COFFI - The international collaborative on fatigue following infection

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.

 

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.

 

Paul Garner "The Faith Healer"?

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

 

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!

 

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".

 

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.

 

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.

 

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

 

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.

 

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?

 

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' ?

 

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.

 

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.