Sweden - RME news

Interested in some kind of summary of Zaher's talk, if it's possible, given that he's now employed by an arthritis organisation. I'm wondering if he indicates that they will be pursuing research into specifically ME.

 

I'm sorry, I'm unable to listen myself (too ill). I'll try to listen back to the recording later, when I can pause often etc. I'll let you know if I find any written summaries posted in any of the Swedish groups.

 

@Andy he just presented an overview of the centers and other research efforts in the US, as well as outlining all the information gaps in ME research (news flash: it’s all gaps, zero knowledge).

Other than that he is very optimistic for the field of ME/CFS - “more ladders than chutes”

 

Awesome, thanks.

 

Argh! I was going to watch Nahle but have just realised that the UK is an hour behind and I've missed him.

Will this be on YouTube later?

 

Yes, the recording will be on YouTube later.

 

Oh! Just read this. So Zaher Nahle's talk will be on again at tomorrow at 4pm, which is 3pm in the UK.

 

You can skip around in the live feed as well, as long as it’s still going.

 

I am too slow for this - just posted on the thread on the Stanford symposium.

In case anyone was/ is watching the contribution on the Rituximab trials, I copy my question over here:

I know from people with RA and MS treated with Rituximab that they get high dose cortisone and antihistamines immediately prior to the Rituximab infusion to reduce the risk of severe side effects. Does anybody know whether the participants of the Norwegian trials also got cortisone? And if they got, could this have any relevance, e.g. that some of the "responders" of the first trial phases benefited rather from the high dose cortisone than from Rituximab?

 

They were all given cortisone. Unlikely that it affected outcomes as it’s out of the body quickly.

 

The politician who gave the opening talk has blogged about it here:

http://wp.kristdemokraterna.se/ellabohlin/2018/10/17/okad-kunskap-om-sjukdomen-me-cfs/

 

Thank you @andypants.

I think it still would be interesting to know the dosage. See here:

https://www.s4me.info/threads/stanford-community-symposium-2018-fluge.6037/#post-112960

In addition, as far as I know cortisone has a huge effect on metabolism. Even though I have no idea about the biomedical details, and don't know whether there might be some plausibility to the hypothesis that we just have to find the adequate substance to wake up from a hibernation-like state, with this regard, high dose cortisone might also have an effect?

(Edited for clarity.)

 

Correct me if I'm wrong but did it not take 2 to 3 months before responding patients started reporting a positive effect? A theoretical response to the cortisone, springing open a potential metabolic trap, would presumably result in an earlier response than that.

But I'm just going by what seems logical to me, so ultimately, who knows. If we are speculating about an effect from the cortisone, why not an effect from the anti-histamines, either as well or by themselves? Subjectively, I've previously had a helpful response to taking them, so why could they not play a part?

 

Correct, @Andy

From my own perspective, the cortisol and the saline IV allowed me to get through the treatment and travel better than without, but by the time I got home the effect would already be waning and I would crash hard.

Cortisol can give you an extra boost in the short term (like getting a PwME through labor without crashing in the middle of it), but it doesn’t last. Some PwME are sensitive to cortisol and feel horrible on it. I think in general it’s something we should be very careful with.

However, I don’t know of course and there could be some sort of effect for some people.

 

1.5 hour left for todays conference to start!

Also - it seems like yesterdays conference is now available via the top link (it wasn't last night).

 

The livestream is about to start any minute now

https://www.youtube.com/watch?v=tNujWhuACrI

 

The video quality isn't great today, unfortunately. RME commented in the chat that an edited video (recorded with a different camera, from a better angle) will be published in a couple of weeks.

 

New link for the second part of the livestream

https://www.youtube.com/watch?v=pjzjVNPCIrA

 

Thank you @mango