Lillestrøm Health Clinic in Norway researching ME/CFS and retroviruses

I realize this information will be of interest for a broader audience that does not speak Norwegian, so I made a translation of this post. :-)  (I just don’t like the Google Translate results…)

Many of you already know that the doctors and researchers at Lillestrøm Health Clinic in Norway are doing research on retroviruses and ME/CFS.

Now, the new website “Pasientfora” (forum for patients) has published the project description for this study regarding gammaretroviruses in ME/CFS-patients in Norway. It’s very interesting!

The official title of the study is: The Norwegian study of CFS, NO-CFS, Stage 1: Confirmatory study for the detection on Gamma-retrovirus related Gene Sequences.

Academically strong project team

The project manager of the research project is Dr. Mette Johnsgaard, general manager, physician and researcher at Lillestrøm Health Clinic. She has a very strong project team with her:

- Professor Ola Didrik Saugstad, Rikshospitalet University Hospital in Oslo. (Supervisor of the research study)
Researcher Prof. Dr. Med Judy Mikovits, director of research Whittemore-Peterson Institute (WPI), Reno i USA.
Researcher Dr. Med. Mauro Malnati, group manager for human virology at the San Raffaele Scientific Institute in Milano, Italia.
Researcher and physician Dr. Ingrid Lund, Lillestrøm Health Clinic
Researcher and physician Dr. Sigrid Holterman Holmen, Lillestrøm Health Clinic

The project started in October 2010 and is estimated to last until april 2011. The project is financed by Lillestrøm Health Clinic and the other participating research institutes.

Exciting hypothesis

According to the project description, the hypothesis to be studied are:

“Patients with severe, disabling ME/CFS have an ongoing MLV-related virus infection that is the main reason for their disease. Close relatives may or may not also have a latent retroviral infection. We want to look further info differences between extremely disabled patients, healthy relatives, and healthy controls in retroviral prevalence.

We will also look into markers for immune dysfunction including cytokine profiles, and also antibody detection. We believe it is possible to find biomarkeds that can be used to follow the disease.

We believe it is possible that the retroviral reservoir is the B cells. This can explain the positive effect of rituximab. Mature B cells expressing the CD20 will then have to carry the major retroviral load. However, as immature B cells emerge from stem cells in the bone marrow and plasma cells, the increasing retroviral load contributes to the increasing symptoms reappering as the effect of rituximab lessens over time.”

The project is approved by the Regional comitte for research ethics in medicine in Norway.

Dr. Johnsgaard says the following about the background of the study:

ME/CFS is a disease with unknown ethiology, and may lead to severe symptoms and permanent reduced function and disablement. Dysregulation of the immune system is a possible pathogenetic factor. The last year, two strong studies has been published showing a possible connection between murine leukemia virus-related viruses and ME/CFS, though it is still uncertainty if the findings are specific and relevant for the disease. Norway has, in addition to a larger prevalence of the disease, also a large number of patients with ME/CFS who are extremely ill (mostly bedbound, with a Karnofsky score of 40 or below.)

We want to compare findings from these patients with healthy controls. In addition to looking for gene sequences from MLV-related viruses, we will look for other caracteristics in the immune-system cells that can give us a broader understanding of the disease. This study will be very important in starting any treatment trials.

The statement from Dr. Johnsgaard shows that they not only wants to look at how MLV-related viruses are involved in the understanding of ME/CFS, but that they also have a broader plan about starting possible treatment trials. This is knowledge that not only will benefit the patients at Lillestrøm Health Clinic, but alle ME/CFS-patient! With biomedical research on the table from the Norwegian patient population it will be hard for Norwegian health authorities to ignore biomedical mechanisms and necessary treatment of such.

Patient selection

The 29 patients included in the study have a known ME/CFS-diagnosis based on the Canadian criteria, and substantial reduced functional capacity with a Karnofsky-score of 40 or below. Children under the age of 12 is also included in the study.

A group of healthy controls with close contact with the patient is also included (family members etc.) and a control group of healthy individuals without contact with patients. (Total of 33 persons.)

Blood samples of patients will be independently analysed in laboratories both in Italy (San Raffaele Scientific Institute) and in USA (WPI).

Read more!

The full project description can be read here. (In English!)

Information provided to the participants in the study can be read here. (Norwegian only, sorry…)

The information in this blog post is provided from Pasientfora. Thank you for making this information available. Most of this information is translated from Norwegian by me, and I take full responsibility for any errors made in the process.

Update 27.03: ESME has also posted my blogpost on their webpage.

 

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18 Responses to Lillestrøm Health Clinic in Norway researching ME/CFS and retroviruses

  1. selsius 09/03/2011 at 17:37 #

    Veldig spennende. Jeg for min del har jo ment hele tiden at XMRV er selve roten til at sykdommen, fordi den biten passe som hånd i hanske sånn jeg opplever sykdommen. Men, det er alltid et men, og kontroversen fortsetter med full styrke.

    http://news.sciencemag.org/sciencenow/2011/03/fresh-doubts-about-connection-be.html

    Så nå vet jeg ikke lenger hva jeg skal tro. Det er ikke lett dette her.

    • ~SerendipityCat~ 09/03/2011 at 17:50 #

      Jeg er enig, det er et vanskelig felt og det tar nok fortsatt en god stund før vi får noe “sikker viten” om dette. :-(

      Jeg – som deg – føler også at XMRV passer som hånd i hanske. Men vet jo ikke enda. Vi får prøve å være forsiktig, men optimistisk avventende kanskje?

      Jeg er ikke helt sikker på hva de nye funnene betyr at XMRV kan være resultatet av noe som har skjedd i laben. Men betyr det at det er helt utelukket at det likevel kan føre til sykdom? Og hva med de som mener at dette viruset har eksistert “eviglenge”? Fortsatt mange uavklarte spørsmål her, og i og med at vi snakker om en stamme virus, så finnes det vel også mulighet for at det er ulike kilder kanskje? Jeg vet ikke, nå begynner diskusjonen å gå litt over hodet på meg, det må jeg bare innrømme.

      • selsius 09/03/2011 at 17:58 #

        Det går vel litt over hodet på enkelte forskere og tror jeg. :)

        Det er WPI som sitter med nøkkelen her. Så lenge de finner antistoffer mot dette viruset, er det ikke snakk om forurensing. WPI sa for en stund siden at de viste hvordan dette viruset svekket immunforsvaret og ga sykdom. Det er vel data som kommer snart? Mitt inntrykk er at Dr. Mikovits og WPI er alltid et hestehode foran, så får vi tro de er det nå også!

        Det er underlig og følge med på dette som pasient, den ene dagen føles det som løsningen er veldig nær, for så og være milevis unna den neste dagen. Så jævla irriterende!

        • ~SerendipityCat~ 09/03/2011 at 18:14 #

          Hahaha, ja der sier du det! Så jævla irriterende!! Den ene dagen har man lyst til å slenge forskningsrapporter i bordet og rope “HAH! TA DEN DU!!”, mens den neste er det full forvirring igjen…

          Jaja.. i hvertfall trenger vi ikke såpeserier på TV… nok drama i hverdagen!

    • ~SerendipityCat~ 09/03/2011 at 17:55 #

      Dr. Deckoff-Jones har jo en litt annen vinkling på det: http://treatingxmrv.blogspot.com/2011/03/cover-up-and-contamination-theories.html

      Hun mener at denne celle-linjen de nå refererer til ikke kan være kilden til XMRV-finnene, for det første siden den ikke ble brukt i XMRV-studiene vi kjenner til, og dessuten siden den bare har eksistert siden sent på 1990-tall.

      As for the 22Rv1 cell line being the source of XMRV contamination responsible for the whole mistaken affair, none of the labs involved in the Science paper Lombardi et al, have ever used this cell line. They couldn’t have contaminated subjects’ blood with virus produced by a cell line which all three investigators at different institutions can prove beyond a shadow of a doubt never entered their laboratories (personal communication). Sillier still, is the idea that this supposedly singular event was the source of infection, since it has only been around since the late ’90s: A new human prostate carcinoma cell line, 22Rv1. Sramkoski

      • selsius 09/03/2011 at 18:11 #

        Ja det er merkelig at de ikke gjør eksakt det WPI gjorde da de fant viruset. Det er merkelig at så mange skal lage seg sin egen sannhet ut fra si eget ståsted! Er ikke noe rart det blir mye tull og uthaling av verdifull tid.

        • ~SerendipityCat~ 09/03/2011 at 18:15 #

          Jeg har så mektig lyst til å filleriste alle som publiserer noe på feltet uten å gjøre en eksakt replikeringsstudie!!! NEKTE dem å publisere før de faktisk HAR gjort akkurat det samme. Synd jeg ikke er verdenshersker egentlig.

          • Lothiane 09/03/2011 at 18:45 #

            Ja, til SerendipityCat som forskningsminister! :D Eventuelt også verdenshersker, jeg er sikker på du ville taklet det fint.

          • ~SerendipityCat~ 09/03/2011 at 18:54 #

            Lothiane: Hahaha, bare hvis jeg får noen supre tiara-hoffdamer!! <3

  2. Lothiane 09/03/2011 at 22:32 #

    Jeg stiller klabert opp som tiarahoffdame anytime! :D

  3. Et liv å leve 10/03/2011 at 16:18 #

    Klarer ikke riktig å holde konsentrasjonen oppe til å forstå hva det her handler om. Men det ser veldig interessant ut. Har skrevet et brev til min lege og sagt at jeg ønsker å teste meg for XMRV den dag de begynner med det i det offentlige. Når man følger de dere skriver om WPI, så ser det ut til at det kommer. Forskningsverdene er slik, dessverre. Det skal pisses inn revirer… ;)

    • ~SerendipityCat~ 10/03/2011 at 17:51 #

      Ja, det kommer. Det jobbes med å utvikle standard-tester, men Ting Tar Tid ja…. :-) Vi må bare klare å leve NÅ, og ikke forgå av frustrasjon mens det forskes…

  4. Zac 11/03/2011 at 08:19 #

    Fabulous! Thank you for translating this post for us. It’s wonderful work you are doing over there.

    I also hear Norway is the top-rated country in the world to live in this year.

    • ~SerendipityCat~ 12/03/2011 at 00:29 #

      Thank you Zac! I’m really hoping this research will prove useful for the ME/CFS-patients also outside of Norway.

      Norway is a good country to live in, but we still lack proper care of MECFS-patients here as well. It’s not as bad as for example the UK, but we have a lot of challenges. Many patients resorts to private, but expensive, clinics like the Lillestrøm Health Clinic to get help, because there is really not much offered from the public health system.

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Trackbacks/Pingbacks

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