ME researcher Jonas Bergquist - interviews, talks

Graeme Jones and Annie Pettersson at Nordic Clinic Stockholm has interviewed Jonas about ME/CFS and his unique research. You can view or listen to the full interview below.

https://nordicclinic.se/interview-with-me-researcher-jonas-bergquist/

also on youtube

eta: in english

 

Just listened. Interesting, good update on his current research and his thoughts on other ME developments, and calm easy to listen to this kind, knowledgable and dedicated researcher.

 

Gosh, I hope I fall asleep tonight--that's how agitated I became after the interview--even though he was calm, rational, insightful, level headed and a from what I heard, a good scientist. But basically, Dr Bergquist summarised what most of us already have learned from the various summaries on the current research. So, he really did not add anything new here at all. The thing that struck me most was that he kept saying and repeating in one way or another: = we need to study that further, we need to look at that, that needs validation, there is limited funding...those were the phrases that bubbled up to the surface over and over again. He is a very intelligent man, who diplomatically knew how to dismiss bunkum ideas, and I appreciated that very much. But after listening to this interview, and from his phrasing he sees a very very long road ahead in terms of the research that still needs to be done for ME.

The question for me then is: will it be decades before there are some answers?
(Please note that he said it was only in 2019 that he finally came on board with OMF and then he organised a tiny group to work on ME in his home country!) And the subject of possible and readily available treatments was therefore not even really part of this interview.

 

Most ME researchers have this same type of interview... way more ideas than money, very little true progress year after year due to lack of funding, etc. Even if he had funding, research is painfully slow and remember he is only one single lab.

When I see interviews of well funded researchers in other diseases when they give updates from the year or two before it’s typically not a big leap at all once you filter through the excitement and optimistic hyperbole lab heads typically exhibit. When the dust settles it’s just very incremental progress.

The way things happen somewhat faster is when there are like 30+ very well funded labs in a hyper-competitive environment racing to beat each other. Not like what see with ME currently.

So to be blunt but realistic, it is much more likely that it will take many years to decades before we have some actionable answers and potential treatments.

The only way this could be shortcut, which is low probability, is by almost happy accident finding some already FDA approved drug that works or e.g. there is some miracle shortcut like long COVID research answering something that applies to us. But via the slow march of basic research happening currently in ME world this is going to take forever.

Im in my mid 40s and have come terms that there will probably not be an effective treatment that comes before I’m already old. ME already makes me feel everyday like I’m 90 years old so what difference will it make then.

 

I attended a presentation last year at a university, and the researcher lamented that with 50 millions funding for dementia, they could’t do much.

To me it reflects on the additional barriers we are facing in the field of ME, the paucity of researchers, the stigma, the lack of funding. Maybe COVID (and the fact that many will not recover) will change that.

 

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Prof Jonas Bergquist will be giving a zoom talk on Tuesday, 6 April. The talk will be approx 30 minutes long, in Swedish, and is free. It's part of UppTalk Weekly, an educational popular science seminar series, hosted by Uppsala University.

UppTalk Weekly: Hopp för patienter med ME - en av världens mest funktionsnedsättande sjukdomar
https://www.upptech.uu.se/kalendarium/evenemang/?eventId=59482

 

It was a great talk No new info, though.

 

Thanks @mango I was a few minutes late, and the zoom room had reached its limit of 300 participants, so couldn't access the talk. Seems there's been a lot of interest, so maybe they'll do this again sometime

 

They recorded the talk, but didn't say if they will make the recording available online. I made an audio recording, I'd be happy to send you a copy of the file (mp3), if you'd like

 

That's very kind of you. I saw that there were 1.1 K attendees on the Facebook event for this talk. The previous event had about 120 participants. Perhaps they'll decide to share today's recording as the interest was so big? If not, it would be great to hear your audio recording, so thank you so much for your offer.

 

Dear Mango, Would you be able, or someone else, to sort of give the thesis of his talk, in a sentence or two. And where exactly is the "hope' for ME? I am finding that hard, if there is no new info. Thanks in advance.

 

A brief overview of what ME is, symptoms, mentioned how ill severely ill people can be, what bodily systems seem to be involved. Mentioned a few of his studies including the covid/long covid ones, the collaboration with the other four research centres etc. Explained what biomarkers are and why they are important. Etc. Sorry, I don't remember...

The "hope" was that there are people studying the disease, more attention/ME and pwME are more visible in media nowadays, that there is a bit more acceptance among healthcare professionals(?),...

ETA: And the news about increased research funding in the Netherlands. He also mentioned that he has been trying to collect stories from pwME who have recovered, but he has found too few people to see any kind of pattern/draw any conclusions.

 

https://www.youtube.com/watch?v=413AtUFI8-U

 

Oh it's already out. That's great. Thanks @mango for sharing.

May I ask where you found the link? I see it's the University that has uploaded it on their YouTube channel, but as an unlisted video and I wonder if it's ok to share the link further on social media.

 

A friend sent the link to me. I don't know how or where she found it. I can ask her.

 

I checked the event's Facebook page, the Youtube video is linked from there. Definitely ok to share widely

 

Either they don't like it being shared, or it's geolocked, or the internet gods are....

What I see when looking at the pane immediately above this post.

 

Does this one work better?

Code:

https://facebook.com/events/s/upptalk-weekly-hopp-for-patien/796327860969927/

 

It works, which is better

 

I can only find a link to their general YouTube channel of the Upptalks, but not the unlisted video with today's talk on the facebook event.

But they write that they will add subtitles to today's talk and upload it within a week. So a more official upload is on its way