ME-conference in Sweden with English-speaking lecturers Wed Oct 19th, available for streaming

Kalliope

Kalliope

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The Swedish ME Association (RME/Riksföreningen för ME-patienter) has organised two conferences on ME which will be held tomorrow (19.10) and on Thursday (20.10).

The conference tomorrow will be available for streaming and three of the lectures will be in English:

10.00 - 10.40 Symptoms and diagnostics by dr. Per Julin/Stora Scandals neurorehabilitering
10.50 - 11.30 Summary of the IOM Report, and the relationship to diagnosis and treatment of ME/CFS
by Lucinda Bateman, MD
13.00 - 13.45 Rituximab for ME/CFS: Revealing immunological cues to underlying disease
mechanisms by Geraldine Cambridge

(Edit correct link) Link for streaming
https://vllplay.vll.se/videos/video/211/?access_token=shr00000002116058431586742580483845531066505

Link to the whole program and instructions for live-chat (in Swedish).

Not sure if the streaming is live only, or if it will be available as a video afterwards.

Here is the program for the conference on Thursday. Both programs looks very interesting. Thumbs up to RME!
 
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aimossy

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I love how Sweden does their conference livestreamed and then puts talks on youtube. One programme says it's Geraldine Cambridge talking re ritux and one programme says it's Oystein Fluge. Does anyone know for sure which will be definitely talking?
 
mango

mango

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Kalliope said:
Not sure if the streaming is live only, or if it will be available as a video afterwards.
Click to expand...

Yes, it will be recorded and available afterwards.

However, you're meant to sign up in advance for the livestream (for technical reasons, apparently they need to know how many people to expect in order to adjust the settings etc), so we've been asked not to share the webstream link publicly. Did you get permission to share the link here, @Kalliope?
Registration form said:
For registration in English, please contact: kerstin.heiling@rme.nu
Click to expand...
http://rme.nu/umea-2016

ETA: I've made sure the technicians are aware that the livestream link is being shared publicly to a wide audience, so they will be taking that into consideration :)

RME is very happy to hear that so many people are interested :)
 
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mango

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Case studies.

Björn Hedman is telling a bit about his wife's experiences, her story.

Gertie Gladnikoff is sharing her own story.

ETA: Technical problems again... The livestream isn't working at all, at the moment.
 
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mango

mango

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The livestream is working again, now with video! :)
https://vllplay.vll.se/videos/reserveurl/d622eec2-11eb-11e6-bb6b-00000000a259

Dr Per Julin from the ME/CFS center at Stora Sköndal is currently talking briefly about diagnostic criteria, a little bit of history and how they have changed over time, potential problems with wide critera (Fukuda, Oxford), he emphasizes that it's important to distinguish between ME/CFS and stress related fatigue and burnout (Sweden has national guidelines for burnout, which is different from depression, different from ME/CFS).

Briefly mentions prevalence, prognosis.

Now talking a bit about the ME/CFS centre at Stora Sköndal (3 specialist physicians and getting 2 more soon, 2 assistant physicians + a lot of other staff), and what kind of services they are currently offering.

He mentioned that it would be great to have a mobile team, to be able to make house calls to the very severely ill.
 
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mango

mango

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Dr Lucinda Bateman

Talking about why she initially got interested in ME/CFS. Her sister was ill with this disease. Giving a brief timeline of her work and research, being on the IOM committee etc.

Talking about the IOM report, its aim and the work process, key messages, diagnostic criteria, SF-36, PEM, CPET (doesn't recommend, can hurt patients), earlier gene expression studies she's been involved in together with prof Light, showing graphs with data from a new (not published yet) exercised-induced gene expression study she has done, sleep issues, cognitive impairment (she's still walking through the IOM diagnostic criteria), mentioning Watanabe's brain study,

Orthostatic intolerance, what symptoms it can cause and how to measure it, NASA 10 Minute Lean Test (https://batemanhornecenter.org/assess-orthostatic-intolerance/). Pain, immune manifestation, neuroendocrine, inflammation etc, still going through the criteria.

Mentions that the new name that was suggested wasn't really well met. The name was meant to capture the clinical audience. The problem with calling it ME was that they changed the criteria.
 
mango

mango

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Here's the slide with Rosén's summary:

rosen_zps0mmlstxx.png


Lunch break for 1 hour now, starts again at 1 pm local time.
 
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S

Sasha

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Only just twigged - Sweden is an hour ahead of the UK, so Jo Cambridge's talk will be at noon, UK time.

Lunchbreak now (the only words I understood in all that Swedish!).
 
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