COFFI - The international collaborative on fatigue following infection

I've just had a look up of Dr Marte Jurgenson, who seems to be a clinical psychiatrist. I found the following paper which is recent and on long-covid: A safe and effective micro-choice based rehabilitation for patients with long COVID: results from a quasi-experimental study (nature.com)

and found it fascinating for the unusual number of physical, objective tests it does: 30sec sit to stand, CPET, spirometry, all at baseline and 3months. There are measures of sick leave, and are plenty of questionnaire-based assessments too at these points, but these are also done at 7 days, just after the 3-day 'intensive rehab' which seems to be based on:
"strategies for handling symptoms: (1) To what extent did you allow the symptoms to decide today, and (2) to what extent did you make use of the principle of doing something else. An individual telephone consultation was conducted 10 days afer the intervention (Fig. 1)."

If there isn't already one then I think this paper might be worth a thread of its own, not least in case there is data that can somehow be fished from this beyond the 'headline claims' for these objective measures (vs the claims from the subjective) because it is intriguing whether 'mindset' actually changed anything functional.

I've a bit of a concern looking at the table that the 'n' [number of respondents] seems to change substantially enough from 'baseline' to '3 months' for each of these, whilst the authors thought it still appropriate to use the mean ie average results across all respondents [who must have completed this] .

So, for example when they suggest that there was a particular 'increase' for those with 'very severe fatigue' in, I am staring at figure 3 and the table before it trying to work out if that just means they lost the participants who had previously 'dragged down the average V02 peak' of said group and ergo made the mean 'not the same group of people'?:
"At baseline the participants had a mean V˙ O2peak kg−1 of 92 (17) % of predicted value (Table 3), 41% had V˙ O2peak<80% predicted. At 3-month this was reduced to 32%. V˙ O2peak kg−1 increased signifcantly (p=0.002), and the group with very severe fatigue at baseline had a signifcantly larger improvement compared to the others (Fig. 3)."

A separate point is that at 3months it's cleverly managing to perhaps sidestep the PEM - if the participants had the ME-type with PEM - from the 'testing itself', whilst maybe not being long enough for a relapse or really talk about it being 'long term'.

 

I wonder if Jürgensen might be the same person as the "Norway Medical practitioner. Previously affected by post-infective fatigue syndrome (Post Epstein-Barr virus)" in the COFFI-committee. She was also the deputy of Recovery Norge and is working at Helse i Hardanger, a place treating among other Long Covid with a method developed by psychology professor Gerd Kvale to treat OCD and anxiety.

Dr. Jürgensen recovered from ME by treatment from psychiatrist Bjarte Stubhaug who regards ME as a stress related illness and treats it with mindfulness and similar approaches. He published the paper "A 4-Day Mindfulness-Based Cognitive Behavioural Intervention Program for CFS/ME. An Open Study, With 1-Year Follow-Up" in 2018 (discussed in this thread). Gerd Kvale is among the co-authors.

 

Keith Geraghty has done a thread on it

 

(Contd)

 

I'm not sure but don't remember COFFI previously being 'Lightening Process' 'owned' ie it was fake CBT and false beliefs and mind-body nonsense in general/other formats -

and yet looking at the composition of this new 'consumer group' the sheer domination of % who are associated with things like recoverynorway and the various other version of these LIghtening Process-y things it seems that is.

WHich looks like a 'take-over' method, even for COFFI?

And calling it consumer along with certain other things makes me immediately think about the Cochrane 'pause' to 'insert' some apparently recovered individual onto their 'consumer group'

was this over the same time period this was happenning to COFFI?

are we likely to be talking about one of these individuals as the 'chosen one' for COchranes 'new individual'?

 

Yes it is

 

That last one is also clearly directly casting 'shade' with non-subtle inferences by saying 'persistent symptoms are associated more with the belief of having been infected than with a test result of SARS-cov2'.

Intrigued what he means - is it 'is the virus still there' a la Wessely's classic of 'the virus goes' (but I've not ever checked that is actually true) or is this comment on whether someone went and got a test when they first had covid, then can't produce one xmonths later when it becomes 'long'?

If the latter - it wouldn't really matter if it was covid or the nasty bug currently doing the rounds (for the accusation of 'just believes they were unwell that first time') given eg ME/CFS can also be caused by different viruses to covid - is he trying to suggest that this occurs after people 'imagine they got said bug for 2 weeks' and then that becomes something persistent months later, or that 'the persistent symptoms are real' and then they have a 'false memory' where they imagine they got covid? Useful to know what his messaging is saying (different to the general gist of what he is 'inferring')

or what it says about those who did have a test then get 'persistent symptoms'? particularly from the perspective of the suggested treatment they and people like Paul Garner - who did have the test, didn't he, so in that case 'belief he had covid in the first place' is due to said test?

This making things up reality distortion is really hard to follow because there is no logic?

 

Keith Geraghty writes on Twitter: "So the next speaker has some interesting ref's to studies; he talks of stimulus, bias or placebo/nocebo & affect (ok); but then sets up premise LongCovid has no assoc. with serology (without explaining the complexity of that link) - so his model = symptoms with no link to biology"



If you're quoting Matta et al (Nov 2021) in Dec 2023, then you have excluded your arguments from serious consideration on the basis of being scientifically uninformed. Two years later, the laboratory can indeed now confirm those historical Covid infections, that were PCR-neg or sero-neg.

 

Paul Garner comes across as a Louise Hay of the 21st century. Way back in the 1980s Louise told early AIDS sufferers they could cure themselves. Hay's ideology was that people created their own diseases, and could cure themselves by thought and by self love. Hay's ideology was not benign, it was full of blame, held out hope, but induced the guilt of failure.



'How Louise Hay’s Spiritual Pseudoscience Harmed a Generation of Gay Men'

'... The reality of, say, having acne because of hormones, or getting cancer because of environmental or hereditary reasons, did not interest Hay. There was no place for viruses.

And there was no place for the virus that caused AIDS. Which is ironic, because it was the advent of HIV that thrust Hay into prominence in the mid-1980s. Her exploding popularity was fueled by the explosion of a disease of the immune system that had no known cause, for years had no treatment, and still has no cure.

It’s hard now to imagine the extent of the fear, paranoia, and ostracism in the early years of the epidemic. People with AIDS were absolute pariahs. To health professionals, they were hopeless cases, to be offered palliative care and denied hope. To a scared society, they were disease vectors, to be condemned for their disease and, if they were gay, for their sexuality. For their families, they were often embarrassments, to be secreted away when they returned home to die, or else cast into the wilderness, thanks to what writer and activist Sarah Schulman has defined as “familial homophobia.” ......


...... Enter Louise Hay. As Schulman has pointed out, certain figures of the early AIDS era like Louise Hay slipped into the role that many mothers of children with AIDS had shirked. When Hay emerged, there was little love and care, maternal or otherwise, to be found for people affected by AIDS—especially from any institutional or spiritual authority .....


.....To these desperate people Louise Hay offered open if judgmental arms; emotional group encounters known as Hayrides; teddy bears to cuddle; mirrors in which you could affirm your worth no matter how bad your Kaposi’s sarcoma lesions; a simulacrum of science; and spiritually nutty notions. Certainly some people found in Hay the support, recognition, and nurture that they couldn’t find elsewhere.


But others were wounded by Hay’s subversively pernicious judgment, rooted as it was in a tragically fatuous view of the body that made the medieval science of humours look like third-year Harvard Medical School. The last thing people with AIDS needed to hear was that they had caused their own illness.


Some of Hay’s disciples, believing they had failed to follow her dicta well enough, died ashamed, disempowered, and betrayed. Many AIDS survivors and caregivers have testified to the tragic personal cost of Hay’s philosophy, and what some have called her brutal dismissal of actual people with AIDS, including the poor and people of color, as well as her willingness to profit personally through the pain of the sick, the psychically unsettled, and the terminally ill.

Hay faded out of prominence among people with AIDS—as people with AIDS and health care activists built their own systems of support, care, spirituality, and political action. The most vital of those communities was centered around organizations like ACT UP, the AIDS Coalition to Unleash Power, which used direct action to seek an end the AIDS crisis—challenging the government, demanding new drug protocols, protesting the Catholic Church and religious fundamentalists for their organized hatefulness, and generally bringing people together for a cause that was life-or-death to each of them but that transcended the personal to become a common urge toward justice'


https://slate.com/human-interest/20...ce-harmed-the-aids-generation-of-gay-men.html

 

Ironic, that what this shifted to is... the opposite. Of course they were given palliative care because AIDS leads to recognized health problems, whereas complete loss of function and disability aren't recognized health problems, and so we are offered hope without care, instead of it. Lies over lives.

Welp, that's one thing that hasn't changed. In fact this very nonsense is taught at every medical school in the world as if it's fact, and not about AIDS, a relatively low incidence disease, but about anything and everything medicine can't yet explain, which is the majority of health problems. Challenging this pseudoscience is met with overt hostility and disdain. So in many ways, things got significantly worse since then.

 

I fully appreciate that the most important thing with all ME/CFS research is to benefit the health of patients, but I cannot avoid also looking forward to the time the pseudo-science quacks have to choke on their own words one day, once the underlying physiological cause is identified.

 

It has been announced today that Guri Rørtveit, who among other is on the steering committee to COFFI, will be the new director of the Norwegian Institute for Public Health.

Her medical field is GP, and she has supported the BPS side of the ME debate and Long Covid debate.

 

Moved posts

"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 Scientific Advisory Board consists of distinguished researchers in the field who are not otherwise affiliated with the COFFI collaborative or single COFFI cohorts.

COFFI has a policy for the disclosure of conflicts of interest of all COFFI committee members using a standard template. Conflict of Interest (COI) statements from each committee member are stored securely in the COFFI records, but can be released upon reasonable request to individuals with appropriate consideration of member confidentiality." 12 July 2023 one day after the 'Anomalies' paper.

The Collaborative on Fatigue Following Infection (COFFI) - Governance (coffi-collaborative.com)

 

13 December 2023

Consumer rights

Live seminar: Mind-body, neural pathway disorders as a way to explain chronic fatigue syndromes. (coffi-collaborative.com)

"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.


On top of this, there is also a diverse scientific literature on how the brain and body interact with whole journals on topics such as psychoneuroimmunology, psychoneuroendocrinology; and studies in mainstream basic science journals, brain science journals, and psychology. If indeed chronic fatigue syndromes are related to complex relationships between the brain, the endocrine, nervous, muscular, gut and other body systems, then understanding this biology, and the way thoughts and the mind may interact with these systems, is important for everyone. For research groups, this is obviously critical in investigating fatigue, and there will be high levels of knowledge in such a group, so being able to develop a narrative that is a bit more rigorous than the self-help books but also accessible to the informed consumer would be a fantastic long-term goal. For consumers, we know there is literature that suggests simply having an explanation of symptoms sometimes helps patients, so this makes getting accurate narratives developed important."