Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html

http://www.tv2.no/nyheter/innenriks...reakthrough-can-solve-cfsmystery-3615631.html

Full paper is here:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358

 

embargo's lifted...we can talk about this now...

 

Yep, I was there when they presented their findings at the IiME Conference back in May.

Well done to everyone for not leaking it out. Its been a LONG wait.

 

If anyone wants to see this information being discussed by the researchers themselves, it is on the Invest in ME DVD

http://www.investinme.org/IiME Conf...national ME Conference 2011 - Review Home.htm

 

I'm just reveling in the fact that the earllest news coverage out, right on the spot of when the embargo lifted, was in the NEW SCIENTIST.

World-class, some say world's leading, science publication....and it's BRITISH.

Dying to see what the rest of the UK media makes of this. Where are the quotes from Weasel?? We must hear them ASAP!

 

I have to admit that I always feared the rituximab findings would be used to re-cast ME as an auto-immune disease and distract from a retroviral hypothesis.

The type of B cells that are killed by rituximab (CD20) are the same ones that Judy Mikovits said contained the retrovirus.

In fact I remember her coming up to talk directly after Dr Mella and as she came to the stage she said that she was not surprised by their findings as the virus was in the CD20 B cells.

She praised their study. (That bit is not on the DVD)

At the conference the norwegians said they had failed to find XMRV but they also said they could not identify the expected autoantibodies either.

(I will now read the paper to see if they have found them yet.)

In the published paper the authors are open to a viral etiology in the form of a B-lymphotropic virus.

However they prefer an autoimmune hypothesis.

So the cause is as yet unknown.

 

The part of the video I liked best was the part where the presenter looked at the camera and emphatically said that the patients that he saw were really sick, and that CFS was a real illness. It was clearly aimed at the mental health crowd.

So, what now? Do we all go for it? The presenter mentioned that they had filed for a patent on the treatment. What does that mean? Does that mean that all other doctors are prohibited from using that treatment? It doesn't seem right that a group that made an accidental discovery should own the right to treat patients.

I am sending a copy of the paper to my doctor. I seriously doubt if he will give me the rituximab, but I see it as worth a shot anyway.

John

 

Rituximab costs a damn fortune, BTW. I doubt many of us would be able to pay for it out of pocket, even if a doctor would prescribe chemo drugs on spec, which I suspect 99.99% of them would not, as well they shouldn't. This is early work, and the studies are continuing - unfortunately, for now, only in Norway.

Sorry I haven't been following past threads on this - how does this result compare to the best possible results seen for Ampligen?

 

Currer:

The video presentation clearly left open the possibility of a viral, or retroviral, trigger for the illness. Their auto immune idea was presented as their opinion, not a proven fact.

John

 

European ME Alliance statement:

http://www.euro-me.org/news-Q42011-002.htm

The European ME Alliance welcomes the research by Fluge, Mella et al published on 19th October 2011 in Plos One.

This research clearly shows the physical basis of ME.

It also shows that patients had no difficulty in adjusting to normal life - something which makes redundant the previous attributions to psychological problems in this patient group.

Now we encourage public funding bodies in different countries to follow the example of this double blind placebo controlled clinical trial to start seriously investing in biomedical research into ME.

It is time to take this disease seriously and help patients regain their health and normal functioning.

European ME Alliance

 

Yes, John, I remember they were quite fair about the cause, leaving it open.

They were so excited, too. I spoke to Dr Mella afterwards. Wow, what a day!

 

We should all get a copy of this paper and KEEP IT ON US AT ALL TIMES for use in a tight spot.

It is OUR PASSPORT TO HUMAN RIGHTS.

It should stop the psyches dead in their tracks.

I intend to give it to my doctor. (No chance he'd watch the DVD)

 

Just out of curiosity, how much does it cost?

I don't know if the paper mentioned it, but the video mentioned that there is a new three year study underway using multiple injections over a period of 15 months. This paper is based on two injections given two weeks apart.

John

 

The cost to the NHS of 100-mg and 500-mg vials of rituximab is 174.63 and 873.15 respectively, excluding VAT
from NICE document
http://www.nice.org.uk/nicemedia/pdf/TA126guidance.pdf

 

Nice. But you know what bugs me? The Answer autoimmun disease. Thats basically another word for we don't know. There so many autoimmun diseases out there and still new stuff appears to be cause by autoimmun diseases. And noone knows whats causing this. Personally I don't see autoimmun disease as a real answer.
Its kinda like saying the bulllet caused the death of a person its not murderer and not trying to find out who pulled the trigger. Giving everyon bullet proof equipment and not worrying about all the people running around shooting.

 

Yep, my feelings exactly, Deatheye.

 

Personally... I don't care what caused it, how many people know why they have a disease? I want effective treatment so I can get my life back.

 

rheumatoid arthritis?

BusyBee included a link just now which indicates Rituximab has been used not only for cancer but for arthritis too.

Most distressing in the interview is the statement that it will be years before a treatment is available. Millions around the world are unable to work due to this illness. The cost to individuals and society is incalculable, not to mention that lives are destroyed in their prime.
I have to believe that somehow this is going to be available sooner than in 'years.' What can we do?

 

Hi Helene
I was suprised by the rheumatoid arthritis link.

Dr Shepard suggests trials in the UK, so we find someone to do trials.

 

So if I read this right a course of treatment is under 2000 a year, if i could find a doctor to prescribe?