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Digital ME conference in Stryn, Norway April 13-14th 2021

Discussion in 'General ME/CFS news' started by Kalliope, Jan 27, 2021.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This is a private initiative from a family who has previously organised two large conferences in Stryn, Norway. They also do fundraising for biomedical research into ME. All money goes to Fluge, Mella and their team at Haukeland University Hospital. (more about their fundraising in English here).

    The conference has its own website. There's a section in English with invitation, programme, welcome and about the lecturers:
    https://www.mekonferansestryn.no/kopi-av-english-translation

    Tickets for the conference will be available for purchase soon.

    Lectures:
    • Journalist and academic at the School of Public Health at the University of California, Berkeley: David Tuller: «A critical look at the methods in the PACE study, Norwegian cognitive behavioral therapy combined with music therapy for chronic fatigue after Epstein-Barr virus infection among youth and the portrayal of ME/CFS in Norwegian media. Video – Language: English

    • ME researcher, immunologist and professor of Epidemiology at Columbia University, New York: Mady Hornig: «Robust evidence for ME/CFS as a biological disease - distinct immune signatures in the cerebrospinal fluid in ME suggesting immune dysregulation in the central nervous system as a function of sub-group and disease course». Video – Language: English
    • Specialist in Anesthesiology / Intensive care and pain relief, Bragée clinics, Stockholm: Björn Bragée: «Research and a published study that indicates there's a coexistence of hypermobility and constriction of the neck column. Examination of the brain and the cervical spine by magnetic resonance imaging (MR). Constriction of the cervical spine. Changes in the optic nerve that can indicate an increased pressure in the fluid surrounding the brain». Language: Swedish

    • Professor of Analytical chemistry and Neurochemistry at the Institute of chemistry- Biomedical Center at Uppsala University in Sweden: Jonas Bergquist «Molecular diagnosis and treatment of ME/CFS – analysis of cerebrospinal fluid as a unique source for Neurochemical biomarkers for ME/CFS». Research on COVID-19 might produce important information on the research on ME. Language: Swedish

    • Professor at the Institute for Biomedicine. the University of Bergen: Karl Johan Tronstad: «Does ME/CFS stem from energy failure in the body's cells?» - research on Energy metabolism. Language: Norwegian

    • Doctor at the Department for cancer treatment and medicinal physics at Haukeland University Hospital, Phd- at the University of Bergen: Ingrid Gurvin Rekeland
      Doctor at the Department for cancer treatment and medicinal physics at Haukeland University Hospital, Professor at the University of Bergen: Øystein Fluge:
      «Medicinal treatment and bio-markers in regards to ME/CFS» Language: Norwegian

    • Professor of Child neurology, at the Children's clinic at Haukeland University Hospital: Kristian Sommerfelt: «Pitfalls and useful strategies during diagnosis and follow-up treatment». ME research and prognosis among children and the young. Language: Norwegian

    • Professor Emeritus in Pediatrics, researched at the University of Oslo: Ola Didrik Saugstad «A new light on ME» - summary of the latest bio-medicinal research findings.

    • Research journalist and author: Jørgen Jelstad: «ME – The development in regards to research, the general view on ME and funding for bio-medicinal research through decades».

    • Professor in Pediatrics at Oslo University Hospital: Ola Didrik Saugstad «The ImmunoME study at Oslo University Hospital» about immunology and genetics in regards to ME - published research findings and the findings of possible subgroups. Language: Norwegian

    • Doctor in specialized education and scholarship holder at the University Hospital in Northern Norway (UNN) Harstad: Linn Christin Skevling «The research project Fecal microbiota transplantation - a blind placebo study, which is an update from The Comeback Study”. Is there a possibility that ME can be caused by a disturbance in the natural intestinal flora, that has been shown to have a different composition, compared to the composition among healthy people? Findings of increased markers in the immune system that might be a sign of bacterial products leaking from the intestines. Language: Norwegian

    • Senior researcher at Sintef, the Department of Health, Project Manager for «The Services and ME»: Line Melby Services and the service needs: An analysis of the mismatch between the existing services for ME-pasients, and what they acually need. Language: Norwegian

    • Researcher at Fafo: Anne Kielland The research project «Tjenesten og Meg; trendar i brukaropplevingar» «The Services and ME; trends in the experiences of pasients» Language: Norwegian
     
    lycaena, merylg, ukxmrv and 17 others like this.
  2. Midnattsol

    Midnattsol Moderator Staff Member

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    Do you know how much a ticket will cost, @Kalliope?
     
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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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  4. Midnattsol

    Midnattsol Moderator Staff Member

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    Thanks, I missed it :)
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    To facilitate sharing:
    Code:
    https://twitter.com/TomKindlon/status/1354479483382861824
    Code:
    https://twitter.com/TomKindlon/status/1354480760124796930
     
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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    As part of the conference, a video interview has been made with paediatric neurologist professor Kristian Sommerfelt, PHD candidate Ingrid G. Rekeland and professor Øystein Fluge. The interview is made by journalist and TV documentarist Paal Schaathun.

    https://www.mekonferansestryn.no/videointervju

    Very interesting! Here's a summary:

    Prof. Kristian Sommerfelt

    He thinks the health care system is slow to capture the severeness of the disease. Particularly hospitals. Schools and GPs are much better. This is because the schools are seeing the pupils every day, and know the pupil both before and after they develop ME.

    Also GPs are more often in contact with patients than the hospitals. It's much more difficult for hospital doctors. They see the patient once and for a short time. Tests are fine and the patient might look perfectly well. Patients are very good at coping, so if you ask how they're doing they say fine. So you have to ask differently. For instance: is there anything hindering you from living your life normally as you used to?

    The patient will immediately notice if he/she is not believed, including children.

    There is an improvement in schools regarding ME particularly in the last few years. Sommerfelt explains this among other as due to a course for schools developed by the Norwegian ME Association - Rogaland on adaptation of teaching of pupils with ME, which is quite pragmatic and to the point.

    ME is much more visible in school-age patients than in adults. Adult patients are more hidden from society, but not pupils.

    1 of 200 people have ME.

    He teaches medicine students about ME. When he asks if anyone knows someone with ME 1/3 says yes. 1/3 says they know someone who knows someone with ME. He sees an openness to ME and knowledge in many of the students, but sometimes also scepticism.


    Ingrid G. Rekeland, MD
    She works as an oncologist at Haukeland University Hospital and she also has a 50% position as a PhD candidate where she does research into ME.

    The negative RituxME trial overshadowed a bit the positive CycloME trial. Many people thought that ME could not have to do with the immune system after the negative RituxME trial. But Rituximab is a completely different drug, Cyclophosphamide is not as specific and attacks all cells that divides. 55% of the patients in CycloME improved. Many still had effect after 4 years, but some had also relapsed.

    They were not surprised by the good results from the CycloME trial, as they'd heard from several cancer patients with ME improving from ME symptoms by cancer treatment with Cyclophosphamide.

    If their hypothesis is correct, that one can manipulate the immune system and influence the disease, there are other drugs to try and they are working on that.

    Professor Øystein Fluge
    RituxME was clearly negative and they need to take the consequences of that, but the principle behind might still be relevant. They believe some patients might benefit from Rituximab, and that they owe it to the patients to go through all data thoroughly, take a step back and reorientate.

    We need more knowledge about what is a natural disease course for ME. They have applied for approval to get in touch with trial participants to collect data on how they've been doing over a longer period.

    Despite the severity of the disease and the costs for society, this field has not been prioritised. There is zero activity from the pharmaceutical industry. The disease has a great impact for the patients and their families. This gives reason to continue the work, and they will keep trying as long as they are funded.

    They hope to be able to start a new intervention trial. Inclusion criteria must be improved based on knowledge on natural disease course. Develop objective end points, and finding target interventions. If this is a disease that involves the B-cells/plasma-cells/autoantibodies that influences the body, this might be a natural target point to try to intervene. They have some drug candidates in mind, but they are not ready quite yet to start a new trial.

    They've written a paper on their hypothesis on what is the main mechanism behind ME which will soon be published.
     
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  7. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thanks for the summary @Kalliope
     
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  8. Marky

    Marky Senior Member (Voting Rights)

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    Merged thread

    Fluge was interviewed by norwegian journalist Pål Schaatun in the context of the recently held Stryn ME-conference (https://www.mekonferansestryn.no/videointervju, no subtitles).

    He said at the end that they are currently looking into ways to target long lived plasma cells

    This is something we have discussed at lengths at the old forum, i didnt find the thread though, but involved Jonathan Edwards and others.

    He also said that he thinks some people actually got an effect from Rituximab, even though obviously that multi center was negative. I think the same.

    When asked if they considered stopping researching ME after the negative trials, he said that is not how research works <3

    I am extremely pleased to hear this personally. Not only cause I still think ME could be autoimmune, but because I dont see many other ME-researchers actively pursue realistic treatments.

    Have a good day
     
    Last edited by a moderator: Apr 24, 2021
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  9. Ron

    Ron Established Member (Voting Rights)

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    I also liked this comment from Dr. Fluge:

    "They've written a paper on their hypothesis on what is the main mechanism behind ME which will soon be published."

    I'm looking forward to seeing their updated thoughts on the mechanism.
     
  10. Grigor

    Grigor Senior Member (Voting Rights)

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    Looks really interesting. Sadly no subtitles indeed...
     
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  11. Marky

    Marky Senior Member (Voting Rights)

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    I can do an transcription tomorrow mate:emoji_call_me:
     
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  12. Grigor

    Grigor Senior Member (Voting Rights)

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    Oh that's super cool. Lots of work though but I think more people would love to know! Thanks in advance!
     
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  13. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Thanks—Did he say anything about cyclophosphamide/further trials?
     
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  14. deleder2k

    deleder2k Established Member

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    @Marky, interesting. Perhaps Obinituzumab will be used...? I asked Fluge about this 6 years ago. He said they were looking into it and other drugs that killed b-cells and memory b-cells. I think it was prof. Edwards that said it was like an atomic bomb compared to Rituximab.
     
    Last edited: Apr 22, 2021
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  15. Marky

    Marky Senior Member (Voting Rights)

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    Perhaps! Yea i remember that discussion. Ill try to find it again later. It kinda is i guess, a lot of these long lived plasma cells are healthy and protecting us from various infections.
     
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  16. Hutan

    Hutan Moderator Staff Member

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  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    Great, thanks, @Kalliope. I'll look forward to reading the English version.
     
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  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    An English report from this conference is now available

    "The report contains an introductory part first with a few words from the organizer. Then comes the report about the lecturers who participated.

    The professional conference:
    David Tuller
    Mady Hornig
    Björn Bragée
    Jonas Bergquist
    Karl Johan Tronstad
    Ingrid Gurvin Rekeland
    Øystein Fluge
    Kristian Sommerfelt
    Ola Didrik Saugstad
    Linn Christin Skjevling
    Line Melby
    Anne Kielland

    Evening lecture:
    Ola Didrik Saugstad
    Jørgen Jelstad"

    https://www.mekonferansestryn.no/rapportfrakonferansen2021
     
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  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    According to the organisers, subtitles for the interviews are on the way!

     
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