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COFFI - The international collaborative on fatigue following infection

Discussion in 'News from organisations' started by Trish, Jan 20, 2018.

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  1. Andy

    Andy Committee Member

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    Their website indicates they are still somewhat active.

    Update 25th Feb 2020
    https://www.coffi-international.com/2020/02/publications-update/

    Update 5th July 2020
    https://www.coffi-international.com/2020/07/covid-19-and-chronic-fatigue/
     
    Andy, Oct 12, 2020
    #41
    inox, Michelle, Simon M and 4 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Does anyone know where the 4.2.2 quote is from? It looks like a different document to the one linked to.

    How grim that COFFI looks to be involved in covid related work.
     
    Esther12, Oct 12, 2020
    #42
    inox and MSEsperanza like this.
  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Just putting this here for reference:

     
    Snowdrop, Oct 12, 2020
    #43
    inox, MSEsperanza, cfsandmore and 3 others like this.
  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Long-term Effects of COVID-19 in Adolescents (LoTECA)

    Information provided by (Responsible Party):
    Vegard Wyller, University Hospital, Akershus

    Primary Outcome Measures:
    Fatigue [ Time Frame: 6 months follow-up ]
    Total sum score on the Chalder Fatigue Scale (range 0 - 33, lower scores means less fatigue, ie. better outcome)

    Study protocol:
    https://clinicaltrials.gov/ProvidedDocs/34/NCT04686734/Prot_000.pdf

    "Recent neurobiological studies suggest that PICF/CFS is related to misguided automatic and unconscious predictions.26,54

    "This alternative model is supported by evidence of psychosocial factors (such as negative life events and trait negative affectivity) being risk factors for long-lasting post-infectious conditions."

    References:
    26 = Kube T, et al. Clin Psychol Rev 2020;76:101829
    54 = Van Den Berg O, et al. Neurosci Biobehav Rev 2017;74:185-203.

    Posted on this thread because..

    National collaborative network and the COFFI collaborative
    As of March 2019, the consortium is chaired by Prof. Wyller; basic infrastructure (data managing, biobanking, statistical support) has been established, and will be made available for the present project.
    Edit: Seems they have a new website: https://www.coffi-collaborative.com/participatingcohorts

    :confused: :ill:

    @dave30th

    Edit 2: Perhaps someone should ask Retraction Watch to follow up the Wyller's music therapy story?

    This post has been copied, and posts discussing the study moved to a new thread:
    Study Protocol: Long-term Effects of COVID-19 in Adolescents (LoTECA), Wyller
     
    Last edited by a moderator: Feb 12, 2021
    MSEsperanza, Feb 10, 2021
    #44
    inox, Snow Leopard, lycaena and 6 others like this.
  5. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Searching the forum for something else, I stumbled across this discussion.

    I agree with Adrian and others here.

    In addition, it seems to be much easier to detect holes in psychosocial research, statistics and the like than in biomedical research. Perhaps more expertise on the subject per se is needed for the latter, i.e. not only knowledge of immunology, virology, endocrinology etc. but also how they work together in human physiology?

    Apologies for being off-topic. I just wonder why the only place that I'm aware of where overstated claims in biomedical research on ME currently get fair and rigorous criticism seems to be S4ME?

    Edited to add a 'currently'.
     
    Last edited: Aug 25, 2021
    MSEsperanza, Aug 25, 2021
    #45
    bobbler, inox, Snow Leopard and 3 others like this.
  6. Adrian

    Adrian Administrator Staff Member

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    I also think many more people have some background in stats as it comes up in so many different subjects and that helps. For example, my background is as a computer scientist including doing machine learning and some stats modelling (and looking at some cognitive science in that context). Where as the biological terms were largely new to me when I started looking at ME so there is much more background to learn.
     
    Adrian, Aug 25, 2021
    #46
    RedFox, MSEsperanza, Michelle and 3 others like this.
  7. Andy

    Andy Committee Member

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    Andy, Jan 28, 2022
    #47
    inox, RedFox, Trish and 1 other person like this.
  8. Andy

    Andy Committee Member

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    Looks like they have a new website, https://www.coffi-collaborative.com/

    where this has been spotted

    credit
     
    Andy, Feb 28, 2022
    #48
    inox, MEMarge, Sean and 8 others like this.
  9. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Looks like the team has been expanded, with for example, the Lymeprospect study and COVID-19 studies.
     
    ME/CFS Skeptic, Mar 1, 2022
    #49
    cfsandmore, MEMarge and Andy like this.
  10. Hutan

    Hutan Moderator Staff Member

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    Hutan, Oct 30, 2022
    #50
    bobbler, ladycatlover and RedFox like this.
  11. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Attached Files:

    MSEsperanza, Apr 26, 2023
    #51
    Hutan and Simone like this.
  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I think that once more shows that there should be rules with regard to what qualifies people to take an active role as a 'consumer' or patient partner in health research (e.g. not present anecdotes of recovery as evidence).

    Also, I think the most appropriate institutions to decide about rules are national and international umbrella organizations that officially represent people with disabilities and chronic illness, and people with ME/CFS need to be better represented there, too.
     
    Last edited: Apr 26, 2023
    MSEsperanza, Apr 26, 2023
    #52
    Hutan, bobbler, ladycatlover and 2 others like this.
  13. Trish

    Trish Moderator Staff Member

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    Garner is shockingly blind to the bias he brings to this. I note that all but one of the consumer advisory committee previously experienced post viral symptoms, so they are very far from representative. I think this is a concerning example of the way researchers can pay lip service to having consumer representation while only choosing those who support their views.
     
    Trish, Apr 26, 2023
    #53
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  14. Simone

    Simone Senior Member (Voting Rights)

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    Given there’s a typo on Daniel Forrest’s listing, it’s not possible to tell if it’s meant to read “affected by” or “previously affected by”. It’s possible that none of the committee currently experience symptoms.

    It’s a huge concern.
     
    Last edited: Apr 27, 2023
    Simone, Apr 27, 2023
    #54
    EzzieD, ME/CFS Skeptic, Trish and 6 others like this.
  15. bobbler

    bobbler Senior Member (Voting Rights)

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    The CAC committee - catchy


    and coming from a background of marketing I find their choice of the term 'consumer' and 'advisory' insightful. Demonstrates they see a third party relationship (marketing to others who might persuade the 'consumer' they have to do x based on 'apparently Paul said it cured him')/non-direct marketing, which is what I see them doing anyway basically nudge-city
     
    bobbler, Apr 27, 2023
    #55
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  16. Hutan

    Hutan Moderator Staff Member

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    2023 workshop. I'm sure a great time was had by all.
    e.g. Item 2: Why do more women suffer from PVS?

    These topics probably provide some clues on future research papers.
    e.g. Item 3: It is often said that attitudes to the illness may influence outcomes. Is it possible to measure these in advance?
    Item 8: Does the attitude of doctors influence outcomes?

    And some probably tell us about how they hope to use some recent papers that have come out
    e.g. that recent paediatric Long covid one with the WHO definition that found that everyone has a headache and gets a bit tired from time to time, and
    Item 9: Could we focus on young people and how best to inform them about what is happening?

    A whole section on mind-body mechanisms with Knoop.
    Ugh.
     
    Hutan, Apr 27, 2023
    #56
    Milo, bobbler, Wyva and 5 others like this.
  17. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Whichever it is I hope he recalls the warning from his previous writing —

     
    SNT Gatchaman, Apr 27, 2023
    #57
    MSEsperanza, bobbler, Wyva and 5 others like this.
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Last edited: Dec 16, 2023
    Dx Revision Watch, Dec 16, 2023
    #58
  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I note the COFFI Scientific Advisory Committee includes Chalder and Wessely:


    https://coffi-collaborative.com/scientific-advisory-committee

    The COFFI Scientific Advisory Committee include:

    Chair: Prof. Jos Van Der Meer, Radboud University Nijmegen Medical Centre, Netherlands
    Prof. Trudie Chalder, King's College London, United Kingdom
    Hon. A/Prof. Ute Vollmer-Conna, University of New South Wales, Sydney, Australia
    Prof. Simon Wessely, King's College London, United Kingdom
    Prof. Daniel Clauw, University of Michigan, USA
    Prof. Phil Peterson, University of Minnesota, USA
    Prof. Alastair Hay, University of Bristol, United Kingdom
     
    Dx Revision Watch, Dec 16, 2023
    #59
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  20. Trish

    Trish Moderator Staff Member

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    Hmm.
    Here's more about the seminars tweeted about by Paul Garner:

    https://www.coffi-collaborative.com...as-a-way-to-explain-chronic-fatigue-syndromes

    Live seminar: Mind-body, neural pathway disorders as a way to explain chronic fatigue syndromes.

    Consumer-researcher seminar series

    As people who have suffered these fatigue syndromes, the Consumer Advisory Group (CAG) to COFFI expressed the need for a scientifically informed dialogue to understand fatigue conditions biologically, and to examine possible routes to recovery. We wanted better understanding of the experts in COFFI and others in the field.

    The CAG met in June 2023 and first generated a series of questions for the scientists to help answer, in an iterative process to encourage dialogue and understanding on both sides. and then decided to open this up to a Consumer-Researcher seminar series on-line.

    We decided to open this up with a seminar series on-line, and the first of these was held in November 2023, and the links are below.

    Background

    As informed consumers, we were staggered to find that there is a huge literature out there on mind body, neural pathway disorders. This is in both popular self-help books, but also in specialist medical journals, and there isn’t a comprehensive synthesis that takes this all into account.

    .....

    The COFFI Consumer Group continues to explore this interesting area with the scientists and health professionals in COFFI. This is not under any pretext of pushing one particular interpretation of the causes of chronic fatigue syndromes or possible routes to recovery but opening up a sense of inquiry and dialogue.

    The first 2 seminars are linked.
     
    Trish, Dec 16, 2023
    #60
    Sean likes this.
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