Open Sweden: The role of low-grade inflammation [...] in ME/CFS, Andreasson et al - recruiting

The role of low-grade inflammation for the progress of disease in patients with myalgic encephalomyelitis/chronic fatigue syndrome ME/CFS

Anna Andreasson, Martin Jonsjö, Linda Holmström.

Original title in Swedish (as stated in the ethical approval application): Betydelsen av låggradig inflammation för symtoms förekomst, grad och utveckling i Myalgisk Encefalomyelit/Kroniskt trötthetssyndrom.

https://www.stressforskning.su.se/om-oss/press-nyheter/nyheter/deltagare-till-forskningsstudie-sökes-1.434261

 

From the ethical approval application:

 

More from the ethical approval application:









(Edited to remove duplicates, sorry!)

 

Other S4ME threads about Martin Jonsjö's research:

Sickness & behavior in ME/CFS (Chronic Fatigue Syndrome) - Jonsjö, Martin 2019 (Thesis)

Discussing acceptance and commitment therapy in ME/CFS.

Sweden: ACT for ME/CFS - an Open Case Trial

The prevalence and impact of psychoneuroimmunological factors in ME/CFS: Effects and mechanisms of ACT (2019) Olsson et al.

About the Stress Research Institute in English:

https://www.stressforskning.su.se/english/

Here's what they say about psychoneuroimmunology:

https://www.stressforskning.su.se/english/research/psychoneuroimmunology

About Anna Andreasson:

https://www.su.se/profiles/anan6088-1.188195

 

Sickness behavior.

 

I'm very dubious of this. The list of other studies listed in comment #4 does not indicate even basic understanding of ME and the reliance on psychometric questionnaire is entirely superfluous, suggests typical FND crap trying to present cherry-picked correlations as significant, because science 101 is overrated, I guess.

There is some language that seem relevant at first glance but then that's basically been the "innovation" at the center of FND: psychosomatic "medicine" that pretends it's not using the language of science but incompetently and only to "prove" predetermined conclusions. Probably best to pass and recommend against participation. Enough coddling of pointless fishing expeditions.

I'd much rather have actual competent people who don't bother wasting parts of a study on nonsense. Irrelevant questionnaires have already proven to be utterly useless and only add a bunch of noise. It's been done to death. Enough of this. It's not yet science if you can't measure things reliably. Devise competent measurements or go home.

 

From the same authors

https://www.sciencedirect.com/science/article/abs/pii/S0306453019313198

The role of low-grade inflammation in ME/CFS (Chronic Fatigue Syndrome) - associations with symptoms

 

I think the intention is to see whether any specific cytokines are correlated with scores of their shiny new "Sickness Behaviour" questionnaire.

Personally, I'm a bit bored of cytokine studies, as cytokines haven't been found to be useful biomarkers for any illness, except the cytokine release syndrome (sometimes known as cytokine storm). Cytokines aren't really meant to spill over into the blood (where they are mostly useless), and so much cytokine activity during infections for example, goes undetected.
Aside from the longitudinal aspect, there is little innovation. Perhaps we'll see a replication of increased TGF-Beta over several time periods though.

 

I agree. I believe this is part of their efforts to try and subgroup patients by combining psychological and biological data; an intent they have previously stated in, for example, research plans submitted to the Ethical Review Authority.

In their ACT research plan (2015) it says that the aim of evaluating symptoms in relation to psychological, neuroimmunological and endocrinological factors is to define what patient groups wiil have the best effect of ACT, and that the goal is to improve mental health, physical function (including the ability to work) and quality of life for adults with CFS.

 

Their web page was apparently updated in March, a Q&A has been added. Here's one of the answers:

https://www.stressforskning.su.se/om-oss/press-nyheter/nyheter/deltagare-till-forskningsstudie-sökes-1.434261#Frågor och svar

There's still no info about why a psychological department is doing a study like this (heavily framed as studying "the physiological causes of ME/CFS"). In the Q&A there's this wee bit at the end:

and this:

I can't help wondering what treatments the Stress Research Institute have in mind... Their own version of "ACT" (gradually increase activity, managing irrational fears etc) or maybe CBT? I really wish they were more transparent about the models they are using...

 

The webpage was updated in May 2021.

The name of the study has apparently been changed to "the role of low-grade inflammation in long-term complicated fatigue".

Post-COVID and utmattningssyndrom (burnout, work/stress related exhaustion syndrome; has a separate diagnostic code in Sweden, is not the same as CFS) have been added to the inclusion criteria.

They are still looking for participants. (Not a recommendation.)

 

Wow, so now they just lump ME/CFS, post-covid and burn-out together?
What looked really bad to begin with now looks even worse.

Or is it perhaps better for us that the studie refers to 'long-term complicated fatigue' instead of ME? (although ME is seemingly (mis)placed under that very MUS-sounding umbrella term.

 

"Stockholm University
Psychology Department

Andreasson's research lab"

https://www.psychology.su.se/forskn...sykologi/forskning/andreassons-forskningslabb

"Funding
[...]

• Skandia
• Folksam"

= insurance companies.

 

The researchers submitted an application regarding a number of changes to the study protocol in June 2021. It was approved by the Ethical Review Authority on 27 July 2021.

The following info has been copied from the application and auto-translated.

Some of the amendments in brief:

• Addition of up to 150 individuals responding to questionnaires only
• Asking participants to take part in an experiment
• Advertising for study participants also via patient organisations and social media
• Validate a questionnaire for acute fatigue
• Adding a questionnaire on prevalence of neuropsychiatric symptoms
• Broaden inclusion to patients with long-term complex fatigue [ME/CFS, burnout syndrome, post-covid-19]
  
• Add a healthy control group
• Add a comparison group of patients with rheumatic disease
• Add a comparison group of patients with IBS
  
• Add questionnaires
• Add question if participant has had Covid-19

Their hypothesis is still the same:

"Our underlying hypothesis is that there are many common biopsychosocial vulnerability and perpetuating factors for fatigue, regardless of the main diagnosis of the patients. We also believe that there are subgroups that differ in terms of these factors and that are also likely to overlap between the different diagnosis groups."

Under the heading "psychological factors", the following examples are given:

"Mental illness (anxiety and depression), prolonged stress prior to onset, symptoms consistent with underlying undiagnosed neuropsychiatric problems, perfectionism, psychological flexibility and ability to emotionally regulate."

Project summary, updated version

 

Agreed also. We could add Castleman's disease but in a way that only proves the point more.

 

Pretty chilling that insurance companies are funding research into psychosocial "perpetuating factors" and consequences for work capacity and sick leave...

 

"In total, participants are asked to answer a maximum of 200 questions in one session."

 

I'd like to see a statement of how that hypothesis meets a test of falsifiability.