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

I found this twitter thread insightful, not able to delve into it now myself but thought people might be interested. At the end there is a link to the talk from Google drive.
Hope it's OK to post this here. Thanks for all the work you all do here ❤️
Still thinking about the bit regarding the astronauts, wondering when we will all get back from space!

For more discussion of Prusty's talk, see this thread: Research news from Bhupesh Prusty

 

That twitter post helped make a lot of sense.

Autoimmunity of some sort has to be 'part of' the big picture. My autoimmune friends go through peaks and valleys with their illnesses, just like us CFS people.

 

Continue funding ME/CFS research

"Berlin – Research into the disease myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continues to be the focus of science and politics. On the one hand, it is important to track down the causes, not least in order to be able to develop effective therapies. On the other hand, it is also a matter of reviewing currently available supply options.

That was the tenor at the 2023 ME/CFS Symposium, held on May 12, 2023 to mark International ME/CFS Day. In his welcome address, Federal Health Minister Karl Lauterbach (SPD) emphasized that understanding the causes and course of the disease can lead to effective and efficient care for those affected by ME/CFS."

https://www.aerzteblatt.de/nachrichten/143164/ME-CFS-Forschung-weiter-foerdern [In German, I used Google translate for the quote above.]

 

ME/CFS Research Foundation on Twitter:

"We will publish the #MECFS_Symposium2023 as well as the #MECFS Conference videos on our website as soon as possible. Follow us and/or subscribe to our newsletter to get latest updates": https://t.co/wMGqYPALUg

edit: Link to website in English language

 

MortenGroupOxford @OxMEDiscovery

Summary view and ideas following the Charite ME/CFS meeting.

 

@Dolphin It looks like the tweet has been deleted.

 

Thanks. I've now posted the replacement tweet.

 

From the link:
"Study suggests that ME/CFS patients maybe dealing with low levels of pathogens"

Ron Davis" "We feel as though we are constantly fighting a virus, but we are not".

 

Presentations from the Symposium available here, http://mecfs-research.org/mecfs-symposium2023/

Presentations from the Conference available here, http://mecfs-research.org/mecfs-conference2023/

 

Conference link directly in English: https://mecfs-research.org/en/mecfs-conference2023/

 

Looking at Prusty's talk I think he is doing sensible experiments. The biggest problem is that his sample sizes are way too low which makes a lot of it hard to believe in my opinion. It's cool I think to look at an antigen array and it is a good follow up to the 'factor in the blood' to isolate antibody and see if that is sufficient to induce the phenotype he's described before of mitochondrial fragmentation:

I'm not sure what to make of the fact he sees higher mitochondrial area in mild and low in severe, but altogether doesn't feel very conclusive to me. I would have also like to have seen if the remaining antibody depleted serum had an effect.

One of the central criticisms of his 2020 immunohorizons paper is that he talks about ME serum and talks about herpes biology but there's no actual link between those two experimental systems so it is spurious to conclude from that work that they are linked. The link he provides this time comes from ELISA for antibodies to the herpes protein dUTPase:

He's arguing there is greater anti-dUTPase antibody in ME and long covid but honestly I don't like inferring that from a percentage based plot like this. Antibody levels have been binned into 0,1,2,3 categories corresponding to low and high levels respectively. I'd like to see a scatter plot and judge for myself!

He looks at IgG and IgM antigen specificities by putting them onto an antigen array. He claims to not see anything in IgG but that the IgM array perfectly separates the healthies, milds and severes:

However the dendrogram on the left actually isn't showing that. It is forming two groups, one containing 2 healthies and the milds, and another containing 1 healthy and the severes. Besides that 3 controls is just not even close to enough to make any reasonable conclusions imo. I would love to see this same experiment but with n=100 in each group.

He is claiming to see higher levels of serum fibronectin:

If each of those dots is a patient then it looks like a good sample size and possibly a subgroup of patients have higher FN1. He's arguing in the rightmost scatter plot that FN1 levels correlate with severity. All this would be good to see replicated somewhere else. Plasma proteomics have been done before in a couple of different contexts and I don't think FN1 has been picked up before so I'm not sure that's encouraging.

 

"Dr Katrina Pears attended the 2-day research conference for the ME Association and reports on a selection of the presentations. The conference programme can be accessed here. It included 28 short presentations and a poster session with 25 posters (that included Dr Karl Morten speaking about his Raman Spectrometry study)."

https://meassociation.org.uk/2023/0...23-understand-diagnosis-treat-11-12-may-2023/

 

Published Summary —

Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome – State of the art: Report of the 2nd international meeting at the Charité fatigue center (Autoimmunity Reviews, 2023)