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

[Sly Saint]

The Andreasson lab

In this lab, the focus is primarily on mechanisms in diseases with a large impact on quality of life where knowledge about disease mechanisms are lacking, such as disorders of gut-brain interaction (e.g. irritable bowel syndrome, IBS), fatigue (ME/CFS, exhaustion disorder and post-covid syndrome) and chronic pain.

On a broader level we also want to increase knowledge regarding the interplay between disease mechanisms, disease symptoms, psychological factors and daily functioning as well as quality of life.

Our main research projects include:

• Inflammatory and nutritional markers and development of symptoms in persistent complicated fatigue – a longitudinal study
• Inflammatory markers and chronic pain in children
• The aetiology of IBS – a population based colonoscopy study

Our projects are supported by Swedish Research Council, Skandia and Folksam research funds, Ruth and Richard Julin’s fund and Nanna Svartz fund.

Member of AGIRA (Australian Gastrointestinal Research Alliance).

Group members, presentation
Martin Jonsjö, Lic. Psychologist, PhD

Martin’s main research interests include behavior medicine treatment development for pediatric chronic pain, and the interactions between behavioral learning processes, the brain and the immune system in such conditions. Martin is particularly interested in placebo and nocebo mechanisms from a contextual behavioral learning theory perspective, and how these mechanisms can be better understood, in order to for example aid the development of more effective treatments.

Mike Kemani, Lic. Psychologist, PhD, Head of Behavioral Medicine Section, Medical Unit, Medical Psychology, Karolinska University Hospital

My main research interests include behavioral medicine treatment development and evaluation, from a contextual behavioral science perspective, for patients with psychological suffering (behavioral, cognitive and emotional) in regard to their somatic disease. The primary foci being, refining our understanding of language processes in these interventions, as well as of the interaction between biological markers, symptoms and psychological factors, in regard to daily functioning and quality of life outcomes following aforementioned treatments (i.e. processes of change).

Therese Liljebo, Reg. Dietitian, Gastromottagningen City; PhD Student, Department of Medicine, Karolinska Institutet, Solna

Therese´s PhD project investigates nutrition treatment with fermentable oligo-di- monosaccharides and polyols (FODMAPs) for adult patients with Irritable bowel syndrome (IBS), and how the FODMAP diet affects gastrointestinal symptoms and quality of life including fatigue. The project also investigated the correlation between diet intake, nutritional status and symptom burden in Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the comorbidity between IBS and ME/CFS.

https://www.su.se/english/research/...esearch-group-members,research-group-projects

Fatigue cohort: A longitudinal study of persistent complicated fatigue

Fatigue is anecdotally one of the most commonly reported and disabling symptoms after COVID-19 and is the cardinal symptom in chronic fatigue syndrome (ME/CFS) and exhaustion disorder (ED)

Our hypothesis is that there are shared biopsychosocial vulnerability factors to develop and maintain fatigue, irrespective of the main diagnosis. We also hypothesise that there are subgroups that differ in terms of these factors.

This study is based on an ongoing cohort on fatigue in Stockholm (ClinicalTrials.gov NCT04955587) and a sister study starting up in Linköping during 2021.

Patients with post-COVID fatigue, ME/CFS and ED are being followed for 24 months with blood samples for peripheral biological markers and questionnaire reports at baseline and month 1, 2, 4, 6, 12, 18 and 24. In addition, a urine metabolic test and a 3-day diet registration are performed at one time point.

The long-term goals with the project include improved health-care and consequently improved functioning, health and quality of life for affected patients.

https://www.su.se/english/research/...?open-collapse-boxes=research-project-members

 

[mango]

This study apparently got 3 of the 50 million SEK Vetenskapsrådet/The Swedish Research Council handed out for postcovid research in 2021.

(VR received 56 applications in total. 14 were approved.)

https://www.vr.se/english/just-now/...sek-to-research-into-post-covid-syndrome.html

50 million SEK to research into post-COVID syndrome

The Swedish Research Council is allocating 50 million SEK to 14 research projects into post-COVID syndrome. The research shall contribute to developing knowledge within health and medical care, and improving diagnosis and therapy alternatives for patients with long-term symptoms following COVID-19.

The researchers now awarded grants are active at the University of Gothenburg, Karolinska Institutet, Linköping University, Stockholm University and Umeå University. Together, their research covers many different types of symptoms and organs.

Examples of questions that the projects seek to answer are whether post-COVID syndrome is caused by an auto-immune reaction, or by residual virus. Are there any disruptions or genetic variations in the immune systems of those affected? And what, if any, are the long-term effects on the brain? What neurological symptoms can arise, and why are some patients affected by them?

“There is a great need to gain more knowledge about post-COVID syndrome. Competence within the research fields covered by this call is high in Sweden, which is reflected in the applications we have received. We therefore have good preconditions to increase the knowledge on many fronts, and in the longer term to improve the care and treatment of the patients affected,” says Madeleine Durbeej-Hjalt, Secretary General of the Scientific Council for Medicine and Health at the Swedish Research Council.

The call is based on a Government mandate External link.

Grant decision and statistics

In Swedish:

50 miljoner till forskning om postcovid
https://www.vr.se/aktuellt/nyheter/...-50-miljoner-till-forskning-om-postcovid.html

https://www.vr.se/download/18.61ae4c9917ce9a92048b7f2/1637048995606/Beviljade_bidrag_Postcovid 2021.xlsx

 

[mango]

Mainstream article about tiredness and fatigue, with Anna Andreasson. The study is mentioned.

Trött hela tiden? 9 möjliga orsaker
https://www.expressen.se/halsoliv/halsa/sjukdomar--besvar-1/trott-hela-tiden-9-mojliga-orsaker/

Google Translate, English ("Tired all the time? 9 possible causes")

Fatigue linked to covid-19

Together with her research team, Anna Andreasson is looking at the effects of fatigue on long-term covid symptoms, known as postcovid.

As the pandemic is still ongoing, there is understandably little research on the subject.

- We are studying how fatigue and its consequences relate to fatigue in exhaustion disorder or ME/CFS. However, as described, it seems to be somewhat reminiscent of both diagnoses.

Also, not many people have been diagnosed with it.

- There are many who have experienced symptoms after covid, with fatigue that does not go away with rest being one of the most common. The fatigue doesn't seem to be related to how sick you were when you actually had the disease.

ME/CFS - a rare but tough diagnosis

In ME/CFS, formerly known as chronic fatigue syndrome, everyday tasks can become almost impossible to perform.

- It's a very specific diagnosis where you have this fatigue that can't be rested away, and is worsened by exertion.

ME stands for myalgic encephalomyelitis, which refers to muscle pain and inflammation in the brain and spinal cord. CFS stands for chronic fatigue syndrome.

- It is diagnosed only after ruling out many other explanations for chronic fatigue, such as problems with the thyroid gland.

There is still little research on exactly what is happening in the body, says Anna Andreasson, but there is some support for some form of immune activation in some patients.

- Many patients report flu-like symptoms with swollen, tender lymph nodes, sore throats, feverish sensations, increased sensitivity to pain and body aches. Patients also describe symptoms of the nervous system being affected with blood pressure drop and palpitations.

Other symptoms include headaches, muscle and joint pain and difficulty concentrating.

 

[Anna H]

In the latest version of the research protocol there's a mentioning of a 'sister-studie' being planned in Region Östergötland. It will have a separate ethics application.
I contacted Anna-Karin Norlin, the lead researcher for the upcoming 'sister-study', and asked if an ethics approval had been made. Her response came today :

Glad you are interested in our study. We are working on the ethics application, which has not yet been submitted. In principle, it is the same study as you read about in Stockholm, but the local conditions with biobank etc. require a separate ethics application for Östergötland. What will be described more clearly in our project plan is that we also intend to study metabolomics in the whole cohort (Stockholm and Östergötland), as we have that expertise (Professor Bijar Ghafouri). Furthermore, we are also planning functional MR studies (Professor Maria Engström) of a small proportion of the participants.

Translated with www.DeepL.com/Translator

 

[Andy]

Full title: A Longitudinal Study on Longstanding Complicated Fatigue: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Burnout Syndrome and Post-covid Fatigue

Brief Summary:
The purpose of the study is to investigate if there are common biopsychosocial vulnerability factors for developing and maintaining fatigue, regardless of the diagnosis. The investigators also believe that subgroups differ in terms of these factors. Participating patients with ME/CFS, burnout syndrome and post-covid fatigue complete a web form at inclusion and after 1, 2, 4, 6, 12, 18 and 24 months. There is no upper limit for the number of participants in the web survey. 150 participants are asked to submit blood samples at a local laboratory in connection with the questionnaires for analysis of inflammatory markers and one urine sample for analysis of nutritional markers. Two control groups are included, 150 patients with rheumatoid arthritis and 50 healthy individuals. The longitudinal design makes it possible to investigate how inflammatory markers, nutritional status, symptom burden, health related quality of life co-vary over time and how work ability and sick leave is affected.

Detailed Description:
Fatigue is associated with impaired health and severely impaired quality of life and function and there is a need to explore similarities and differences regarding biopsychosocial vulnerability and maintenance factors and consequences in terms of work ability and sick leave in chronic fatigue syndrome (ME / CFS), burnout syndrome (BS) and post-covid fatigue to be able to improve individualized interventions for patient with persistent fatigue. The study examines inflammatory markers, nutritional status, symptom burden, neuropsychiatric conditions, work ability, and sick leave in a longitudinal cohort study over 2 years in patients with different diagnoses who all suffer from persistent fatigue. The hypothesis is that there are common biopsychosocial vulnerability factors for developing and maintaining fatigue, regardless of the diagnosis. The investigators also believe that subgroups can be identified that differ in terms of these factors. The longitudinal design makes it possible to investigate how inflammatory markers, nutritional status, symptom burden, health related quality of life co-vary over time and how work ability and sick leave is affected.

In this study participating patients with ME/CFS, BS and post-covid fatigue complete a web form at inclusion and after 1, 2, 4, 6, 12, 18 and 24 months.

Adult patients registered with a diagnosis of chronic complicated fatigue (ME/CFS or post-covid syndrome) in Take Care (medical record system in Stockholm County, Sweden) or with burnout syndrome from Stressmottagningen Stockholm, will be asked to participate in the study.

• Patients with ME/CFS will be recruited at the Department of Behavior Medicine, Karolinska University Hospital Solna or reached by advertising on social media
• Patients with Post-covid-syndrome will be recruited at Karolinska University Hospital or reached by advertising on social media
• Patients with burnout syndrome will be recruited at Stressmottagningen Stockholm

At baseline, a clinical assessment is performed at the clinic and the patient is asked to leave a venous blood sample and complete a questionnaire. The patients are asked for further blood samples and questionnaires at 1, 2, 4, 6, 12, 18, and 24 months after baseline. 150 participants, 50 in each diagnostic group, are asked to submit blood samples for biobanking at a local laboratory in connection to the questionnaire time points for analysis of inflammatory markers. C-reactive protein (CRP) is analysed at the time of blood samples. They are also asked to give one urine sample for analysis of nutritional markers and to submit a 3-day diet diary for evaluation of dietary intake by a registered dietitian. Participants that only fill out the web-based questionnaire will be included. There is no upper limit for the number of participants in the web survey.

A pilot study with 20 participants with ME/CFS started in 2018 to test and revise the design of the present study. These subjects will be counted in the group of 50 participants with ME/CFS diagnosis when available data allow.

In addition to the participants with persistent fatigue, two control groups are included in the study. 150 patients with rheumatoid arthritis (RA) recruited from the Karolinska University Hospital Rheumatology department and 50 healthy controls. The RA controls fill out the illness generic questionnaires on paper and disease information is taken from the national registry for rheumatic disease and CRP and erythrocyte sedimentation rate (ESR) data is taken from the medical record. The healthy controls follow the same procedure as the patients with persistent fatigue but only fill out the form and give blood samples at one time point.

Research questions:

• Are there differences in patient reported fatigue dimensions, symptom burden including post exertional malaise, sleep disorders, health related quality of life, or inflammatory markers, nutritional markers and dietary intake, between patients with ME/CFS, BS and post-covid fatigue, patients with RA and healthy controls?
• Are inflammatory markers and nutritional status associated with the development/recovery of fatigue and symptom burden in ME/CFS, BS and post-covid fatigue?
• Can different subtypes of patients be identified based on latent factor analysis including fatigue dimensions, symptom profile, neuropsychiatric symptoms, inflammatory markers and nutritional status?
• How does inflammatory markers, nutritional status, symptom burden and health related quality of life influence work ability and sick leave in patients with persistent fatigue over time?

The project group consists of a multidisciplinary team from Stockholm and Linköping universities as well as clinically active at clinics in the two regions who often meet patients with persistent fatigue.

https://clinicaltrials.gov/ct2/show/NCT04955587

 

[MSEsperanza]

Previous research by Andreasson / Jonsjö:

https://www.s4me.info/threads/the-role-of-low-grade-inflammation-in-me-cfs-chronic-fatigue-syndrome-associations-with-symptoms-2019-jonsjö-et-al.13063/

https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-250#post-392934

https://www.s4me.info/threads/accep...fs-discussion-thread.23207/page-2#post-390054

This article is based on their ACT study (same ethical approval application/research plan from 2015). Some related S4ME threads here:

The role of low-grade inflammation [...] in ME/CFS (planned study) Andreasson et al

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.

Patients with ME/CFS and chronic pain report similar level of sickness behavior as individuals injected with bacterial endotoxin... 2019, Jonsjö et al

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

Discouraging.

 

[rvallee]

More pointless waste. How can they even pretend to study generic fatigue, let alone the crippling exhaustion of ME, when they have such a misleading understanding of it? Everything about this and the people involved stink. I don't care that they are wasting their time but they are misusing resources that could be useful and instead are wasted on more ideological junk.

The amount of performative nonsense in medical research is infuriating. It serves absolutely no purpose and offers no benefits whatsoever, especially the 100th or so nearly identical "just exploring" wishy-washy stuff.

 

[mango]

Anna Andreasson took part in the BPS oriented ME seminar in Oslo in October 2022, according to this tweet:

Someone has shared the invitation, speakers and participants following a FOI request on twitter:

 

[mango]

Andreasson is quoted in a news article about long covid today.

 

[mango]

Forskare vill hitta orsakerna till långvarig trötthet
https://www.su.se/psykologiska-inst...ta-orsakerna-till-långvarig-trötthet-1.711394

Researchers want to find the causes of long term fatigue

Department of Psychology / Latest news

5 February 2024

For two years, Anna Andreasson and colleagues will follow people who have been diagnosed with ME/CFS, exhaustion disorder or post-covid and who suffer from long-term fatigue.

Anna Andreasson is an associate professor in psychoneuroimmunology and works with the research project Fatigue cohort: A longitudinal study on long-term complicated fatigue.

What does fatigue actually mean, is it a diagnosis?

Fatigue is a tiredness that does not go away after rest. Fatigue itself is not a diagnosis but it is a very common symptom seen in many diseases with a variety of causes. Sometimes the cause of fatigue is known, for example in the case of an ongoing infection, an autoimmune disease or after a stroke. Many times patients suffer from fatigue without the cause being clear.

In Sweden we have two diagnoses where fatigue is a main symptom: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and exhaustion disorder. Fatigue is also one of the most common symptoms of post-covid.

Tell us more about the fatigue cohort! What do you want to find out?

We are interested in fatigue as a symptom and therefore in our study we include patients who have been diagnosed with ME/CFS, exhaustion disorder or post-covid with fatigue. We believe that the persistent fatigue in these patients may be due to a variety of factors, so in the study we are investigating a wide range of factors, such as immune function, nutritional status and metabolism, sleep, psychological and social factors. We think we will be able to identify different subgroups of patients with different profiles in biomarkers and symptoms.

Why is it important to study fatigue?

Fatigue often causes a great deal of suffering in affected patients, so it is extremely important that we gain a better understanding of the mechanisms behind it. My opinion is that we are about two decades behind the development of knowledge about pain, where new interesting findings have emerged. My hope is that we will see exciting things for fatigue as well, which in turn will allow us to help affected patients in a better way.

How do the studies work?

We follow the participants for two years with a total of eight measurement sessions where participants fill in questionnaires and provide blood samples for markers of inflammation and metabolism. On one occasion, they submit a food diary and a urine test. We also weigh the participants on a scale that calculates their body composition.

How far have you come?

We are almost ready to recruit patients so we can start analysing the data. Then it will take two years for all participants to go through the whole study. So things are going well, but we are still looking for some participants with post-covid and ME/CFS! In the spring, we will also recruit people who do not suffer from fatigue as controls. They will be asked to fill in questionnaires, provide blood samples, dietary diaries and urine samples at one point.

Read more about participating in the study

Read more about the research project

Read more about Anna Andreasson

Footnote: The research project is a collaboration between Stockholm University, Karolinska University Hospital Solna, Linköping University and Region Östergötland. The responsible researcher in Region Östergötland is Anna-Karin Norlin, PhD, a general practitioner working at the fatigue clinic at Linköping University Hospital. The project team includes two doctoral students, Therese Liljebo, a licensed dietician, and Hannah Linnros, a licensed psychologist, both with extensive clinical experience.

 

[rvallee]

My opinion is that we are about two decades behind the development of knowledge about pain, where new interesting findings have emerged.

I am not aware of any such thing, and my impression is that the very same things are being pushed. Although to be fair, it's probably accurate to say that it's 2 decades behind, it's also 2 decades ahead, since neither field have changed from the old failed psychological rehabilitation paradigm. 40 years and no substantial change will do that.

If we look at the primary chronic pain NICE guideline, it's actually worse than the ME guideline, but not by much, and the field of pain medicine is filled to the brim with the same pseudoscience and obsession with exercising curing everything.

 

[mango]

Region Östergötland is looking for participants for a research study that sounds very similar to the study discussed in this thread. And it says it's in collaboration with Stockholm University. Is it the same study, perhaps?

(Maybe @MittEremltage knows?)

https://www.regionostergotland.se/r...t-vid-me-cfs-postcovid-och-utmattningssyndrom

Long-term fatigue in ME/CFS, post-covid and fatigue syndrome

Would you like to participate in a study on long-term complicated fatigue in ME/CFS, post-covid and fatigue syndrome? We are looking for patients, healthy controls and recovered individuals.

At the Pain and Rehabilitation Clinic, Linköping University Hospital, we are now conducting a study together with Linköping University, Karolinska Institutet and Stockholm University on patients with any of the diagnoses postcovid, fatigue syndrome or ME/CFS and long-term complicated fatigue. We are investigating the role of low-grade inflammation, protein and small molecule patterns, nutrition and body composition, co-morbidity and psychosocial factors in the occurrence and intensity of fatigue and associated symptoms, and in the course of symptoms over time. We also want to study brain function in these different conditions. The aim of the study is both to identify biological markers and to identify subgroups of these conditions that may benefit from different types of treatment.

Who can participate?
We are looking for people aged 18-65 years with long-term complicated fatigue and one of the diagnoses ME/CFS, post-covid or fatigue syndrome and a disability of at least 50% for at least 6 months.

For the study we also need two control groups:

-healthy controls, who do not suffer from any condition with associated fatigue or sleep disturbance

-people who have recovered from any of the above conditions.

How does the study work?

Patients with fatigue are followed for 2 years with blood tests and digital rating scales on 8-9 occasions. You will also complete a diet diary and may be asked to participate in an MRI scan, provide nasal lavage fluid and urine samples and measure body composition. Healthy and recovered controls provide blood samples, fill in rating scales and participate in examinations on 1-2 occasions.

More information and registration
Contact us if you are interested in participating or want to know more:

E-mail: fatiguekohorten@regionostergotland.se
Telephone: 010-1034914

Responsible for the study
Anna-Karin Norlin, med.dr, specialist doctor, Pain and Rehabilitation Clinic

 

[MittEremltage]

Maybe @MittEremltage knows?

I am not sure but e-mail adress say fatiguekohorten. So likely it is.

 

[mango]

https://www.su.se/forskning/forskningsprojekt/fatigue-kohorten