• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ImmunoME (Oslo University Hospital, Norway)

mango

Senior Member
Messages
905
The ImmunoME study at Oslo University Hospital, Norway, is now recruiting patients suffering from severe or very severe ME.

The aim of this project is to reach a better understanding of ME from a genetic and biological perspective. They are especially interested in investigating if the immune system plays a part in the development of ME.

They want to make a thorough mapping of genes that are central to the immune system, to look for differences between ME patients and controls.

They also want to investigate the presence of antibodies.

They would like to recruit patients with the most severe form of ME.

The analyses will be carried out on a group level, so they will be unable to give individual feedback to the participants.

Who can participate?
  • 18 years or older
  • ME diagnosis according to the Canadian criteria [ICC according to REK, see below - mango]
  • You have the most severe form of ME, or you have had it in the past (continually, for at least 10 years)
When they say the most severe form, they mean people who are confined to bed almost all day and unable to work or perform activities of daily living.

They are willing to do home visits, if necessary, to collect the blood samples.

Investigators
Benedicte A. Lie
Ola Didrik Saugstad
Torstein Egeland
Marte K. Viken
Asgeir Lande

More info and contact details here:
http://me-foreningen.com/meforeningen/?p=8952

The info in this post is my sloppy translation of some parts of the Norwegian article linked above. Please let me know if you spot any errors!
 
Last edited:

mango

Senior Member
Messages
905
Here's the info page on the Norwegian REK website (Regional Committees for Medical and Health Research Ethics):

https://helseforskning.etikkom.no/i...627288&p_parent_id=630983&_ikbLanguageCode=us

Immunologi og genetikk ved myalgisk encefalopati

Scientific title:
Genetic and functional genetic studies in myalgic encephalomyelitis (ME) to investigate the potential involvement of the immune system and reveal biomarkers

Prosjektbeskrivelse:
Prosjektet bygger på hypotesen om at immunsystemet er involvert i utviklingen av ME, og at ME har visse felles trekk med autoimmune sykdommer.

Generelt har genetiske studier i CFS/ME vært få og sub-optimale i studiedesign. Likevel gir studier av tvillinger og familieopphoping sterke tegn på at CFS/ME er arvelig (Crawley and Smith, 2007), og dermed at genetiske komponenter eksisterer og bør identifiseres for å få økt innsikt i risikofaktorer og deres kliniske relevans. Dette vil gi økt innsikt i hvilke biologiske veier som er involvert i patogenesen.

Vi vil undersøke betydningen av autoimmune risiko varianter både fra arv og miljø i henhold til ME.

Den genetiske risikoprofilen i blodprøver fra pasienter med ME diagnose i henhold til reviderte Canadakriteriene (Carruthers et al, J Int Med, 2011) vil bli studert, og eventuelt korrelert med ulike sykdomsparametere.

Relevante molekylærbiologiske og statistiske metoder vil bli benyttet i analysene.

Google translated version of the project description above:
The project is based on the hypothesis that the immune system is involved in the development of ME and that ME has certain similarities with autoimmune diseases.

In general, genetic studies in CFS / ME have been few and sub-optimal in the study design. Nevertheless, studies of twins and families buildup strong evidence that CFS / ME is hereditary (Crawley and Smith, 2007), and thus that genetic components exist and should be identified in order to gain greater insight into risk factors and their clinical relevance. This will provide greater insight into the biological pathways involved in the pathogenesis.

We will examine the significance of autoimmune risk variants from both heredity and environment according to ME.

The genetic risk profile of blood samples from patients with ME diagnosis according to revised Canada criteria (Carruthers et al, J Int Med, 2011) will be studied, and possibly correlated with various disease parameters.

Relevant molecular and statistical methods will be used in the analyzes.
 
Last edited: