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The international collaborative on fatigue following infection (COFFI) January 2018, Katz et al

Discussion in 'BioMedical ME/CFS Research' started by Trish, Jan 20, 2018.

  1. Trish

    Trish Moderator Staff Member

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    The international collaborative on fatigue following infection (COFFI)
    Ben Z Katz,Simon M Collin,Gabrielle Murphy,Rona Moss-Morris,Vegard Bruun Wyller,Knut-Arne Wensaas,Jeannine L.A. Hautvast,Chantal P Bleeker-Rovers,Ute Vollmer-Conna,Dedra Buchwald,Renée Taylor,Paul Little,Esther Crawley,Peter D White &Andrew Lloyd

    ABSTRACT

    Background: The purpose of the Collaborative on Fatigue Following Infection (COFFI) is for investigators of post-infection fatigue (PIF) and other syndromes to collaborate on these enigmatic and poorly understood conditions by studying relatively homogeneous populations with known infectious triggers. Utilising COFFI, pooled data and stored biosamples will support both epidemiological and laboratory research to better understand the etiology and risk factors for development and progression of PIF.

    Methods: COFFI consists of prospective cohorts from the UK, Netherlands, Norway, USA, New Zealand and Australia, with some cohorts closed and some open to recruitment. The 9 cohorts closed to recruitment total over 3000 participants, including nearly 1000 with infectious mononucleosis (IM), > 500 with Q fever, > 800 with giardiasis, > 600 with campylobacter gastroenteritis (CG), 190 with Legionnaires disease and 60 with Ross River virus. Follow-ups have been at least 6 months and up to 10 years. All studies use the Fukuda criteria for defining chronic fatigue syndrome (CFS).

    Results: Preliminary analyses indicated that risk factors for non-recovery from PIF included lower physical fitness, female gender, severity of the acute sickness response, and autonomic dysfunction.

    Conclusions: COFFI (https://internationalcoffi.wordpress.com/) is an international collaboration which should be able to answer questions based on pooled data that are not answerable in the individual cohorts. Possible questions may include the following: Do different infections trigger different PIF syndromes (e.g. CFS vs. irritable bowel syndrome)?; What are longitudinal predictors of PIF and its severity?

    http://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1426086?journalCode=rftg20
     
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  2. Cheshire

    Cheshire Moderator Staff Member

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    What a fine selection of researchers!
    Pity Per Fink and Michael Sharpe aren't there. A few Dutchmen would have been great too.
    :bag:

    Edit: For those who thought Esther Crawley was serious when she said ME is biological, her association with these people leaves no doubt...
     
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  3. chrisb

    chrisb Senior Member (Voting Rights)

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    How ironic. This should have been the direction of travel since 1989 when there was a paper saying aetiology is not important, and allowing for the broadening of criteria until research was meaningless. Done by anybody else.....

    Given discussion on a recent thread, suggestions as to what they can do with their COFFI are not encouraged.
     
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  4. Valentijn

    Valentijn Not a moderator

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    My thought was more along the lines of "global BPS circle jerk." :jawdrop:
     
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  5. Andy

    Andy Committee Member & Outreach

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    Why the hell would it take 14 months to get this accepted for publishing?

    I've used the Wayback Machine to capture all the pages on their website, including the minutes from their one and only recorded meeting.
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  7. Denise

    Denise Senior Member (Voting Rights)

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    I find it "interesting" that Ben Katz and Renee Taylor are in this group --- both are/have been collaborators with Lenny Jason....
     
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  8. Trish

    Trish Moderator Staff Member

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    A study like this, done properly, could have been very valuable for biomedical research. I fear the likes of Moss Morris, Crawley and White will twist it to their own ends.

    Does anyone have access to the full paper?
     
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  9. Cheshire

    Cheshire Moderator Staff Member

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  10. Simon M

    Simon M Senior Member (Voting Rights)

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    @Tom Kindlon point that fitness was measured post infection is lethal to the argument: you can’t have an (unfixed) risk factor that occurs/is measured after the event. Lower physical fitness is more likely to be linked to the severity of the acute infection, putting things in a very different light.

    That’s disappointing from the authors, and the reviewers who failed to pick it up. The basic idea behind this study is very interesting, but given the psychosocial illness beliefs of almost all the researchers, my fear is that this will not drive the science forward.
     
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  11. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I agree.
     
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  12. Trish

    Trish Moderator Staff Member

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    Just been reading their meeting minutes. The lead investigator is Peter White, and meeting organiser seems to be Crawley.

    Lots of BPS bullshit alongside a some biomedical findings or plans.
     
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  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Knut-Arne Wensaas was a new name for me. He's done research on the aftermaths of an outbreak of the parasite Giardia. He is currently working on a post doctorate project called "Irritable bowel syndrome and chronic fatigue following infection with Giardia lamblia. Premorbid factors and long-term consequences".

    Quite a few developed ME after an outbreak of Giardia in Bergen, Norway in 2004. I think this was the first time one was certain of the pathogen leading to an epidemic of ME, and some doctors/researchers had at least heard about the disease, so of course this was interesting to investigate. But my impression is that the researchers behind the projects on the long term consequences following this giardia-outbreak all had (have?) a biopsychosocial approach to ME.
     
    Last edited: Jan 20, 2018
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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    A few bits from their 2015 meeting report:

    Still waiting for any worthwhile data on this:

    Don't think I knew of this:

    I hope they don't/didn't get NIH funding:

     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think this may be a posthumous publication.
     
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  16. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I don't understand what you mean by this.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    A lot of water has flowed under the bridge since early 2016. I rather suspect Coffi may, like David Hume's great treatise, fall stillborn from the press.
     
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  18. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I somewhat disagree.

    There is value in following up these cohort studies to investigate factors that we currently lack evidence on, long term prognosis for example. Though they would ideally adopt fairly rigorous methods of defining recovery and estimating levels of disability, rather than the usual non-specific questionnaires that are not totally relevant in the context of ME or CFS...

    Pooling the results together makes the findings more reliable, hence the notable finding of psychological factors not being predictive factors of post viral fatigue when the studies are pooled together. (Also notable given that many of the researchers involved strongly believe that psychological factors play an important role).
     
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  19. Trish

    Trish Moderator Staff Member

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    I get the impression that this was another Crawley and White CMRC scheme of empire building and attempts to be world authorities and get lots of funding.

    They seem to have gathered a disparate group from around the world of studies already done and ones they hoped to get funded to do. All with different things being measured, some prospective, some retrospective, with different time scales etc., And aiming to draw them together and draw lots of BPS inferences from them to bolster their preconceptions.

    A few of the studies did some biomedical tests, but not enough to get any sort of overview, or to upset their BPS conclusions.
    This article I think just repeats the reports they gave each other at their one meeting in 2015.

    Looks like they have not progressed any further.
     
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  20. Milo

    Milo Senior Member (Voting Rights)

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    Anybody noticed Buchwald in there, the Seattle psychologizer and epidemiologist, also much involved in pelvic pain research and the ‘all in your head’ connection?
     
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