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.

 

If it isn't immediately obvious, they're trying to include all of the post-infection cohort studies that they can. This includes studies lead by researchers who aren't popular on this forum...

 

Hah, Wazzu. I think that's as far from civilization as someone can get without leaving the state, and is a huge step down from working at UW Though it is unfortunate that she's found a new vulnerable population to inflict herself upon.

 

Sure. I am just making the point Trish is making that this is probably a plan for a collaboration that will probably now never fly.

 

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.

 

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.

 

You can be happy that at least two (Jeannine L.A. Hautvast & Chantal P Bleeker-Rovers) of them are Dutch

If I Google them I often see them connected to Nijmegen - Radboud:
https://www.researchgate.net/profile/Chantal_Bleeker-Rovers

https://www.researchgate.net/scientific-contributions/55247350_Jeannine_L_A_Hautvast

 

https://totoneimbehl.wordpress.com/norske-forskningsstudier-pa-me/pi-giardiasis-og-me/

 

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.

 

I just posted this, for what it is worth.
https://twitter.com/user/status/964995787909419008


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

 

Thanks for all your work Tom.

You going to be reposting your 100+ PMC comments? *shudder*

 

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.

 

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.

 

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.

If you download the extension for Firefox and Chrome, you get told that there are comments there.

 

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:

(p.20)

and: https://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1426086?journalCode=rftg20

 

https://twitter.com/user/status/1285910603505311744

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.

 

That video was gobsmacking to me.
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)

 

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.

 

Speeking of research waste, did anyone follow up what happened to this collaborative?