New Fluge & Mella rituximab study: post MEDIA LINKS here

[Sasha]

I wrote:

Thank you for this article (and please excuse a British person’s lack of Norwegian!). It is vital for patients that more biomedical research is carried out into this devastating disease.

I hope that your readers will donate to one of the biomedical charities, such as ME Forskning in Norway (http://me-forskning.no/), who have supported this important work at Haukeland, or Invest in ME, who are fundraising for a UK rituximab trial and B-cell research (www.ukrituximabtrial.org).

The work of the Norwegian researchers indicates that this is now a treatable – even curable – disease. It affects over 25,000 Norwegians and over 17 million people worldwide.

This is a solvable problem but scientists need money to keep working. Many projects are ready to start as soon as they have the funds.

It is impossible to overstate the international importance of this Norwegian research. The use of rituximab and looking at autoimmunity is a huge breakthrough for ME. Norway is leading the rest of the world.​

 

[Sasha]

My comment in the German mag never did show up. Some of them don't, though - you just have to do your best!

 

[deleder2k]

I think the last part of the translation was a bit strange. I argued that it was a shame that the previous government, and the Research Council of Norway delayed the RTX study by 1 year (since they didn't fund them). The Norwegian Research Council decided to give millions on a study on ants - but not one penny on ME research. This was back in 2013. A year later the Public Health Minister instructed the council to approve and fund Haukeland.

 

[Aurator]

Here's a Danish version of events from "Dagens Medisin".
http://www.dagensmedisin.no/artikle...oldsbehandling-forlenger-effekt-av-rituximab/

 

[Sasha]

Here's a Danish version of events from "Dagens Medisin".
http://www.dagensmedisin.no/artikle...oldsbehandling-forlenger-effekt-av-rituximab/

Thanks, Aurator - that's the one we've just been talking about, though, and it's Norwegian!

We've managed to get a couple of useful comments on there.

 

[Aurator]

Thanks, Aurator - that's the one we've just been talking about, though, and it's Norwegian!

.

Sorry, Sasha, and there was me thinking I'd done a thorough search of the thread to check no-one had mentioned it.

 

[Sasha]

Sorry, Sasha, and there was me thinking I'd done a thorough search of the thread to check no-one had mentioned it.

When I find or get notified of a new story, I edit the first post on this thread to include it, so that's an easy way to check.

 

[Sasha]

Finland! Helsingin Sanomat, "the most prominent newspaper in Finland".

http://www.hs.fi/tiede/a1305967208662?jako=dbaa1312fa49f55688aec90f64ee3cc3&ref=fb-share

Can't read a word of it, but five comments already!

 

[Sidereal]

Finland! Helsingin Sanomat, "the most prominent newspaper in Finland".

http://www.hs.fi/tiede/a1305967208662?jako=dbaa1312fa49f55688aec90f64ee3cc3&ref=fb-share

Can't read a word of it, but five comments already!

Google Chrome translation:

Study: Cancer medicine helps fatigue syndrome
SCIENCE 07.03.2015 15:43
Jani Kaaro

Recent research suggests immune system problems underlying the chronic fatigue syndrome.

Chronic fatigue syndrome is a controversial illness. Researchers have debated whether the disease is entirely psychosomatic, and if it is a real disease, where it is due.

A few years ago it was suspected due to mouse leukemia virus, but the virus was the result of an error due to contamination of the samples. In the new studies, the virus is no longer found.

Norwegian researchers stumbled upon a different explanation in 2004, when they got over the patient, who had both lymphoma and chronic fatigue syndrome.

The patient was medicated with rituximab cancer, which destroys the immune system, antibodies produced by B-cells. The monitoring revealed that the patient was able to get rid of the fatigue syndrome symptoms.

A recent study of the effect of rituximab in chronic fatigue syndrome has been studied in 29 humans.

The results show that repeated treatments with rituximab can keep out of the symptoms for many years. Some of the patients have been free of symptoms for five years.

Haukeland University Hospital doctors, the symptoms begin to loosen up 2 - 4 per month, which is roughly the time, which is a medicinal product wears B-cell destruction.

If the medication is stopped, the symptoms return after a year, which again corresponds to the time it takes to get the immune system B-soluarsenaalinsa to its full potential.

If the observation proves to be correct, chronic fatigue syndrome may reveal an autoimmune disease. Researchers now speculate that any infection can obtain B cells to produce antibodies, which later turn against its own tissues.

The study published PLOS ONE.

 

[Sasha]

I thought earlier about putting a comment on and then just couldn't face the Finnish instructions.

Ah well! Finland will have to live without my wisdom (as they have, very successfully, for some millenia now).

 

[Valentijn]

My comment in the German mag never did show up. Some of them don't, though - you just have to do your best!

A lot of sites will automatically block any links. If the original message isn't immediately posted, and is awaiting approval, it might be best to repost with just the name of the charity in place of the link.

Some sites check through the blocked posts and approve them, but others might not check at all. And even if they approve eventually, it might not happen until the article and comments are no longer being viewed as much.

 

[Never Give Up]

I just found this in my Yahoo! news feed:

http://nextbigfuture.com/2015/07/anti-white-blood-cell-drug-causes.html

It's strangely written and a blog post, rather than a traditional news story, but, hey, it showed up in my news feed, right next to stories from Reuters and AP!

We may be witnessing a shift in public perception, I hope so!

 

[Sasha]

I just found this in my Yahoo! news feed:

http://nextbigfuture.com/2015/07/anti-white-blood-cell-drug-causes.html

It's strangely written and a blog post, rather than a traditional news story, but, hey, it showed up in my news feed, right next to stories from Reuters and AP!

We may be witnessing a shift in public perception, I hope so!

Thanks - I won't add this to my list since it seems to be a minor blogger (though well-presented) but it's interesting that his view is sympathetic and he understands the shifts in perception about the disease that have gone on.

 

[Sasha]

The New Scientist story has now had 15,000 FB 'likes' and 3,900 Google+ 'shares', which is good. This kind of reader response will encourage other good stories about the science on ME/CFS in the New Scientist.

Well done to anyone who liked or shared!

 

[alex3619]

A friend of mine just emailed me one of the links we already have, the blog on the trial at nextbigfuture dot com.

 

[Sasha]

Great opportunity for UK folks here who are able to phone (I'm not well enough for that ):

http://forums.phoenixrising.me/inde...-in-opportunity-tomorrow-weds-8th-june.38590/

 

[Cheshire]

Two French articles:

http://www.metronews.fr/info/syndro...medicament-enfin-efficace/mogh!IZetgO3nrxKc2/
It's a free newspaper largely distributed in public transportation, I don't know if it appears on the paper edition.

And a smaller one
http://www.santemagazine.fr/actuali...e-bientot-l-espoir-d-un-medicament-60938.html

 

[Sasha]

Thanks, @Cheshire - I've posted (held in moderation) on the Metro one. The other isn't commentable but good to see these stories appearing.

Weirdly, France is beating all other countries in its coverage of this!

I'll add these two to my masterlist in my first post.

 

[Never Give Up]

Two French articles:

http://www.metronews.fr/info/syndro...medicament-enfin-efficace/mogh!IZetgO3nrxKc2/
It's a free newspaper largely distributed in public transportation, I don't know if it appears on the paper edition.

And a smaller one
http://www.santemagazine.fr/actuali...e-bientot-l-espoir-d-un-medicament-60938.html

I popped the first article into Google Translate, it referred to the research subjects as "the guinea pigs"! Too funny.

I'd paste it here, but Google won't let me copy it...

 

[Cheshire]

Thanks, @Cheshire - I've posted (held in moderation) on the Metro one. The other isn't commentable but good to see these stories appearing.

Weirdly, France is beating all other countries in its coverage of this!

I'll add these two to my masterlist in my first post.

Yes, very paradoxical indeed! Every last research studies received a relatively important coverage in France, the psychiatric ones coming from the UK attracted nearly no attention. But ME/CFS is underdiagnosed, not recognised at all by SS, there are only 6 wards with a small consultation in university hospitals, no research. And CFS is thought to be a non discrete psychosomatic disorder by the vast majority of MDs...


@Never Give Up Cobaye, the term used in the article, is a synonym of guinea pig who were used in pharmaceutical research. Now it means someone participating in an experiment where the outcome is poorly known.