COFFI - The international collaborative on fatigue following infection

[Trish]

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

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

Edit: The Coffi website address is now: https://www.coffi-collaborative.com/

 

[Cheshire]

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

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


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

 

[chrisb]

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.

 

[Valentijn]

What a fine selection of researchers!

My thought was more along the lines of "global BPS circle jerk."

 

[Andy]

Received 02 Nov 2016, Accepted 06 Jan 2018, Published online: 19 Jan 2018

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.

 

[Tom Kindlon]

 

[Denise]

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

 

[Trish]

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?

 

[Cheshire]

Does anyone have access to the full paper?

http://sci-hub.tw/http://www.tandfo...1080/21641846.2018.1426086?journalCode=rftg20

 

[Simon M]

Preliminary analyses indicated that risk factors for non-recovery from PIF included lower physical fitness

@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.

 

[lansbergen]

you can’t have an (unfixed) risk factor that occurs/is measured after the event.

I agree.

 

[Trish]

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

The underlying hypothesis of the post-infection research collaborative is that prolonged fatigue after infection is a consequence of genetic and environment effects, in which susceptible individuals who experience an acute infective illness develop alterations in the neurobehavioural and immunological systems which underpin the acute sickness response, leading to persistent fatigue and related symptoms.

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

 

[Kalliope]

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.

 

[Esther12]

A few bits from their 2015 meeting report:

Still waiting for any worthwhile data on this:

As yet unpublished data show clear differences in activity patterns among CFS patients, including the typical ‘boom and bust’ pattern (33%), but also showing patients who are ‘pervasively active’ (11%) or ‘pervasively inactive’ (22%).

Don't think I knew of this:

Cohort 8 – Professor Paul Little (UK) Professor Little was unable to attend the London meeting, but Professor Moss-Morris was able to describe this new prospective cohort study which includes an intervention for acutely (<3 months) fatigued patients presenting in primary care with acute sore throat, other acute infection, and no infectious cause. The study is being run by Professor Little at the University of Southampton, funded by an NIHR Programme Grant and the MRC (for sample storage).

Funding to start a new cohort would be a ‘tough act’, but research into chronic (post-infection) fatigue might make for a better case than research into CFS/ME.

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

Professor Katz currently sits on the special emphasis panel: chaired by experts; NIH budget very tight; 10-20% of grant applications are funded; proposed research needs to be highly innovative, but not too overloaded with technology as a substitute for focused research questions. NIH programme officer has been very helpful – Professor Katz to contact regarding funding for post-infection collaborative – doesn’t think that it has to be USA-centric. Leonard Jason would be a useful source of up-to-date information on US CFS funding opportunities.

 

[Jonathan Edwards]

I think this may be a posthumous publication.

 

[Snow Leopard]

I think this may be a posthumous publication.

I don't understand what you mean by this.

 

[Jonathan Edwards]

I don't understand what you mean by this.

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.

 

[Snow Leopard]

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.

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).

 

[Trish]

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.

 

[Milo]

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