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ME researcher Jonas Bergquist - interviews, talks

Discussion in 'ME/CFS research news' started by Sly Saint, Nov 17, 2020.

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  1. Hutan

    Hutan Moderator Staff Member

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    Hutan, Mar 10, 2022
    #41
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  2. mango

    mango Senior Member (Voting Rights)

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    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."

     
    Last edited by a moderator: Apr 28, 2022
    mango, Apr 28, 2022
    #42
    Hutan and MEMarge like this.
  3. mango

    mango Senior Member (Voting Rights)

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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
    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/
     
    mango, Apr 28, 2022
    #43
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  4. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Jaybee00, May 3, 2022
    #44
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  5. mango

    mango Senior Member (Voting Rights)

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    mango, May 12, 2022
    #45
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  6. mango

    mango Senior Member (Voting Rights)

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    mango, May 29, 2022
    #46
    Trish likes this.
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    “- 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.
     
    Last edited by a moderator: May 29, 2022
    Jaybee00, May 29, 2022
    #47
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  8. Hutan

    Hutan Moderator Staff Member

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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]
     
    Last edited: May 30, 2022
    Hutan, May 30, 2022
    #48
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  9. Braganca

    Braganca Senior Member (Voting Rights)

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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.
     
    Braganca, May 30, 2022
    #49
    cfsandmore and Hutan like this.
  10. Hutan

    Hutan Moderator Staff Member

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    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.
     
    Hutan, May 30, 2022
    #50
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  11. mango

    mango Senior Member (Voting Rights)

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    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

     
    Last edited: Apr 24, 2023
    mango, Apr 23, 2023
    #51
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  12. Perrier

    Perrier Senior Member (Voting Rights)

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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, Apr 25, 2023
    #52
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  13. Hubris

    Hubris Senior Member (Voting Rights)

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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, Apr 25, 2023
    #53
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  14. Sean

    Sean Moderator Staff Member

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    Yep, it is beyond ridiculous that some of the more plausible, obvious, and easily tested possibilities are either not tested properly, or just ignored completely.
     
    Sean, Apr 25, 2023
    #54
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  15. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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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, Apr 25, 2023
    #55
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  16. Kitty

    Kitty Senior Member (Voting Rights)

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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.
     
    Kitty, Apr 25, 2023
    #56
    bobbler, RedFox, Arnie Pye and 1 other person like this.
  17. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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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, Apr 25, 2023
    #57
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  18. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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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.
     
    Arnie Pye, Apr 25, 2023
    #58
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  19. mango

    mango Senior Member (Voting Rights)

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    mango, Jun 4, 2023
    #59
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  20. mango

    mango Senior Member (Voting Rights)

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    Last edited: Jul 17, 2023
    mango, Jul 17, 2023
    #60
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