sleep disorders, but also with the weight of grief and trauma - Covid...

Cancer is a great topic for this. I get the impression that here in Hungary BPS people focus way more on cancer than on us. They just published an onco-psychological guideline here, which I kind of skimmed through and realized that biopsychosocial is an outdated term now, instead it is now...

It is possible to get the 4th shot here now. I'm kind of thinking about it, as I had my third one back in August. But I read all kinds of conflicting things about it, so I'm not sure if it is really worth getting it. Is it useless against omicron and the possible later variants? Does it still...