ME researcher Jonas Bergquist - interviews, talks

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.

 

That link takes me to their YouTube channel

https://www.youtube.com/playlist?list=PL4Xuwfw4Q6Dbw3FwMyDGIl8APiiIq54AI

 

Ok. It takes me to a playlist on their YouTube channel. If I scroll down, Jonas's video is at the very bottom.

 

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.

 

Yes, there it was!! Sorry, I didn't see it, it was just right in front of me Thanks again!! All good.

 

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...

 

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?

 

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.

 

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.

 

Thank you so much for making this clear (I really shouldn't be posting after watching something, when my brain is fried...)

 

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.

 

They've added subtitles in English!

https://www.youtube.com/watch?v=O2AT_xWpjnA

 

I tried to watch it and no subtitles appeared. Did omit to do something? Thanks

 

subtitles do appear for me - all I did was click on the video above.

 

Try clicking on the "CC" down to the right on the video?

 

Thanks I was able to read the subtitles. Does anyone recall what Jonas found in the spinal fluid? Thanks.

 

article:

https://www.miragenews.com/hope-for-patients-with-mecfs-546785/