Tag Archives: ESME

«Why XMRV-research is important for us all»: Utdrag fra åpningstalen på XMRV-seminaret i Oslo 28. nov. 2010.

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Kilde: ESME

During the last 2 decades, nothing had really happened in the field of ME/CFS. There was not much serious research, no real search for cures, and the disease received no credibility whatsoever despite the immense suffering of patients and skyrocketing prevalence numbers. The future for ME/CFS patients looked bleak….

And then came October 2009 with the publication of the Science-paper where Dr. Judy Mikovits and colleagues showed a correlation between a recently discovered retrovirus, XMRV, and ME/CFS. This study was a collaboration of 3 major American institutions: the National Cancer Institute, the Cleveland Clinic, and the Whittemore Peterson Institute. This was the first time that major institutions had collaborated on ME/CFS research.

This research was confirmed in August 2010 when another important study was published in the Proceedings of the National Academy of Sciences, PNAS. This study was done by the highly-respected Dr. Harvey Alter and colleagues from the National Institutes of Health in the US.

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Mulig genetisk feilregulering i ME/CFS hos barn og ungdom.

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Hentet fra ESMEs sider på Facerbook


Artikkel fra  Scientific Research ; Knowledge is power


Hypocortisolisme er et hyppig funn hos personer med kronisk utmattelsessyndrom (CFS) og kan spille en forklarende rolle i utviklingen av sykdommens symptomer. Den etiologiske mekanismen bak dette funnet kan være en genetisk variasjon i glukokortikoid reseptor-uttrykk (GR) eller økt motstand mot virkningene av glukokortikoider. Flere etterforskere tror at angivelige variasjoner i en GR (NR3C1) medierer uttrykk for kronisk utmattelse, muligens gjennom påvirkning av hypothalamus-hypofyse-binyre (HPA) akse- funksjonen [1]. I tillegg er flere immunologiske variabler knyttet til CFS. Den kjernefysiske faktor kappa-beta (NFkB) -veien er tungt involvert i cellulær transkripsjon og regulering, og har vist seg å være assosiert med utviklingen av CFS. NFkB- veien er direkte regulert av og påvirker tilstedeværelsen av GR [2]. Vår studie har fokusert på å vurdere om en slik inflammatorisk transkripsjon har oppstått i løpet av ungdomsårene. Funnene viser redusert uttrykk for NFKB1, NFKB2, og NR3C1. En reduksjon i uttrykket av disse genene kan ha effekter på immuncelle-funksjon og cytokinproduksjon, som kan forklare immunologiske funn sett hos personer med CFS.

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En litt «heavy» artikkel. Kom gjerne med kommentarer til oversettelsen, det var mye fagspråk og ikke helt enkelt.

Og om noen har lyst til å  forklare litt mer om hva dette egentlig betyr, så hadde det vært supert!;-)


I have a dream; 1st November 2010 – Lunchtime Protest at UK Department of Health (Blood Ban)

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ESME European Society for ME la i kveld ut flg. appell på sine FB-sider:

Link:  Klikk her

Merk spesielt denne linken: http://www.notsonice4me.co.uk – som også vises lenger ned i teksten.

1st November 2010 – Lunchtime Protest at UK Department of Health (Blood Ban)

I have a DREAM.

On Monday November the 1st I’d like the Department of Health in Richmond House, Whitehall to look out of their window and see a SEA of patients with ME or their families and friends responding to the blood donation ban on that starts… that day.

Mark that date in your diary and ask family members to help NOW.

When the Chief Medical Officer goes to lunch I’d like her to see ME patients and their family members with placards / handouts to say that WE KNOW the blood ban is really about XMRV and other viruses we could have.

The DOH say that the November 1st ban is merely to «protect ME patients».

If we needed protection from giving blood why not ban us 10, 20, 30 years ago? Many of us have been ill since the 80’s.

Have we really been in danger from donating blood all that time?

What about those of us asked to give quantities of blood for tests or facing operations? Why didn’t they tell us?

The reason is that the DOH is too scared to admit the truth. New Zealand, Canada and Australia, all came out and issued a blood ban this year. They were honest. The ban is due to a paper in «Science» that reported a retrovirus (called XMRV) found in the blood of patients with ME. We know that the virus is in the UK because ME patients have been privately tested.

The UK Department of Health issued a ban of people with ME giving blood for life but they stated that it was not related to XMRV. Dr Shepherd of the MEA said that this was «disingenuous».

So, let’s tell the Department of Health and the Chief Medical Officer what we think on the day. Tell them what we think about their decades of failure to treat ME and treat us honestly.

Come to Richmond House at number 79 Whitehall London SW1A 2NS or if you are not able ask someone to come on your behalf. If they cannot make a placard then ask them come and help give out leaflets. Members of the public are always supportive of us and good natured when they see us at demos. Lots of people always want to stop and talk.

We are meeting there at LUNCHTIME on the day. Our protest is peaceful and lawful. I’ve met with the Charing Cross Police. They do need to give official permission though and I was told that it is unlikely to be with-held.

If you cannot come on the day, volunteer to help. Send them a FAX or an EMAIL on the day. Send a POSTCARD or LETTER.

See the website and more info will be posted there closer to the time.

www.notsonice4me.co.uk (bookmark this now!)

Keep watching the website to check that police permission is given for the protest before you book any train tickets.

Start making your banners/placards now. If police permission is with-held we will use them on another day!

Please volunteer to help.

a.. Distribute this email,
b.. Offer to do press releases,
c.. Put handouts together,
d.. Contact the media and ask them to cover it

Don’t let this opportunity go by.

Remember, if you don’t do this – no one else is going to. It’s up to us to say «enough is enough».

I’d also like to pay tribute to Rivka and Robert’s USA «Time for Action» campaign which has inspired so many people around the world.


Warmest regards,
Annette Barclay
www.notsonice4me.co.uk (ME patient in London)