Sweden - RME news

Copied my comment from the Cochrane-thread to this one as well :)

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Listening to Katarina Lien from today conference in Sweden - she is up to date on things! Mentioned the (temporarily) withdrawn cochrane review :thumbup:

She was also very clear on what she hears from and sees in patients don't match the story a certain research community tells. And she hopes the reviewers will take this oportunity to re-evalue their work - phrased in a way that makes it very clear she hopes the review goes.

(Since it's in spoken norwegian I dont bother link? but it's at about 13:34 in the second part from today)
 
After the daily dose of making patients the villain in the story - it was really nice and uplifting to hear Dr. Zaher Nahle underline the importance of Unrest and patient advocacy in the US to start turning the situation around :)

Direct link to his talk, on the first day - since that had better audio.

The other talks were in swedish and norwegian, but perhaps will be texted? Anyone understanding spoken swedish/norwegian I would recomend listening/watching the first day, because of much better sound/audio.

 
Merged thread

ME-conferences Oct. 16th-17th 2019

I think these conferences have been mentioned in the "News from Scandinavia"-thread, but as they will be live-streamed and one of the lectures is in English by Jarred Younger (via video), I'm making a separate thread so that the conferences can be added to the calendar.

The Swedish ME Association (Riksförbundet för ME-patienter) is organising conferences about ME for the 12th year in a row. They will be held in Stockholm and Umeå.

Programme (translated from Swedish)
  • Jesper Mehlsen - Meeting ME/CFS patients in the clinic
  • Petter Brodin/Per Julin - INMEST-treatment, immunology and brain imaging in ME
  • Jarred Younger - The Brain on Fire
  • Sture Eriksson - Living with ME/CFS - A survey among RME's members
  • Jonas Bergquist - What do we know about ME/CFS? What do we think we know? What is uncertain?
More information here
https://rme.nu/konferenser/

The livestream will be on YouTube. Here is link to their YouTube channel
https://www.youtube.com/channel/UCYOw04J29tY5hTLDtdjoaog

The conference in Stockholm is Wednesday Oct. 16th from 13.00 - 17.00 local time
The conference in Umeå Thursday Oct. 17th is from 13.00 - 17.00 local time
 
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Watched the start of the conference. Mehlsen seems like a compassionate and sensible guy. Being critical to vaccines and highlighting possible side-effects, will always be controversial, but I thought doctor Mehlsen gave a good impression. Must be nice for our danish friends to have this doctor weighing in vs. Fink.

There will be a big difference between old and new patients going to a clinic like this and similar clinics. Must be a blessing to meet the approach of Mehlsen as a new patient. Then there should be a whole lot important to learn. That’s good. For the other ones, the ones who have been around for a while, the value is probably quite limited. I guess “old patients” have figured out most things by themself long time ago, when it comes to what will work and not on a daily basis.

For everybody it could obviously be worth trying to treat symptoms with the usual stuff, but it’s sad we’re not better off in that department.
 
Merged thread

ME conference on PEM 14-15th Oct 2020

The Swedish patient organisation RME is organising an ME conference about PEM.

14th October in Stockholm
15th October in Malmö

Lecturers
Prof. Kristian Sommerfelt - University in Bergen, Norway
Prof. Betsy Keller - Ithaca College, USA
Dr. Ron Davis - Stanford University, USA
MD Kent Nilsson - Bragée Clinic, Sweden

More information in Swedish here:
https://rme.nu/konferenser/
 
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Surely they are not expecting Ron Davis to travel to Sweden in October with Covid-19 likely to still be around.
 
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Lectures from this seminar are now available on YouTube

English lecture are
"ME research and development of diagnostic tools" with prof. Ron Davis and
"PEM - strategies for determining and managing the cardinal symptom of ME/CFS" with prof. Betsy Keller.

In addition there are two lectures in Swedish on diagnosing ME by dr. Kent Nilsson and possible connections between Covid-19 and ME by prof. Jonas Bergquist as well as a lecture in Norwegian by prof. Kristian Sommerfelt on children and adolescents with ME.

https://www.youtube.com/channel/UCYOw04J29tY5hTLDtdjoaog/featured
 
I have just watched Besty Keller's talk.

She did interesting stuff about 2 day CPET.

She talked about the recent NIH PEM study and quoted bits of it.

Then she went into her stuff about treatments, none of which is evidence based as far as I can see.

I thought it seemed familiar.
To save repeating myself, here are comments about her talk last year.
https://www.s4me.info/threads/norwa...e-nov-25th-26th-2019.11827/page-2#post-223731
 
Kalliope said:
Lectures from this seminar are now available on YouTube

English lecture are
"ME research and development of diagnostic tools" with prof. Ron Davis and
"PEM - strategies for determining and managing the cardinal symptom of ME/CFS" with prof. Betsy Keller.

In addition there are two lectures in Swedish on diagnosing ME by dr. Kent Nilsson and possible connections between Covid-19 and ME by prof. Jonas Bergquist as well as a lecture in Norwegian by prof. Kristian Sommerfelt on children and adolescents with ME.

https://www.youtube.com/channel/UCYOw04J29tY5hTLDtdjoaog/featured
Click to expand...
My bad!

Professor Kristian Sommerfelt's lecture is NOT in Norwegian, but in English :)

Haven't watched yet, but other lectures I've seen with him have all been superb!
 
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