Search results

The Mind-Body Syndrome Study by Daniel Maroti and Robert Johansson at Karolinska Institutet in Sweden is currently recruiting. (This is not a recommendation!) It's an online treatment focused on emotions. It's called "MBS-studien" in Swedish. http://mbsstudien.se/ More info about Maroti's...

"Kroniskt trötthetssyndrom" in Swedish, but only the BPS people refer to it as "KTS", and a few of them sometimes use "CFS" or "CFS/ME". "Trötthet" in Swedish means "tiredness", so it's even worse than "fatigue"... "Utmattningssyndrom" or UMS, burnout, (literally 'exhaustion syndrome') is a...

@JemPD Were you watching the latest episode of Jane the Virgin? :) So funny, she was frantically tapping out that complicated pattern, and when someone asked her if it was helping, she replied something along the lines of 'at least trying to remember the pattern takes my mind off the anxiety'...

For those of you who would like to help more readers discover Karin Alvtegen's brilliant book about life with ME :) (It's a mini social media campaign started by one of her readers, a pwME, encouraging people to share their thoughts on the book on social media using the tags #osynligtsjuk...

I agree. However, according to this twitter conversation Jen Brea thinks adding EDS, MCAS and POTS to MEpedia is a much better idea than them starting their own wikis.

@Jonathan Edwards is right, she didn't exactly say all poorly understood diseases. In this twitter conversation about MEpedia, she writes: However, the list of diagnoses is much longer than that. The 'comorbidities' she mentions (see for example this tweet and this tweet) are: POTS EDS MCS...

Although I haven't read the whole report, I share your concerns. I was thinking about this just the other day. In one of the current Swedish research studies, which is run by people at a pain clinic, they seem to be wanting to try to apply their pain treatment model to ME (only my personal...

Not that I'm aware of. If I had to guess, I'd say that since one of the inclusion critera is that you have to be a patient at Stora Sköndal ME/CFS Center, maybe they will recruit people by contacting their current patients directly? Letters have been sent to some of their patients, that much we...

Per Julin at Stora Sköndal/Karolinska Institutet is a MD, PhD, specialist in rehabilitation medicine (brain injury focus), with clinical research in cognitive disorders, especially neuroimaging, including 6 years at Astrazeneca R&D, Clinical experience with ME/CFS since 2010. Publication list...

For those of you not already familiar with Shahram Lavasani. He's an immunologist at Lund University. He has been involved in ME since 2016, and among other things attended the IiME colloquium and conference. Here's one of Lavasani's previously published papers (MS, used a mouse model)...

Questionnaires, blood tests and fecal samples before and after treatment. ETA: To clarify, like Clementine wrote, you do the fecal sample part yourself. They give you instructions, a plastic container and a special pre-paid envelope so you can mail the samples in. I agree with everything else...

Thanks for correcting me :) Editing my original post!

Stora Sköndal ME/CFS Center in Stockholm, in collaboration with ImmuneBiotech Medical Sweden (Shahram Lavasani, among others) will be starting a new research project this autumn. Primary investigators are Dr Per Julin and Dr Anders Rehnström. The aim of the study is to investigate the effect...

I just finished reading a very interesting discussion about MEpedia on Twitter. It's a long one, so I'll only quote a few tweets. You can click on any of the embedded tweets to continue reading the rest of the thread. To be honest, this new vision is not one I share, so sadly I most...

They have started recruiting participants now, letters have been sent to 280 of their ME patients, according to this Facebook post by Björn Bragée. ETA: For those of you who are unable to read the comments. One of Bragée's comments says that this particular study is only open to their current...

I'm in Sweden (currently using my regular ISP, no VPN etc) and I'm getting a very clear error message saying that it's blocked due to a decision by the Patent and Market Court.

Thank you so much for taking the time to explain, very kind of you! :)

This surprised me. Is it true? Biomarkers or diagnostic biomarkers?

Wonderful to hear that you are planning an English translation! Yes, you are totally right. I should have asked you before sharing the Google translated content here. I'm so sorry. I can delete all of it, if you'd like? Or you could report the posts you want removed, ask the moderators to...

Great Twitter thread (in Swedish) about giving informed consent to participate in research and allowing your medical data to be shared, why ethical approval doesn't guarantee that the risk assessment is realistic, advice on how and where to find what you need to know, lack of reporting of harms...