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Norway - CFS/ME Research Conference Nov. 25th-26th 2019

Discussion in 'General ME/CFS news' started by Kalliope, Oct 22, 2019.

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  1. Trish

    Trish Moderator Staff Member

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    I watched the video.

    She talked at the start about the 2 day CPET, of which she has done a lot, some for research, and some to help people get disability benefits.

    Her recommendations were supposed to be for PEM, but most seemed to be general stuff for ME - a mix of 'evidence based' and 'anecdote based'. She didn't seem to make it very clear which was which.

    The recommendations include:

    Red light therapy - apparently used for sports people. She said it was evidence based, but I think that was for healthy sports people, not for ME.

    Quite a lot on foods - avoid 'inflammatory' foods like sugar, starch and gluten.
    Seed cycling - a cycle of ground up flax and pumpkin seeds to match the first half of the menstrual cycle, then sunflower and sesame. The rationale seemed to be about oestrogen, but she said it was for men and post menopausal women too using alternate 2 weeks of each. I don't think she mentioned evidence for this.
    She also listed 'good' foods.
    Intermittent fasting (do all your eating in an 8 hour slot each day).

    For OI - compression garments and mixed salts.

    For sleep - Testing for sleep apnoea.
    .............

    A bit about exercises which sounded OK - very short bursts of 10 seconds at a time with 40-60 seconds rest before repeating, focus on core strength first - she showed some diagrams.
    Pacing with heart rate monitoring, stay 10 beats below your anerobic threshold.
    ...................

    My general feeling is she should have stuck to her area of specialism. She is a sports science PhD, not a medical doctor. The stuff about 2 day CPET and exercises was good. The rest was a waste of time.

    Edit: Grammar
     
    Last edited: Dec 8, 2019
    Trish, Dec 8, 2019
    #21
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  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Thank you @Trish for a great summary. I thought she was an MD, and was a bit surprised by some of her advice.
     
    Kalliope, Dec 8, 2019
    #22
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I was really quite disappointed. She talked of 'evidence-based' treatment but I was unclear what she thought that meant. I got the impression it just meant biological theory based. The trouble is that the theories looked like pseudoscience and we did not have a scrap of evidence.

    For me this sort of uncritical approach casts quite a shadow on the faith one puts in the physiological work. Being critical is a habit. Either you have the habit or you don't.
     
    Jonathan Edwards, Dec 8, 2019
    #23
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  4. Trish

    Trish Moderator Staff Member

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    From looking at the program, this talk was not part of the science conference, it was part of the afternoon on PEM organised by the patients' organisation.

    Maybe that's why she didn't talk science but instead did a dumbed down 'here's some anecdotal stuff' talk. A wasted opportunity I think.
     
    Trish, Dec 8, 2019
    #24
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    She has done this before and I just wonder if she finds giving scientific talks intimidating. A lot of people do.
     
    Jonathan Edwards, Dec 8, 2019
    #25
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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Dec 8, 2019
    #26
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  7. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    This makes no sense to me because the anaerobic threshold is not based on heart rate. The metabolic threshold is dynamic and is related to the activity and intensity of the activity. (the anerobic threshold during typical activities is not related to lack of venous oxygen unless suffering from a severe cardiopulminary disease)
    Sustained (more than 10 seconds) maximal isometric contraction is primarily anaerobic without a high heart rate. Fin swimming can have relatively high heart rates without reaching an anaerobic threshold (due to the kinetics of the energy demands). The anerobic threshold as measured in CFS patients on a CPET can vary substantially by 10-20 BPM, depending on PEM.
     
    Snow Leopard, Dec 8, 2019
    #27
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  8. Trish

    Trish Moderator Staff Member

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    Thanks @Snow Leopard. I hope I didn't misrepresent what she said. It was written from memory, I didn't take notes of that bit.
     
    Trish, Dec 8, 2019
    #28
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Slides from the talks at the research conference are now available and free to share.

    I'll upload those that are in English.

    Attached are slides for:
    Studying known autoimmune risk genes in patients with CFS/ME - Riad Hajdarevic, Ullevål, Oslo University Hospital
     

    Attached Files:

    Kalliope, Dec 13, 2019
    #29
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  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for:
    Characterization of exosomal miRNA in CFS/ME - Anne Rydland, Oslo University Hospital, Oslo University
     

    Attached Files:

    Kalliope, Dec 13, 2019
    #30
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  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for:
    Update on treatments in ME/CFS: new perspectives and future directions - Dr. Jesus Castro-Marrero, Barcelona and Cornell Universities

    (file too big to be uploaded, will try to fix it later)
     
    Kalliope, Dec 13, 2019
    #31
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  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for:
    Searching for blood factors changes in ME/CFS - Fredrik Hoel, MD - University in Bergen
     

    Attached Files:

    Kalliope, Dec 13, 2019
    #32
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  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for:
    Chasing metabolic weaknesses in ME/CFS - Ina Katrine Nitschke Pettersen, University of Bergen

    (file too big, will fix later)
     
    Kalliope, Dec 13, 2019
    #33
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for:
    Effects and patient' experiences of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - a scoping review from the EU-Cost group EUROMENE network - Anne Marit Mengshoel
     

    Attached Files:

    Kalliope, Dec 13, 2019
    #34
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  15. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for:
    NIH Intramural Study on ME/CFS and external studies funded by the program - dr. Joseph J. Breen, NIH, USA
     

    Attached Files:

    Kalliope, Dec 13, 2019
    #35
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  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Attached are slides for
    Defective energy metabolism in ME/CFS - Karl Johan Tronstad, University in Bergen

    Som slides are in Norwegian, some in English
     

    Attached Files:

    Kalliope, Dec 13, 2019
    #36
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  17. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Interesting. The Norwegians are trying to find the blood factors that are affecting/causing the cellullar dysfunction. They list the following candidate molecules:

    FGF-21
    GDF-15
    C-Peptide

    GDF-15 just came up in another study by the UK Biobank.

    FGF-21 is another stress hormone involved in energy homeostasis.

    C-Peptide is a cleavage product of proinsulin and increases insulin sensitivity.
     
    Hoopoe, Dec 13, 2019
    #37
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  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    My apologies, but brain seems to refuse to understand how to downsize PDFs :ill:
     
    Kalliope, Dec 13, 2019
    #38
  19. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    If you want to send me the files, I can upload them to Dropbox and Mediafire

    tomkindlon at hotmail . com
     
    Tom Kindlon, Dec 13, 2019
    #39
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  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    That would be great! Very kind of you, @Tom Kindlon Thank you!
     
    Kalliope, Dec 13, 2019
    #40
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