COFFI - The international collaborative on fatigue following infection

[Trish]

Part 1: General concepts on mind-brain-body interactions

Speaker: Per Alf Brodal

Per Brodal is MD and professor emeritus in neurobiology at the University of Oslo, Norway. A main interest through his career has been to bridge the gap between basic neuroscience and clinical medicine. His Textbook "The Central Nervous System" (Oxford University Press), written with this aim, has become a classic in its field. During recent years he has been engaged in trying to understand "medically unexplained conditions" - such as chronic pain, fibromyalgia and chronic fatigue syndrome - in the light of recent neuroscientific findings.

Part 2: Persistent symptoms – conceptual understanding and experimental evidence

Speaker: Omer Van den Bergh

Omer Van den Bergh is emeritus professor of Health Psychology at the University of Leuven, Belgium. He currently has a research affiliation with the Institute of Cognitive Sciences and Technologies (ISTC, Rome) and is a Mercator Fellow at the DFG (German National Research Foundation). His expertise pertains to the relationship between health and behavior. Specific keywords are symptom perception and (respiratory) psychophysiology in response to stress and aversive somatic experiences. He is involved in several international research programs as an advisor.

The second seminar is introduced by Paul Garner.

 

[Sean]

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.

That would be a novel approach from them.

But the cynic in me says that they are just trying to rebrand the same old shit as an exciting new approach, never before tried, and clearly in need of lots of funds and influence.

 

[bobbler]

That would be a novel approach from them.

But the cynic in me says that they are just trying to rebrand the same old shit as an exciting new approach, never before tried, and clearly in need of lots of funds and influence.

Indeed, I think what he is saying is that as long as there is no null hypothesis that the mind isn't causing it, or at least 'part of it' they'll have the banana republic discussion about which seem the most valid and likely.

the thing the public should be being having to be made aware of, given for some reason the psychosomatic literature doesn't have to acknowledge the existence of scientific findings hence being able to claim 'no biomedical findings' type nonsense rather than provide a literature review including e.g. the Workwell findings for their 'encourage people to pace up/GET and ignore their symptoms' therapies, is well... that it is just what I've said.

Imagine if you had an area called paraphysics, where they could discuss anything that only involved the mind being behind the physical phenomenon and thereby excluded papers in physics publications that e.g. proved gravity. And were then able to say 'opening up a sense of inquiry and dialogue' to discuss all paraphysics explanation of why the apple fell on Newton's head.

 

[Sean]

there is no null hypothesis that the mind isn't causing it,

Exactly. They deal with that rather critical possibility by simply not allowing it into the discussion, by rejecting both adequate controls and falsifiability.

 

[Trish]

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

It's hard to know why some of these listed are on the scientific advisory committee, as information about them makes no mention of COFFI or any interest in 'fatigue syndromes'.

For example:

https://www.bristol.ac.uk/media/exp...ails?personKey=QslD3tBone8OeEZe7CxyVYwyZJPvna

Professor Alastair Hay
Job title Professor of Primary Care
Department Bristol Medical School (PHS)
Areas of expertise
I have two broad research interests relating to primary care:

1)The diagnosis, prognosis and treatment of common problems presenting to primary care, for example acute cough and fever in children.

2) The appropriate use of antibiotics in primary care and the relationship between primary care antibiotics and the development of antimicrobial resistance in the community.

_____________________

PhillipKPeterson MD
Infectious Disease • Minneapolis, MN
Professor, Medicine, University of Minnesota Medical School
co-author of
Microbes: The Life-Changing Story of Germs: The Life-Changing Story of Germs and Bad Bacteria Hardcover – 8 Aug. 2020
Does biomedical research on infectious diseases, and some on drugs of abuse.
https://www.researchgate.net/scientific-contributions/Phillip-K-Peterson-39108504
________________

This one does mention pain and fatigue:
https://medicine.umich.edu/dept/pain-research/daniel-clauw-md
Daniel Clauw, M.D.

Professor, Anesthesiology
Professor, Internal Medicine (Rheumatology)
Professor, Psychiatry
Biography
Daniel Clauw is a Professor of Anesthesiology. Medicine (Rheumatology) and Psychiatry at the University of Michigan. He serves as Director of the Chronic Pain and Fatigue Research Center. Until January 2009 he also served as the first Associate Dean for Clinical and Translational Research within the University of Michigan Medical School, and PI of the UM Clinical and Translational Sciences Award (CTSA).

 

[Trish]

Screenshot from the first speaker
https://www.coffi-collaborative.com...as-a-way-to-explain-chronic-fatigue-syndromes

I didn't watch much of it. He's a retired neurobiologist speculating about what might cause chronic fatigue.

The woman who introduced him is the co-chair of the patient group of COFFI. Her story is that she had long covid for about 4 months, thought she was stuck with it for life, then read some recovery stories online and decided to follow their path. Very excitable and hand wavey.
The other co-chair is Paul Garner, who similarly attributes his recovery to this stuff.
I guess they met online and PG suggested she join him on COFFI to push their views.

 

[Jonathan Edwards]

Screenshot from the first speaker

This is exactly the way the 'molecular mimicry' theory of autoimmunity works (or doesn't). The joker in the pack theory.

The theory says:

1. The body system works like this.
2. In disease the system does not work like this.
3. That explains the disease.

Which of course it doesn't because you need to have a theory of why it should not work the way it works.

And of course if the speaker knew anything about control systems he would realise that what he means is that the alarm set point is reset to a lower value!
You cannot get more muddled than this.

 

[Trish]

The second speaker introduced by Paul Garner is a professor of health psychology.

Again, I skipped through it. He shows some data and experiments, and concludes that in acute illnesses what is happening in the body leads to symptoms, but in chronic conditions like ME/CFS, FM, IBS etc, the link is looser, and most symptoms are caused by altered perceptions.

 

[FMMM1]

Paul Garner, who similarly attributes his recovery to this stuff

Paul Garner "The Faith Healer"?

https://en.wikipedia.org/wiki/Faith_Healer

 

[FMMM1]

[psychologists] in chronic conditions like ME/CFS, FM, IBS etc, the link is looser, and most symptoms are caused by altered perceptions.

Well, these psychologists need to get their game together then i.e. if the illness is psychological and their "treatment" works then most people would be able to return to a normal life!
I think @Hutan has highlighted that given these are unblinded trials, with subjective outcomes, the reported "improvement" is remarkably small - I agree. After all that coaching, you'd expect better scores in the self reported questionnaires!

 

[rvallee]

Mind-brain-body interactions

Not dualists. Because they're trialists. And probably some more.

But, hey, it can't be wrong, this stuff is found in self-help books! And in medical textbooks! And somehow the content is the exact same! How could anything be wrong when it has solid evidence like "some people are saying" and "you can't prove that it's wrong", which is basically kindergarten level of "you have cooties and are a poopy face because you can't prove you're not".

 

[Kalliope]

Screenshot from the first speaker
https://www.coffi-collaborative.com...as-a-way-to-explain-chronic-fatigue-syndromes



I didn't watch much of it. He's a retired neurobiologist speculating about what might cause chronic fatigue.

The woman who introduced him is the co-chair of the patient group of COFFI. Her story is that she had long covid for about 4 months, thought she was stuck with it for life, then read some recovery stories online and decided to follow their path. Very excitable and hand wavey.
The other co-chair is Paul Garner, who similarly attributes his recovery to this stuff.
I guess they met online and PG suggested she join him on COFFI to push their views.

Just adding that Per Brodal is seen as an esteemed brain expert here in Norway and is often invited to popular scientific programmes.

He wrote a chapter in Lightning Process coach Live Landmark's book from 2016. The book was about her journey from patient to recovered and if I remember correctly Brodal wrote about how methods as LP in his opinion can be plausible.

 

[RaviHVJ]

Between COFFI and the Oslo Consortium, the BPS crowd seems to have really upped its organisational efforts over the past few months. They must realise that their reputations are in huge danger - we're now not only in the post-PACE trial world, but also at a point where post-viral biomedical research is receiving some proper funding for the first time in history. The latter above all is the death knell for the BPS perspective, which they must know and are desperately trying to respond to.

 

[SNT Gatchaman]

And of course if the speaker knew anything about control systems he would realise that what he means is that the alarm set point is reset to a lower value!
You cannot get more muddled than this.

He shows some data and experiments, and concludes that in acute illnesses what is happening in the body leads to symptoms, but in chronic conditions like ME/CFS, FM, IBS etc, the link is looser, and most symptoms are caused by altered perceptions.

Meanwhile in actual science, Transcriptional memory is conferred by combined heritable maintenance and local removal of selective chromatin modifications (2023, Preprint: BioRxiv) —

Cells exist in a dynamic environment, where they respond to a multitude of stimuli by rewiring their gene expression programmes. While acute transcriptional activation by external signals is well understood, the longer-term cellular consequences of such signals are poorly defined. Cells can maintain a memory of past stimulation that can be inherited for multiple cell generations.

However, transient gene activation can also be memorized, known as long-term transcriptional memory. Such memory of gene activation is relevant as it may alter the cellular response to future reexposure to activating signals.

Our results are consistent with a model where the GBP memory loci selectively retain an epigenetically inherited chromatin signature after initial IFNγ stimulation, which in turn accelerates future expression hyperactivation upon IFNγ re-exposure.

 

[Hoopoe]

I improved significantly while hating the lightning process and thinking all the mind-body stuff is nonsense and not believing that I could improve so much. Therefore the conclusion, in my case, must be that this "negativity" has powerful healing effects.

 

[Hutan]

They must realise that their reputations are in huge danger - we're now not only in the post-PACE trial world, but also at a point where post-viral biomedical research is receiving some proper funding for the first time in history. The latter above all is the death knell for the BPS perspective, which they must know and are desperately trying to respond to.

And this is my (well, one of my) concerns with the Cochrane Exercise Review. The BPS proponents who seem to have some control over the outcome may be willing to let go of a slice of MUS, that is 'people who manage to get a diagnosis of ME/CFS', while continuing to assert that their therapies work for everyone else (despite a lack of credible evidence that this is so). And then continue on making it ever harder for anyone to actually get an ME/CFS diagnosis.

I remain concerned (due to a lack of evidence otherwise) that some of the people who are part of the Cochrane Exercise Review process and who do actually understand how GET can harm, might be willing to allow an outcome where it is conceded that GET may not work for some people with ME/CFS, but that it can work for others - perhaps those with Fukuda CFS. That is, the focus of the new review may be on the selection criteria, when there is no evidence that GET works for any sort of CFS or ME/CFS.

 

[bobbler]

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.

Was just looking up what this consumer group is and was interested by the following as a side-note:

"Project Working Groups (PWG) are ad hoc groups arranged around one research aim that may be investigated within the COFFI collaborative. A PWG should always include one PI or lead co-investigator. Additional group members are freely assembled as needed. The group should submit a research idea with a concept sheet to the Steering Committee for review and approval before the group may proceed with data analyses based on the common COFFI database and/or biobank. The PWGs are responsible for drafting scientific abstracts and papers based on approved concepts sheets, and publication and dissemination of results."


Which indicates to me that COFFI has its own database and biobank - I'd be intrigued as to what these are and whether they limit/affect where data is gathered from?

 

[bobbler]

I've now found the consumer advisory committee - which in @Trish 's post is made to sound like a patient representative group

On COFFI's Governance page it is described as:
"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 page for the committee is: The Collaborative on Fatigue Following Infection (COFFI) - Governance (coffi-collaborative.com)

I don't know if I can cut and paste the page with the people on it?

As a summary it is headed up by Paul Garner "Academic. Previously affected by the post-COVID-19 syndrome"

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

One is "Australia Psychologist. Affected by post-infective fatigue syndrome (Post Epstein-Barr virus)"

One is "United States. Non-profit founder. Previously affected by post COVID-19 syndrome"


There are then 3 listed without professional specifications, which might mean they are 'just' 'consumers'?

Of these 3, two are noted as having "Previously affected by the post-COVID-19 syndrome" ( like two of the four above professionals state for their descriptors), one of whom is listed as UNited Kingdom, the other no location.

And then there is one who is noted as "United Kingdom. Diagnosed with ME/CFS"


I've no idea whether it is a typo, or relevant that they seem to call some of these 'the post-COVID-19 syndrome' ?

 

[bobbler]

I've now found the consumer advisory committee - which in @Trish 's post is made to sound like a patient representative group

On COFFI's Governance page it is described as:
"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 page for the committee is: The Collaborative on Fatigue Following Infection (COFFI) - Governance (coffi-collaborative.com)

I don't know if I can cut and paste the page with the people on it?

As a summary it is headed up by Paul Garner "Academic. Previously affected by the post-COVID-19 syndrome"

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

One is "Australia Psychologist. Affected by post-infective fatigue syndrome (Post Epstein-Barr virus)"

One is "United States. Non-profit founder. Previously affected by post COVID-19 syndrome"


There are then 3 listed without professional specifications, which might mean they are 'just' 'consumers'?

Of these 3, two are noted as having "Previously affected by the post-COVID-19 syndrome" ( like three of the four above professionals state for their descriptors), one of whom is listed as UNited Kingdom, the other no location.

And then there is one who is noted as "United Kingdom. Diagnosed with ME/CFS"


I've no idea whether it is a typo, or relevant that they seem to call some of these 'the post-COVID-19 syndrome' ?

I do note Nice's point in the 2021 ME/CFS guidelines about follow-up time from treatment regarding claims of 'recovery' or in our terms 'improvement or not', that I fully agreed with needing to be years and not a few months/weeks after CBT'ing people to talk away false beliefs of 'talking about their symptoms' etc. And that Covid came onto the scene in March 2020.

Assuming to say you really had long covid you'd perhaps say you had it for a year, although I know some say it after 6months - so a big question there to firm up noting a recent post by @Jonathan Edwards which I think was valid of there being 3 types.

But if 1yr and you caught it March 2020 then these people with post-covid-19, then even if website was updated yesterday that would be 2yrs 8months since March 2021.

I don't know what the note at the bottom of this page "©2020 by The Collaborative on Fatigue Following Infection (COFFI)" fully means, because I normally look there for when a webpage was last updated.


Of course it sounds like two of these had Epstein-Barr (one saying presiouly affected the other affected), so maybe aren't covid-related and one is 'diagnosed with ME/CFS' but doesn't note anything more re: covid, Epstein-Barr etc.

 

[bobbler]

I've now found the consumer advisory committee - which in @Trish 's post is made to sound like a patient representative group

On COFFI's Governance page it is described as:
"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 page for the committee is: The Collaborative on Fatigue Following Infection (COFFI) - Governance (coffi-collaborative.com)

I don't know if I can cut and paste the page with the people on it?

As a summary it is headed up by Paul Garner "Academic. Previously affected by the post-COVID-19 syndrome"

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

One is "Australia Psychologist. Affected by post-infective fatigue syndrome (Post Epstein-Barr virus)"

One is "United States. Non-profit founder. Previously affected by post COVID-19 syndrome"


There are then 3 listed without professional specifications, which might mean they are 'just' 'consumers'?

Of these 3, two are noted as having "Previously affected by the post-COVID-19 syndrome" ( like three of the four above professionals state for their descriptors), one of whom is listed as UNited Kingdom, the other no location.

And then there is one who is noted as "United Kingdom. Diagnosed with ME/CFS"


I've no idea whether it is a typo, or relevant that they seem to call some of these 'the post-COVID-19 syndrome' ?

OK so according to the recoverynorway blog for one of these who is previously affected by post-covid-19: Recovery | “I had long Covid. I have fully recovered” (recoverynorway.org)

They got COvid in DEc 2020, recovered after a week and went back to work in Jan then in early feb felt floored and rested then in march started pacing themselves up (but calls this spoons theory and pacing) and is now fully recovered. It sounds like she was cycling 10 miles and running a half-marathon within a year. There is also a blog with an entry where she has 'rewritten' her long-covid journey.

I'm not sure how much of a coincidence the conflation of terms relied on by pwme such as spoons theory into mis-terms that mean the opposite actually are as there are so many of them. Particularly given they've titled the section 'pacing and spoons theory' then mis-described them. Using the PACE trial formatting as if that is what pacing is.

"Once I started to get better, I was advised by many experts that the only way to get back to full health was to PACE. I was introduced to something called the Spoon theory. This meant building up activity so slowly that you walked, for example, an extra minute a week and only every other day to make sure you didn’t react to the increased effort and not on days where you had increased other activity such as work. I was improving, but it was painstakingly slow and I was frightened."

I also note the claims of 'I had the same symptoms as ME' - is there any other illness that you would get away with that for?

"By mid-February ........I was advised I had Long Covid, and it was the same symptoms as ME/Post viral fatigue/CFS. Main symptoms –crippling fatigue, covid toes, covid strangle throat, burning back, anxiety, tight ribs, inability to regulate my temperature and dysfunctional breathing."

Of course the real 'game-changer' is stated as going on the Lightening Process course in May. And a blog post calls it mind-body syndrome etc.