COFFI - The international collaborative on fatigue following infection

I was surprised to see her name on this paper. Last I heard, she had left Seattle to work at Washington State University where she is (was?) a professor of public health and with an emphasis on Native American health.

I was hoping that she had left the ME/CFS research field permanently. Many patients have bad memories of her here in Seattle.
 
Andy said:
Why the hell would it take 14 months to get this accepted for publishing?
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That jumped out at me too. What would cause such a delay between submission and acceptance? It's interesting to reflect on how much things have moved on since this paper was submitted. No doubt it would have had more impact had it been published a year ago. Now it feels a bit like something whose time has already passed.
 
This post has been copled and following discussion moved to a new thread:
Open data and the role of citizen scientists in ME/CFS research

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p19:
Concept sheets – template completed and circulated among Steering Committee, dealt with out -of-session, decision made at Steering Committee meetings – first come, first served basis but with a time limit, e.g. 2 years; will need to have policy regarding public data access, e.g. ‘citizen scientists’, probably along lines of permitting access by bona fide researchers, but subject to confidentiality agreement and prioritizing internal applications.
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As far as I can establish Ben Katz, the first author, is doing a project on EBV in students with Ian Lipkin. It is posted as 'Dubbo goes to College' which is presumably why Andrew Lloyd is in the list. The Columbia study looks intelligent. Maybe this is an enthusiastic researcher reaching out for collaboration unaware of the complexities of the field. The citizen scientist bit may have been put in by Peter White before he finally gave up bothering.
 
Kalliope said:
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.
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https://totoneimbehl.wordpress.com/norske-forskningsstudier-pa-me/pi-giardiasis-og-me/
 
In the earlier study, 39 (13%) participants met criteria for CFS at 6 months, 22 (7%) met criteria at 12 months, and 13 (4%) met criteria at 24 months. Exercise tolerance testing at 6 months found no difference in peak work capacity between subjects with CFS and recovered controls , but adolescents with CFS had a lower degree of fitness and exercised less efficiently than the controls [19].
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It is quite disappointing that the following finding from the same cohort was not mentioned:

ACTIVITY LEVELS BEFORE AND DURING MONONUCLEOSIS

We hypothesized that, in the year before mononucleosis onset, adolescents who later developed CFS would have been more physically active than controls who experience a normal recovery from infection. This hypothesis was not supported. Findings from t tests revealed that adolescents who later developed CFS did not differ significantly from controls in their physical activity levels at 12 months before mononucleosis onset (Table 3).

Huang Y, Katz BZ, Mears C, Kielhofner GW, Taylor R. Postinfectious fatigue in adolescents and physical activity. Arch Pediatr Adolesc Med. 2010 Sep;164(9):803-9. doi: 10.1001/archpediatrics.2010.144.
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Information on activity levels before illness seems particularly relevant. Though it would have the limitation that it was based on self-report data.
 
Tom Kindlon said:
It is quite disappointing that the following finding from the same cohort was not mentioned:



Information on activity levels before illness seems particularly relevant. Though it would have the limitation that it was based on self-report data.
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I just posted this, for what it is worth.


I encourage other people to also use PubPeer, ideally with referenced comments.

Anyone who downloads the PubPeer extension e.g. for Google Chrome, gets alerted to comments in various places e.g. on the journal website itself:

http://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1426086
PubPeer link.PNG
 
Tom Kindlon said:
They have previously been copied across automatically e.g.
https://pubpeer.com/publications/0802939434D7E0ADBCC96C08DBCC7A

ETA: Actually, I see a recent one for me wasn't copied across.

I very much hope they won't get deleted. :arghh:
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Oh - that makes the loss of PMC much less annoying (assuming that they do not get deleted!)

PMC was useful for people coming upon comments when they were just looking for the paper though, so that's still a sad loss. I'll have to try to remember to routinely check PP.
 
Esther12 said:
Oh - that makes the loss of PMC much less annoying (assuming that they do not get deleted!)
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Unfortunately some of my comments were not copied across to PubMed Commons for some reason. I'm not sure why. I'm copying them now.

Esther12 said:
PMC was useful for people coming upon comments when they were just looking for the paper though, so that's still a sad loss. I'll have to try to remember to routinely check PP.
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If you download the extension for Firefox and Chrome, you get told that there are comments there.

PubPeer link 2.PNG
 
Tom Kindlon said:
In the earlier study, 39 (13%) participants met criteria for CFS at 6 months, 22 (7%) met criteria at 12 months, and 13 (4%) met criteria at 24 months. Exercise tolerance testing at 6 months found no difference in peak work capacity between subjects with CFS and recovered controls , but adolescents with CFS had a lower degree of fitness and exercised less efficiently than the controls [19].
Click to expand...

It is quite disappointing that the following finding from the same cohort was not mentioned:

ACTIVITY LEVELS BEFORE AND DURING MONONUCLEOSIS

We hypothesized that, in the year before mononucleosis onset, adolescents who later developed CFS would have been more physically active than controls who experience a normal recovery from infection. This hypothesis was not supported. Findings from t tests revealed that adolescents who later developed CFS did not differ significantly from controls in their physical activity levels at 12 months before mononucleosis onset (Table 3).

Huang Y, Katz BZ, Mears C, Kielhofner GW, Taylor R. Postinfectious fatigue in adolescents and physical activity. Arch Pediatr Adolesc Med. 2010 Sep;164(9):803-9. doi: 10.1001/archpediatrics.2010.144.
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Information on activity levels before illness seems particularly relevant. Though it would have the limitation that it was based on self-report data.
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Could the COFFI legacy be relevant for some aspects of the design and media hype of the Pariente study (Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al) ?

I am aware that COFFI had no cohort of people with Hep C treated with interferon alpha, but it seems to me they planned also to include prospective studies and data about cytokines and the like where possible? see https://internationalcoffi.files.wo...i-london-meeting-report-june-4th-5th-2015.pdf

eta: see p. 7ff
plus p.20:
THEORETICAL FRAMEWORK
The Theoretical Framework writing group (Moss-Morris, Crawley, Vollmer-Conna, Wensaas) reviewed the factors known, or hypothesized, to play a role in chronic fatigue following infection, namely:

Predisposing factors
–
age, sex, genetic variation, acquired vulnerability
(e.g. sensitisation, stress reactivity),
family adversity,
functional social support,
environment,
psychology (negative mood),
personality (negative perfectionism, introversion, neuroticism, somatosensory amplification)
.
Precipitating factors
–
severity of acuteinfection phase, other stressors.

Perpetuating factors
–
psychological resilience and behaviours
(illness behaviour, cognitions, coping skills, fear avoidance, activity, boom-bust, somatic focus, sleep, etc.),
psychoneuroimmunologicaland biological factors (microglia, TGF-ß, cortisol, POTS, etc.)
.
It was acknowledged that interactions between some of these factors were likely, and that the roles and relative contributions of the different factors have yet to be quantified, e.g. ‘other’ stressors as predisposing or precipitating factors.
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(p.20)

and: https://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1426086?journalCode=rftg20
 
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That video was gobsmacking to me. :banghead:
How can some people come across so unbelievably arrogant in such a short time. Or is it just the topic?

Do none of them realise that people like me never knew that glandular fever could have such long term issues. Or that a Campylobacter infection can be a serious illness and hence is an infection to be reported to local health authorities?

So how can my beliefs about these illnesses be affecting my abilities and functioning levels?

Or am I missing something? ( I must confess it’s not one of my better days)
 
MSEsperanza said:


Code: 
https://twitter.com/maxwhd/status/1285910603505311744

A slide from COFFI popped up in the video (obviously inserted afterwards to challenge the speaker's claims) and reminded me of this project.
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Uhhhh, what is suggested in the tweet just above sounds a lot like RecoveryNorge and what either of Fink or Knoop proposed to do, basically commit to some PR efforts to sell their BS to reluctant patients. Because consent is overrated.

Have unethical things become so normalized in this field that people openly discuss immoral things like it's no bother? Sure looks like it.
 
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