ME researcher Jonas Bergquist - interviews, talks

Kalliope said:
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 :)
Click to expand...
Did you click the link to their YouTube playlist in their comment in the discussion section of the Facebook event page? It's the last video on that playlist, if you scroll down.

Screenshot_20210406-210633_Lite.jpg
 
mango said:
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.
Click to expand...
What I find very hard is the absence of time lines. Imagine Moderna or Phizer talking without time lines. And I don't even mean large ones, but small ones. Like we will have this ready by this date, and that by that date. But it's all just 'one day.' For those who are very severe, and severe, and bed bound and unable to shake off flu feeling, sick feeling, toxic feeling around the clock, it is just a touch precious to think they will find hope from media coverage--though please do not misunderstand--it is very important and finally present. There is never any urgency in the talk (like say when you listen to Phizer, etc),which leads me to feel, I repeat feel, that the devastating agony of this condition is just not adequately perceived (except by Dr. Davis, and Hanson and Klimas and maybe a couple of others.) I understand this is a minority opinion, and I may be told I am not 'grateful,' but there isn't even real symptom relief.
 
Last edited:
mango said:
Ok. It takes me to a playlist on their YouTube channel. If I scroll down, Jonas's video is at the very bottom.
Click to expand...
Yes, there it was!! Sorry, I didn't see it, it was just right in front of me :rolleyes: Thanks again!! All good.
 
Perrier said:
What I find very hard is the absence of time lines. Imagine Moderna or Phizer talking without time lines. And I don't even mean large ones, but small ones. Like we will have this ready by this date, and that by that date. But it's all just 'one day.' For those who are very severe, and severe, and bed bound and unable to shake off flu feeling, sick feeling, toxic feeling around the clock, it is just a touch precious to think they will find hope from media coverage--though please do not misunderstand--it is very important and finally present. There is never any urgency in the talk (like say when you listen to Phizer, etc),which leads me to feel, I repeat feel, that the devastating agony of this condition is just not adequately perceived (except for Dr. Davis, and Hanson and Klimas and maybe a couple of others.) I understand this is a minority opinion, and I may be told I am not 'grateful,' but there isn't even real symptom relief.
Click to expand...
I understand. They didn't explain why they chose to focus on "hope" in the title.

Personally, I feel like the focus on "hope" is often really problematic. Especially when patient organisations prioritise "spreading hope" above everything else, leading to them censoring so called "negative" comments and withholding facts and other information from their members and in the public debate/in the media etc. I'd call it a form of toxic positivity. How can you create meaningful change if you don't first face the "hopeless" reality?

The things Jonas suggested as reasons for hope (media attention, supposed changes in attitude etc) does not give me hope. ME specialist clinics are closing down, and I personally have seen no signs of stigma, discrimination or ignorance lessening. Actions speak louder than words,...

Jonas addressed the time line issue, sort of. He said jokingly that the answer to the question "when" is often "5 years", because it's far enough into the future that by then no one will remember what you said about the time line...
 
Last edited:
I mean it might be very hopeful for someone coming new to an interest in the research
But doesn’t chime with me unless there is something that’s actually a development

he doesn’t realise we do remember

not saying I don’t appreciate the work....
 
mango said:
I understand. They didn't explain why they chose to focus on "hope" in the title.

Personally, I feel like the focus on "hope" is often really problematic. Especially when patient organisations prioritise "spreading hope" above everything else, leading to them censoring so called "negative" comments and withholding facts and other information from their members and in the public debate/in the media etc. I'd call it a form of toxic positivity. How can you create meaningful change if you don't first face the "hopeless" reality?

Jonas addressed the time line issue, sort of. He said jokingly that the answer to the question "when" is often "5 years", because it's far enough into the future that by then no one will remember what you said about the time line...
Click to expand...
Mango, I agree entirely with your first two paragraphs. Entirely. The last statement, if it was stated, is irresponsible and cruel (again my view). The very sick hang on every word. In my profession I had a time line, always. If I did not meet it, i had to explain and then try to meet a new one. But this, 'one day' business is actually a form of torture. Prisoners are given time lines, and it is well known that one form of torture during incarceration is to keep changing the time line, or not giving one. This is well studied.
 
Jonas said something at the end about talking about chronic illnesses, maybe Kalliope can comment on that? I'm not able to rewatch, can't remember exactly what he said.

I got the impression between the lines that Jonas is aware that the hope and positivity is kind of contrived at this point, but that you "have to" make talks like this "optimistic" because people won't listen if it's too depressing?
 
Perrier said:
The last statement, if it was stated, is irresponsible and cruel (again my view).
Click to expand...
False hope is the absolute worst... :(

I don't think it's fair to say that severely ill people hang on to every word of hope, though. I believe we all get disillusioned, sooner or later. So many of us who have been ill for a long time have learnt this the hard way. Personally, talk of "hope" often has the opposite effect on me nowadays, it makes me sad... simply because I know it's not real.

I believe contrived "hope" in general often comes from some kind of short term thinking. People in general are uncomfortable witnessing other people's suffering, sadness, frustration and grief. They would do anything to make those "uncomfortable" feelings go away (including their own feelings of powerlessness etc), if only for a little while.

I completely agree about the lack of a sense of urgency. It is a problem. Personally, I'd rather see messages/talks focusing on urgency than hope.
 
Perrier said:
Mango, I agree entirely with your first two paragraphs. Entirely. The last statement, if it was stated, is irresponsible and cruel (again my view). The very sick hang on every word. In my profession I had a time line, always. If I did not meet it, i had to explain and then try to meet a new one. But this, 'one day' business is actually a form of torture. Prisoners are given time lines, and it is well known that one form of torture during incarceration is to keep changing the time line, or not giving one. This is well studied.
Click to expand...

I feel like it was a bit misparaphrased. Bergquist actually didn't give a timeline and pointed out the hypocrisy of giving the classic five year timeline as it's what doctors/researchers often think is far enough in the future so that nobody will remember in time. I actually do remember Ian Lipkin claiming there will be a breakthrough in 3-5 years... that was said in 2015. Bergquist more generally answered the question by saying that at least some hope can be brought from the increase in media attention around ME/CFS and doctors having a better awareness of the disease now.

The way I see it, if there is one thing that brought hope to my mind, it was the COVID-19 pandemic among all the misery it caused. The money that was recently granted to long COVID research in USA is probably the single biggest development in a long time.
 
JES said:
I feel like it was a bit misparaphrased. Bergquist actually didn't give a timeline and pointed out the hypocrisy of giving the classic five year timeline as it's what doctors/researchers often think is far enough in the future so that nobody will remember in time. I actually do remember Ian Lipkin claiming there will be a breakthrough in 3-5 years... that was said in 2015. Bergquist more generally answered the question by saying that at least some hope can be brought from the increase in media attention around ME/CFS and doctors having a better awareness of the disease now.
Click to expand...
Thank you so much for making this clear :) (I really shouldn't be posting after watching something, when my brain is fried...)
 
mango said:
False hope is the absolute worst... :(

I don't think it's fair to say that severely ill people hang on to every word of hope, though. I believe we all get disillusioned, sooner or later. So many of us who have been ill for a long time have learnt this the hard way. Personally, talk of "hope" often has the opposite effect on me nowadays, it makes me sad... simply because I know it's not real.

I believe contrived "hope" in general often comes from some kind of short term thinking. People in general are uncomfortable witnessing other people's suffering, sadness, frustration and grief. They would do anything to make those "uncomfortable" feelings go away (including their own feelings of powerlessness etc), if only for a little while.

I completely agree about the lack of a sense of urgency. It is a problem. Personally, I'd rather see messages/talks focusing on urgency than hope.
Click to expand...
Dear Mango, clearly I was not precise enough in my wording: what I meant when I said ill people hang on to every word---I meant that the sick listen to every word trying to get a glimpse of whether or not there is help forthcoming. That is what I meant. Most are no longer optimistic because there have been all sorts of promises, but there is something in the human spirit that truly would like to hear some good news to relieve such severe, such acute suffering. After all, the world of the extremely sick is full of loss, and pain, and agony, and very little else. I too would much prefer to see these researchers exhibit urgency. Gracious every day I listen to all kinds of global experts on Radio Canada, and they truly show urgency regarding Covid and the variants. Best wishes.
 
Last edited:
article:
Meet Jonas Bergquist, Professor of Analytical Chemistry and Neurochemistry at Uppsala University, in a conversation in the series UppTalk Weekly about ME (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) which is considered to be one of the world’s most debilitating illnesses. What are researchers doing to get closer to understanding the origins of the disease and how it can be treated?

In this episode of UppTalk Weekly Jonas Bergquist, Professor of Analytical Chemistry and Neurochemistry at the Department of Chemistry – BMC, talks about his research on the disease myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. It is a complex multi-systemic disease that affects the nervous system, the immune system, and energy production. There are currently an estimated 10,000 to 40,000 people in Sweden suffering from ME, the cause of which is yet to be discovered.

Nearly two years ago, Professor Jonas Bergquist was involved in starting a research centre in Uppsala, in collaboration with Stanford and Harvard among others, to try to get closer to solving the mystery of ME. At the centre, his research team is investigating whether there are certain biomarkers in the cerebrospinal fluid of ME patients that might reveal chronic neuroinflammation.

“By mapping the chemistry in the fluid surrounding the brain, we can better understand certain diseases that affect the central nervous system. We have also looked at whether there is an autoimmune aspect to it all, that is, the formation of antibodies against endogenous substances and the immune system being overactivated.”

As there is no general treatment model for ME, the disease is treated on an individual basis. The patient undergoes a detailed assessment to rule out other diseases and is given support to adapt their daily life. Currently, there is no medicinal cure, however, medication can provide some alleviation of the most severe symptoms.

There are also new treatment types, some of which involve low doses of steroids. One alternative treatment with quite promising results is gamma globulin injections. Surprisingly, this treatment is based on instilling antibodies and thus potentially triggering of immune system activity.

“Among the patients who have received this treatment, some have responded quite well to the treatment. The reasons for this are still unclear, but one possible explanation is that the body’s own immune system is diverted and provided with something else to work on for a period of time.”

Listen to the conversation “Hope for patients with ME – one of the world’s most debilitating diseases”
Click to expand...
https://www.miragenews.com/hope-for-patients-with-mecfs-546785/
 
You must log in or register to reply here.
Back
Top