COFFI - The international collaborative on fatigue following infection

[Andy]

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

Their website indicates they are still somewhat active.

Update 25th Feb 2020

The publications page has been updated to include more papers by more authors. Check back occasionally for even more updates to the bibliography.

https://www.coffi-international.com/2020/02/publications-update/

Update 5th July 2020

The COVID epidemic has brought Chronic Fatigue into the forefront of post-infection news. Patients who have suffered from the new virus have reported symptoms of CFS/ME after they have recovered from the main infection. Newspapers such as The Washington Post, The Telegraph and New Scientist have become interested in the potential link, and have been providing coverage.

Researchers are also very interested in the experience of the post-COVID patients. A recent pre-paper (Qi et al, 2020) outlined findings indicating that stigmatisation was a major issue with survivors, especially women. Chronic fatigue was also noted in 53.6% of patients, indicating that CFS may be one of the main ongoing risks of the virus.

If you are experiencing chronic fatigue symptoms due to COVID-19 infection, your family doctor may be able to assist you. If you would like to read more information about CFS/ME, more information can be found on our Research page.

https://www.coffi-international.com/2020/07/covid-19-and-chronic-fatigue/

 

[Esther12]

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.

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.

 

[Snowdrop]

Just putting this here for reference:

The London meeting at which the COFFI collaborative was established was generously funded by the Sue Esterman Fund, a donor advised fund managed by the London Community Foundation whose website is Londoncf.org.uk. DIOS/SIOS were supported by funding from the Mason Foundation and the National Health and Medical Research Council of Australia (Project Grants 157092and 157062) and a Cooperative Research Agreement with the US Centers for Disease Control and Prevention (U50/CCU019851-01). The prospective study of CFS following IM was funded by the National Institutes of Health (AI 105781).

 

[MSEsperanza]

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.

For the present project, an advisory board of users will formally established, consisting of a) One representative from the “Youth council” at Ahus, consisting of adolescents suffering from chronic disorders; and b) One representative from the organization Recovery Norway, consisting of individuals having recovered from post-infectious chronic fatigue and similar conditions.

Posted on this thread because..

The present projectis hosted by the PAEDIA research group at Akershus University Hospital (Ahus)

The PAEDIA research group is headed by Prof. Vegard Wyller, who is also the PI of the present project, and Chair of the COFFI collaboration.

Prof. Wyller is the most published and cited PICF/CFS researcher in Norway.

National collaborative network and the COFFI collaborative

Over the last decade, Prof. Wyller has established a multidisciplinary national scientific collaborative network, covering a large area of expertise. Several co-publications exist. For the present project, the collaboration with Profs. B. Fevang and T.E. Mollnes at Oslo University hospital provides expertise in basic and applied immunology, the collaboration with Prof. H.L. Nilsen provides expertise in molecular immunology.

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.

Important measures to ensure integration between all collaborators encompass a) Shared responsibility for PhD supervision, b) Regular meetings (video link for international partners) to discuss scientific and strategic challenges; c) Hosting of seminars; and d) Face-to-face meetings.

Edit: Seems they have a new website: https://www.coffi-collaborative.com/participatingcohorts



@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

 

[MSEsperanza]

I would think of it very differently. Not everyone can just set themselves up as s 'citizen scientist' but many patients have a lot of scientific skills and experience some in the related subject and some in others. But that range of experience gives a perspective on the research. Having worked (and run) multi-disciplinary research projects there is something extra you get from considering a wide range of experiences and inputs.

One issue that scientists (and many other groups) can have in closed communities is group think. And this is another reason it is so important to get a range of views and inputs. It seems to me that the community around CBT/GET in ME is really quite closed to the extent that they don't address issues than many others raise.

In terms of data analysis there are many data sets that get released into the community to be looked at and examined. The stats and machine learning communities are always keen to see interesting data sets to test new techniques or look at the validity of the existing ones. Its a normal part of science these days.

The problems that are coming are due to very tight control on data along with changes to protocols and the use of inappropriate statistics. That allows people like the PACE authors to manipulate data and when limited data was released this became blatantly obvious. In fact it was obvious that something was wrong just reading the papers.

Maybe I have a different perspective because I work in a field (Computer security) where untrained people pop up and demonstrate vulnerabilities, attacks (and new defenses). They will often go for bug bounties or publish code so people can verify. But they do not get ignored because if they have found an attack then so may others so it gets looked at and fixed. It is a very different attitude where people are paid to find issues and no one thinks we can keep things out of the hands of others in the way some groups are trying to control data and hence the message.

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'.

 

[Adrian]

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?

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.

 

[Andy]

Latest output from COFFI, Editorial: A research agenda for post-COVID-19 fatigue, 2022, Wessely, Knoop et al

 

[Andy]

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

where this has been spotted

The Consumer Advisory Committee comprises of individuals who have first-hand experience with post-infective fatigue or chronic fatigue syndrome, either as sufferers themselves, or as next-of-kin.

The COFFI Consumer Advisory Committee include:

Professor Paul Garner, United Kingdom

Academic. Previously affected by the post-COVID-19 syndrome


Dr Marte Jürgensen, Norway

Medical practitioner. Previously affected by post-infective fatigue syndrome (Post Epstein-Barr virus).


Daniel Forrest, Australia

Psychologist (Provisional). Affected by post-infective fatigue syndrome (Post Epstein-Barr virus)

Amy Engkjer, United States

Non-profit founder. Previously affected by post COVID-19 syndrome

credit

 

[ME/CFS Skeptic]

Looks like the team has been expanded, with for example, the Lymeprospect study and COVID-19 studies.

 

[Hutan]

Long COVID and Post-infective Fatigue Syndrome: A Review - Wyller, Moss-Morris, Crawley, Knoop, Lloyd et al, 2022
A COFFI-fest.

 

[MSEsperanza]

Not sure whether already posted elsewhere that they have a Consumer Advisory Committee?

(Includes Prof. Paul Garner)

https://www.coffi-collaborative.com/consumer-advisory-committee


For activities of the committee see also:

https://www.coffi-collaborative.com/news

From Feb 2021: Workshop: COFFI Consumer Advisory committee priorities workshop: A consumer-researcher open dialogue

Link to Workshop Flyer

Also saved the PDF here:

 

[MSEsperanza]

Not sure whether already posted elsewhere that they have a Consumer Advisory Committee?

(Includes Prof. Paul Garner)

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.

 

[Trish]

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.

 

[Simone]

I note that all but one of the consumer advisory committee previously experienced post viral symptoms, so they are very far from representative.

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.

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.

It’s a huge concern.

 

[bobbler]

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

where this has been spotted



credit

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

 

[Hutan]

From Feb 2021: Workshop: COFFI Consumer Advisory committee priorities workshop: A consumer-researcher open dialogue

Link to Workshop Flyer

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.

 

[SNT Gatchaman]

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.

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

Consider the Asch protocol, a real experiment which has been replicated many times. Shown an image of three lines, one of which is obviously longer than the other two, most respondents will agree with planted subjects who have been instructed to say they are all the same length.

Make sure you read that right: people, by and large, will not trust their own perceptions when challenged by an apparent group consensus.

What’s worse is that the pressure to conform is experienced as a kind of severe pain by the brain. Imaging has demonstrated this.

Consensus, even an imaginary one created by sycophantic applause, shapes our world to an incredible degree. We are moved by consensus in almost everything that we do. What we wear, what we eat, how we spend our leisure time and even our deeply held values are all shaped by beliefs and attitudes expressed by those around us and those whom we choose to be around.

 

[Dx Revision Watch]

"COFFI Consumer-researcher Seminar series I. "Mind-brain-body interactions" (Prof Per Brodal); "persistent symptoms – conceptual understanding and experimental evidence." (Prof Omer van den Bergh. Fabulous stuff. Now available.#LongCovid #mecfs "

 

[Dx Revision Watch]

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

 

[Trish]

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.