ME researcher Jonas Bergquist - interviews, talks

Post copied from the News from Scandinavia thread.

OMF has scheduled a YouTube video to premiere on May 3, 2022.

"Dr. Jonas Bergquist updates on ME/CFS Research Progress! May Momentum Tuesdays 2022

Jonas Bergquist, MD, PhD, is OMF's Chief Medical Officer & Director of the Uppsala ME/CFS Collaborative Research Center (CRC). Today he shares updates from Uppsala CRC's #LongCOVID research study, findings from the cerebral spinal fluid of ME/CFS patients, and more."

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(Post copied from the News from Scandinavia thread.)

Jonas Bergquist on Swedish TV earlier this week:

Ny forskning: Snart kan det finnas ett test som visar om du har ME
https://www.tv4.se/artikel/6srgEVVz...an-det-finnas-ett-test-som-visar-om-du-har-me
Auto-translate said:
New research: there may soon be a test to see if you have ME

Interesting findings - "Very good things happening"

Let's talk about a topic we've been following for a long time: the disease ME and the research around it.

Because an ongoing study by ME researcher Jonas Bergquist has already shown interesting findings and could be one step closer to finding the biomarkers for the disease that the scientific community is looking for.

- There are a lot of good things happening," he says.

Jonas Bergquist, director of the ME/CFS Research Centre in Uppsala, talks about the progress in the video player above.
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Post/thread about the segment on Malou Efter Tio's Facebook page.

ETA: Forum thread about the study:
https://www.s4me.info/threads/sweden-me-cfs-lactate-glucose-and-hypoxanthine.21615/
 
“- There are major similarities around fatigue, but one difference we can see is that ME patients typically have no known lasting lung impact, unlike a larger proportion of post-covid patients.”


That’s because pre-Covid MECFS patients didn’t have acute lung damage from Covid Pneumonia! So if you had Covid and now meet the criteria for MECFS and you have lung damage then you have MECFS plus you have lung damage. I don’t think it’s that complicated.
 
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Jaybee00 said:
Video mentioned above by @mango is released. Again he mentions auto-immunity (but not in the CSF). Hoping @Jonathan Edwards could comment here since JE says no evidence for autoimmunity in MECFS.
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A 28 minute watch. There isn't a lot that is particularly meaty. Here's a summary of the bits I found interesting.

They have a substantial biobank of longitudinal samples from herpes simplex encephalopathy (HSE) patients - CSF, blood, urine, brain imaging, from infection to 2 years. They are monitoring inflammatory protein markers, cell damage protein markers, metabolites.

They are looking at auto antibodies in HSE, ME/CFS, Long Covid.
Patients affected by neurocognitive issues e.g. in HSE have auto antibodies against NMDA receptors. I think the inference was that these are not found in ME/CFS. However, they have found (in conjunction with Carmen Scheibenbogen's lab in Germany) that ME/CFS patients have auto antibodies against muscarinic receptors (involved in acetylcholine signalling) and beta-adrenergic receptors (involved in adrenergic neurotransmission). Bergquist seems very certain that these autoantibodies are upregulated in the blood. However, they haven't found them in the CSF (I think that is the news).

(Now, the muscarinic and beta-adrenergic auto antibodies finding was, I thought old news, and not very solid. In fact I have a memory (I might be wrong) of Scheibenbogen suggesting that rather than those autoantibodies being the defining feature of ME/CFS, it might be more that the receptors aren't working well for a range of reasons.)

Bergquist is happy about not finding the auto antibodies in the CSF, because the blood can be relatively easily cleaned of the auto antibodies, whereas it is harder to remove auto antibodies from CSF. So treatments such as plasmapheresis and immune adsorption can be used. Bergquist suggested that experiments have been done of these treatments with some success.

(Again, unless there has been a new study, I thought that success rates with these auto-antibody filtering treatments were underwhelming. I'd love this story to be true and maybe it is, but I don't think I've seen convincing evidence of it yet - and we've seen some evidence that suggests the idea is not right.)

13 mins
They have longitudinal samples (blood, urine, some CSF) from hospitalised patients with brain infections resulting from SARS-CoV2, other hospitalised patients with infections in other organs, and patients recovering from Covid-19 at home. There was some talk about what a unique opportunity the pandemic presents.

26 mins
What would Bergquist do to find the cure of ME/CFS if money was no object? - 'need to work even more on finding mechanisms, finding biomarkers, finding diagnostic, prognostic, therapeutic biomarkers' (Well, yes, that would be good.... But, I'd hope that the Chief Medical Officer of OMF might have shared some more specific ideas. And this need to work even more on finding mechanisms didn't seem to fit well with the expressed earlier certainty that there are specific auto-antibodies causing problems.)

Bergquist suggested that there is sufficient understanding to start initiating small trials of interventions that could be relevant. He mentions auto-immunity again.

[minor edits to fix typos]
 
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Thanks @Hutan.

Confused that he talked about studying patient populations that are not ME. Is the HSE study done in order to contribute to ME research in some way — as a comparison? Is that funded by OMF?

Same with the hospitalized patients. I think that was funded by OMF even though it’s not likely to be typical of long Covid patients. i found that frustrating too.
 
I had the same feeling. It would be good if researchers were clearer about where funding has come from for studies. I mean, I do understand that doing tangentially related studies can help fund infrastructure and staff, and help keep teams together. And results from those studies might happen to provide an insight relevant to ME/CFS. But, it would be good to know exactly which studies are OMF funded studies.
 
Nyhetsmorgon TV4, 23 April 2023. Video interview in Swedish (9 min 30 sec).

Ny forskning visar förändringar i hjärnan hos postcovidpatienter
https://www.tv4play.se/program/nyhetsmorgon/ny-forskning-visar-förändringar-i-hjärnan-hos-postcovidpatienter/20514422

mango said:
I've listened to this now. Jonas Bergquist did an excellent job! :thumbup:

(Bad PEM, sorry for all the mistakes.)

He said that there are imaging techniques (such as MRI) that show anatomical changes in the brain, and more selective imaging techniques that indicate inflammation in the brain. His team's research focus is studying the cerebrospinal fluid, which is produced in the middle of the brain and flows down through the brain and along the spinal canal. They are measuring biomarkers in the spinal fluid, and they show neuroinflammation, low-grade inflammation that can arise in the brain after infections like this.

Which means that they are starting to understand what is happening in the brain. It can be a part of the explaination for why some people suffer long-term consequences and what causes the disease.

He says that this is not a new phenomenon. There are texts written more than 100 years ago about various virus outbreaks, where patients have suffered long-term consequences.

You are a ME researcher too, are you surprised by these findings? No, not surprised but happy that things have moved forward this much. There are similarities with ME, which in some cases are caused by EBV infection. There are similarities in both blood and spinal fluid. Both diseases can maybe teach us something about the other disease.

What are the differences between ME and post covid? The infection that triggered them. But the symptoms are very similar. It's maybe a little too soon to say that they are the same, but there are big similarities. And they don't just affect the brain, but many organs in the body. There is a list with more than 200 symptoms than can arise after an infection like this.

Some doctors do not agree that this is a real diagnosis? It's not strange that there has been some skepticism. Before you understand something it's difficult to pinpoint it, and that includes treatment options too. You might be a bit unsure and then maybe also a bit careful to say that "this is a disease" or a syndrome, and so on. But he feels that the tone of the conversation has changed for the better now. We are starting to understand how many people are affected and how long-term and severe the consequences can be for some individuals.

Are there biomarkers in the blood too? Can you see them through a blood test? Depending on what organs are affected, it's more or less easy to see also in the blood. New studies have been published very recently where they can see that inflammation markers (the kind that control our immune system) change, and contrary to what one might have guessed some are lowered rather than increased. They are being pushed down as part of a non-functioning immune system.

Do we know how many people in Sweden have post covid? Very unreliable numbers. Globally there might be around 700-800 million people affected by covid infection. If 10% of them suffer consequences that last for more than 6 months, and if maybe 1% of them will suffer more long-term or chronic issues, then it means an absolutely massive group of patients.

What about treatments? There are symptom relieving treatments, depending on what your worst symptoms are. What symptoms are they, usually? Brain fog, neurocognitive issues, lung damage, GI issues, cardiovascular regulation problems. You can get some pharmacological support. There is still no cure, but interesting studies for example about drugs that dissolve micro clots that are impeding the bloodflow in the blood vessels, which might be a possible treatment option. Studies about antivirals show that if you can push down inactive virus particles (that exist in a resting state in our nerves, for examples), if you can decrease their activity it can partially lessen the inflammation too.

He says it's too early to tell what the solution will be. He thinks it probably won't be one solution for everyone, but rather a combination and a custom solution for each individual.

The presenter asks him how far away the solution might be? He doesn't answer, but starts talking about the good news from earlier this week, the government commissioning the National Board of Health and Welfare and the SBU etc.

So, the skepticism has been left behind? He hopes so. "There is much more we need to understand, but I believe that we need to do that with an open mind."
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mango said:
Nyhetsmorgon TV4, 23 April 2023. Video interview in Swedish (9 min 30 sec).

Ny forskning visar förändringar i hjärnan hos postcovidpatienter
https://www.tv4play.se/program/nyhetsmorgon/ny-forskning-visar-förändringar-i-hjärnan-hos-postcovidpatienter/20514422
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A number of ME patients have done apheresis to remove clots and this has not helped them with any improvement. Some have been on blood thinners as well. This is not a possible treatment, if he is suggesting this too. Very discouraging because it is looking like help is very far in the distance. From what a few researchers have said it also looks as if the anti-viral industry needs to get to work, because what is on the market is not as effective as it needs to be. Very discouraging, but a million thanks dear Mango for this update.
 
Perrier said:
A number of ME patients have done apheresis to remove clots and this has not helped them with any improvement. Some have been on blood thinners as well. This is not a possible treatment, if he is suggesting this too. Very discouraging because it is looking like help is very far in the distance. From what a few researchers have said it also looks as if the anti-viral industry needs to get to work, because what is on the market is not as effective as it needs to be. Very discouraging, but a million thanks dear Mango for this update.
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They keep talking about antivirals being potentially useful but never set up a study to figure out if that's actually true. It's been like this for decades. You don't need that many patients, just a blinded study with objective measurements. The NIH is doing a paxlovid study now because they are swimming in cash but in ME after 30 years of the same memes we still don't have a proper study on antivirals like valgacyclovir. Even 20 patients i would be happy with, just do the damn blinding and objective measures. There is never any progress on treatments, just the same "maybe this helps" for 30 years and not a single study to figure out if it's true.
 
Hubris said:
They keep talking about antivirals being potentially useful but never set up a study to figure out if that's actually true. It's been like this for decades.
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How many antivirals are there in existence and use at the moment? They certainly don't seem to be commonly used in the UK. I've never been prescribed one in my life (that I am aware of), and I'm damn sure that I've had a fair number of viruses. So what are they currently used for?
 
Arnie Pye said:
So what are they currently used for?
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Several are in use for Covid, although not commonly—I know this because I've been "identified" as someone who might benefit if they got infected (I've dodged it so far). They're also sometimes used for 'flu.

I suspect most people in the UK will never be offered one, because their use is restricted to higher-risk or specific cases. Looking at some of the potential side effects, I'm not sure that's at all a bad thing.
 
Jaybee00 said:
“- There are major similarities around fatigue, but one difference we can see is that ME patients typically have no known lasting lung impact, unlike a larger proportion of post-covid patients.”


That’s because pre-Covid MECFS patients didn’t have acute lung damage from Covid Pneumonia! So if you had Covid and now meet the criteria for MECFS and you have lung damage then you have MECFS plus you have lung damage. I don’t think it’s that complicated.
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That didn't stop Breathing Therapists from diagnosing people with ME as having the same sort of Dysfunctional Breathing as they are doing in some of the LC Clinics.

The majority of people on the LC Facebook group I belong to aren't being diagnosed with any other lung problem apart from this dysfunctional breathing which they are being told is due to using the wrong muscles and cured by exercises.
 
ukxmrv said:
The majority of people on the LC Facebook group I belong to aren't being diagnosed with any other lung problem apart from this dysfunctional breathing which they are being told is due to using the wrong muscles and cured by exercises.
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I've been diagnosed with dysfunctional breathing - this was at least 15 years ago. I was hyperventilating and didn't know how to overcome it. I think it was triggered by being iron deficient/anaemic and hence breathless. I found the exercises I was taught very helpful. But they had no effect whatsoever on any other symptoms I had.
 
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