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Sweden: Webinar 'Half-time control' Bragee December 2020

Discussion in 'ME/CFS research news' started by mango, Dec 11, 2020.

  1. mango

    mango Senior Member (Voting Rights)

    The following zoom seminar is open to the public, in English, and starts in less then 10 minutes at time of posting this:

    Half-time control: Björn Bragée

    Welcome to attend the half-time control for Björn Bragée, December 11 at 12.30 pm. Due to the current situation, the meeting will be held online via Zoom.

    "Clinical findings in Pain, Exhaustion Syndrome and ME/CFS"

    Main Supervisor
    Bo C Bertilson, PhD., Karolinska Institutet, Department of Neurobiology, Care Sciences and Society

    Mahmood Ahmed, docent, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society

    Half-time committee
    Sture Eriksson, associated professor, Umeå University, Department of Community Medicine and Rehabilitation
    Maria Hagströmer, professor, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society
    Mona Esbjörnsson, docent, Karolinska Institutet, Department of Laboratory Medicine

    Pleas join by Zoom:

    [... new link! see mango's post below]


    Last edited: Dec 11, 2020
  2. mango

    mango Senior Member (Voting Rights)

  3. mango

    mango Senior Member (Voting Rights)

    The intro is in Swedish apparently, but they will switch to English for the presentation, they say.
  4. mango

    mango Senior Member (Voting Rights)

  5. mango

    mango Senior Member (Voting Rights)

  6. mango

    mango Senior Member (Voting Rights)

  7. mango

    mango Senior Member (Voting Rights)

    Image 2020-12-11 13 01 17.png
    Image 2020-12-11 13 02 19.png
    Image 2020-12-11 13 03 06.png
    Image 2020-12-11 13 03 37.png
    Each patient have answered about 1000 questions.

    Image 2020-12-11 13 05 29.png

    Image 2020-12-11 13 06 11.png
  8. mango

    mango Senior Member (Voting Rights)

  9. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    Thanks very much @mango

    From the slides, I have the following comments:
    • the inclusion of 'exhaustion syndrome' or 'burnout' alongside ME/CFS in studies seems odd. I imagine 'burnout' could be actually many things. A slide says 'Burden of these studied diseases: patients have the lowest scores of quality of life compared with other groups of patients with chronic diseases, including cancer'. This grouping of ME/CFS with burnout seems to invite skepticism of the seriousness of ME/CFS or suggest patients with ME/CFS are over-dramatising their illness.
    • 'all studied disorders are syndromes with criteria' - reinforces the idea that ME/CFS is a 'made-up' or 'fashionable' illnesses if 'burnout' has the same status.
    • Female predominance is noted for all syndromes
    • the Bragee study is noted as confirming hypermobility, intracranial hypertension and craniocervical obstructions as being over-represented in ME/CFS
    • good to see recognition of the issue of people acting on the findings of the Bragee study (slide 11) (the laymen interpretations are too presumptuous on surgery and treatment)
    • there is a desire to confirm the intracranial hypertension findings, which is good
    • this is underway with ethical approval achieved - 40 ME/CFS, 40 controls looking at structural problems in the brainstem and cervical spine
    • recruitment selection seems likely to be a bias
    • includes MRI, lactate in brain, intracranial pressure

    • seeks to find relationships between pain thresholds and pressure, gender, and low quality of life for three 'conditions' - ME/CFS, burnout and diffuse pain
    • the investigation has been done, with the write-up remaining
    • I fear a study like that will be happy hunting ground for biases
    • previous investigations of pain threshold in ME/CFS taken together do not make a convincing case for differences with healthy populations

    • 'Other clinical findings in studied groups'
    • 2000 patients from the three conditions
    • includes a retrospective survey of 800 people answering questions on exposure to mould and damp, appears to be no controls - we've had that kind of study before, even with controls the retrospective nature results in findings that just muddy the waters. It's disappointing that this study was done, as it is likely to feed inappropriate interpretations by 'the laymen who happen to mostly be women'.
    • 'another part is a more precise description of the immense contact with health care all groups have' - this seems likely to suffer from recruitment bias. As in, over-sampling those who are in the stage of actively trying to find out what is wrong with them, and participating in trials, and under-sampling those who either initially or eventually do not spend much time in contact with health care.

    • a study aiming to 'elucidate the complex links between infections, immune defence and energy metabolism in ME/CFS or immunometabolomics with special regards to mitochondrial function
    • recruitment is underway
    • there's not enough detail on the slide to comment
    The statement 'the overall theme that binds these studies together in a kappa is the suggested importance of clinical exams and clinical findings related to gender, social factors and life quality' is vague but rings alarm bells. As does 'Is the presentation of biopsychosocial findings always in the patients interest, as the diagnosis is disputed and sometimes neglected in care and insurances'.

    @mango and others, did the presentation itself shed further light on the potential issues?
    Last edited: Dec 12, 2020
  10. mango

    mango Senior Member (Voting Rights)

    Bragée said in his talk that this work of his (the thesis, this series of research projects, I think he meant?) was only about pain and fatigue from the beginning. ME was only added much later.

    Mona Esbjörnsson suggested to him that maybe he should skip the pain bit and focus his thesis only on ME instead, since it is so underresearched.

    Re: burnout:
    Not much, no. Unfortunately. I'll go through my notes later, see if I have anything else to add.
  11. mango

    mango Senior Member (Voting Rights)

    Unfortunately the presentation was not recorded by KI, but I made an audio recording for my own personal use (because I'm too ill to listen to long talks, I have to listen back later, a few minutes at a time). I'd be happy to share it, if anybody wants to have a listen.
  12. Andy

    Andy Committee Member

    Hampshire, UK
    From the final slide, I thought this was an 'interesting' thing to put, especially under the title of "Some ethical issues". It seems to be coming from quite a superior 'researcher looking down on mere laymen (and laywomen)' point of view, but I might be mistaken not knowing the full context of it.
  13. mango

    mango Senior Member (Voting Rights)

    It was in this context:
    They didn't expand on it much, unfortunately. I'm glad they mentioned it, and I would have liked to see them discuss it a bit more in depth.
  14. mango

    mango Senior Member (Voting Rights)

    Some notes and comments. Please correct me if I got something wrong.

    Of the 2 500 people who have been referred to Bragée's clinic so far, 1 100 have gotten a ME diagnosis.

    Bragée mentioned that the contract states, as do the referral routines, that the people referred to the clinic has got to have what he calls "severe ME", meaning they are unable to work and their life situation is significantly affected, significantly affected socially. So, he claims that his studies are on "the very worst cases"... (I disagree.)

    Eriksson asked him if his cohort is representative for the whole patient group/"for that which he claims to be studying". Bragée replied that he believes that nearly everyone who shows up in primary care [in Stockholm region] with suspected ME gets a referral to Bragée ME-center or Stora Sköndal ME/CFS clinic. They have also searched for data in other register databases in Stockholm, to try and find out if there are people with undiagnosed ME. Therefore, he doesn't believe that there are many people in Stockholm who have ME, other than the ones who have already sought specialist care at these two clinics. (I have strong doubts about that.)

    Re: my earlier comment "this thesis and the series of research projects was only about pain and fatigue from the beginning. ME was only added much later." You really do notice it in the overwhelming focus on pain and fatigue, and the complete lack of mention of ME typical symptoms related to the immune system, cognitive symptoms and OI, for example. Anxiety and depression is mentioned a few times. PEM is barely mentioned, and we already knew the questionnaires the studies are based on don't capture PEM. Bragée also mentioned that the aim originally was to see if there are any differences between these patient groups, and what common things there are in the background etc.

    Hagströmer asked about how they plan and schedule the tests, in what order they do them etc, how they make sure that if you get tired after one test, that it doesn't affect the tests you do next.

    Several of them pointed out to Bragée that his schedule for the thesis might be unrealistic. Too many studies, too little time both to execute the work itself and to learn things as a doctoral student. They suggested that it might be better to simplify, work on restructuring it.

    Bragée said that he has started getting in "major contact" with neurosurgeons who are curious and want to know more. But he feels it's too early to start shouting from the rooftops, we need to find out more first.

    Bragée said that 70% of the patients who are referred to them, compared to 35% of the general population, have these craniocervical/spinal issues.

    They also talked about the reliability and validity of the various tests used in the studies (including interpreting scans etc). They commented on the fact that the majority of these studies is register-based research.

    They suggested that maybe Bragée should "spice up" the study titles and their aim/conclusion, to get more attention in the media.

    Bragée mentioned a study that has validated the results of his already published study. This new one isn't published yet but is available in preprint. It's by a research group in Sussex, England. He thinks it will get a lot of attention in the media.

    The database they are using for the research data is Excel. A couple of them suggested that Bragée should get proper statistics software and learn how to use them himself, instead of hiring others to do the analysis.

    At the very end, Esbjörnsson started talking about anti-vaxxers, and then went on to allege that "people with ME have a particular way of communicating with the world around them". She then asked Bragée how he is "fending that off", in order to "avoid getting sucked in emotionally", quickly adding that "you don't have to answer that right now", so we never got to hear his thoughts on that. :grumpy::grumpy::grumpy:

    Again, sorry if I misheard or misunderstood something. Please, always feel free to correct me.
    Last edited: Dec 12, 2020
  15. Anna H

    Anna H Senior Member (Voting Rights)

    Thank you @mango for sharing your notes and comments and recording the presentation! :hug: That's so valuable.

    I have just finished listening to it and you seem to have gotten everything right in your notes:thumbup:. I agree with your thoughts.
  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Thanks @mango!

    I understand that this started out as a pain and fatigue study and then evolved.

    It strikes me he doesn't understand pain in ME very well either. He refers to it as diffuse pain & it is true there is often a lot of what I call background noise with ME pain. It hurts all over and can be hard to describe where exactly hurts.

    However, with PEM, the pain location & type becomes very specific, clear and predictable. Ignoring that when looking at pain in ME is just plain daft.

    He also mentions increased sensitivity to pressure pain. It's unclear form the slide whether he's talking about the pressure point used to diagnose FM or simply applying touch or light pressure to the body.

    N=1 but despite ranking pain very high on my troubling symptoms list I am not sensitive to most of the FM pressure points at all - & believe me that rheumatologist really tried.

    While at times I can be very sensitive to the touch, next week the same area could well be numb. So to say increased sensitivity is to put your blinkers on before you start.
    Anna H, Sean, Michelle and 3 others like this.
  17. mango

    mango Senior Member (Voting Rights)

    I've been trying to find this preprint, but no luck so far. Does anyone have a link to share?

    If the info I have received is correct, it's by a researcher called Jessica Eccles.



    Here's one of her papers that is currently in preprint, but I doubt this is the one Bragée referred to in his talk.

    Beyond Bones - The Relevance of Variants of Connective Tissue (Hypermobility) To Fibromyalgia, ME/CFS and Controveries Surrounding Diagnostic Classification: An Observational Study
    Anna H, Michelle, cfsandmore and 2 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    I think it may well be the preprint you mention. Eccles is someone with a psychology training who, like Hans Knoop, has jumped on the hypermobility bandwagon. From what I have read of her stuff she has no idea of how science works. I suspect Bragee has overegged what her study tells us - which, as for his own, is that if you allow ascertainment bias to creep in you can prove whatever theory you want.

    Eccles uses the Beighton score as if a few hypermobility points were significant. But all the Beighton points are based on findings in the normal range so it is a nonsense if you are trying to make a link to major ligament problems.
    Anna H, Michelle, cfsandmore and 3 others like this.

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