International ME/CFS Conference of the Charité Fatigue Center on 11./12. May 2023 in Berlin, supported by the ME/CFS Research Foundation

I registered yesterday for online attendance. I haven't had the expected email confirmation with link to access it. I'm wondering if my registration didn't register and I should try again. Has anyone else signed up?

Edit: I've registered again.
 
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Helene said:
Am very interested in a report from this 20 minute presentation by Luis Nacul on Friday. Unfortunately I won't be able to catch it as it's at 1 AM for me in Western Canada.

Don't have the energy to go into a lot of detail now but am finishing the year long Complex Chronic Disease Program out of Vancouver which Luis Nacul heads and still trying to figure out why Central Sensitivity Syndrome remains a part of the program.

Thanks in advance if anyone is able to pass on the general gist of the presentation!
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I happen to know Dr Nacul and the following is an example of what I will try to do in the conference : What you see below is what you get when you use an Information retrieval system to query a database of medical concepts related to a research subject (in this case CSS).

Showing this to Dr Nacul , I would ask him if he is aware of connections of CSS with the concepts shown below ( e.g. glucocorticoid receptor, adrenal insufficiency, sex differences in perception, etc)

We need these kind of technologies to quickly put the pieces of the puzzle together.


central_sensitivity.png
 
Having thought my first attempt to register for the conference had failed, I tried again yesterday. Today I received 2 emails with details to log into the conference. The first was addressed, correctly, Dear Ms Davis, the second was addressed Dear Mr Trish. :laugh:
 
Trish said:
Having thought my first attempt to register for the conference had failed, I tried again yesterday. Today I received 2 emails with details to log into the conference. The first was addressed, correctly, Dear Ms Davis, the second was addressed Dear Mr Trish. :laugh:
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Nice work Mr Trish!

I started trying to work out how to register etc but I gave up... I managed to switch the page into English, and click some links that seemed to be about registering.. and then I got confused and gave up!
 
Trish said:
Having thought my first attempt to register for the conference had failed, I tried again yesterday. Today I received 2 emails with details to log into the conference. The first was addressed, correctly, Dear Ms Davis, the second was addressed Dear Mr Trish. :laugh:
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I've received the email addressed to Mr as well, I'm usually Ms, sure I didn't declare myself a Mr on the form. Quite amusing!
 
Well, I went online at 5pm to watch Prusty's talk and realised that, of course, Germany is one hour ahead of the UK :dead: I'll blame cognitive disfunction ;) I'm interested to hear Fluge talking tomorrow. I wonder how Fluge and Mella's work fits with Prusty's. I'd like to hear them in conversation. Wouldn't it be interesting to be a fly on the wall at the get together this evening?
 
I started out with good intentions, listened to the first one and fell asleep (to be fair the time difference wasn't helpful). But I woke up in time for the afternoon session.

I see that there are a few comments on Prusty's talk, which probably wouldn't have warranted a singling out for a mention if he hadn't hyped it. It ended up being, well, underwhelming. Perhaps he has some more to come later. I didn't attempt to take notes - 3 am in the morning with a headache didn't make for clear thinking.

I did like the presentation by the Bonn woman about the immune cell populations. She said that she didn't expect to find differences in the various immune cell populations in people who had had a Covid-19 infection, months after they had been ill. She was surprised to find there were. The finding of differences in monocytes and natural killer cells between people post-covid, with and without persisting symptoms, indicative of an inflammatory milieu in the LC group was one on the most convincing bits of Long Covid research I have seen lately. I think the work created a lot of research leads to follow. I think we've seen the paper for that research, I'll add a link later.

The man who injected fibromyalgia autoantibodies into mice and found that they developed behaviours suggestive of fibromyalgia-like symptoms came across pretty well I thought. But, no one asked him 'can you really be sure that the human antibodies are acting as they do in humans when you inject them into mice, and that it's not that you have just created a general pathogen response, that would have occurred if you had injected bits of any other animal into the mice?'. Or a question like that, but more intelligent. So, I still don't know if the study was a break-through for fibromyalgia or just something that was rather misconceived.

The Portuguese man who crunched numbers came across well too. He was suggesting that possibly people shouldn't get so carried away with the molecular mimicry idea and worried about specific autoantibodies, because the evidence isn't identifying consistent patterns of autoantibodies. He seemed to be favouring the cell danger hypothesis - cells reacting to a stressor, and I think suggesting that the autoantibodies might be the stressors. I don't know, I thought I understood at the time, but clearly I don't. One to watch again, I think.

Did anyone else have any thoughts?
 
Hutan said:
The man who injected fibromyalgia autoantibodies into mice and found that they developed behaviours suggestive of fibromyalgia-like symptoms came across pretty well I thought. But, no one asked him 'can you really be sure that the human antibodies are acting as they do in humans when you inject them into mice, and that it's not that you have just created a general pathogen response, that would have occurred if you had injected bits of any other animal into the mice?'. Or a question like that, but more intelligent. So, I still don't know if the study was a break-through for fibromyalgia or just something that was rather misconceived.
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I assumed that was dealt with by having a control group of mice injected with the same from healthy people. I'll have to check the published paper.
Edit: found it:
https://www.s4me.info/threads/passi...rom-patients-to-mice-2021-goebel-et-al.21286/
In contrast, transfer of IgG-depleted serum from FMS patients or IgG from healthy control subjects had no effect.
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I wanted to hear more about the 3 minute poster presentation from someone who had done muscle biopsies before and 24 hours after CPET and found differences from healthy controls in the muscle cells. I can't remember whether the patient group was ME or LC.
 
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