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

[*GG*]

You have to be a member to read the article. Can you give us the gist of it?

I think anyone can join for free!

GG

 

[Tia]

Aaah.. So they're correlated. I see.. Interesting this. Because I feel like I have an infection of somesort, like a flu that never breaks out.

From the online library article:

Conclusion

In patients treated with rituximab for rheumatic diseases, late-onset neutropenia is a clinically significant adverse event associated with marked B lymphocyte depletion and severe infections. The incidence of late-onset neutropenia appears to vary with autoimmune disease type.

 

[justinreilly]

Good point! Have you seen this: http://www.ibtimes.com/articles/197...-any-viral-infection-mit-scientists-draco.htm ?

Wow, that's amazing! A broad-spectrum anti-viral that could theoretically destroy all viruses!! too bad it will probably take a billion years for it to be tested and approved.

Someone in the comments section of the story on the MIT website, said what if a virus mutates and is able to alter the cell-death mechanism to kill all the cells in the host's body? That wouldn't be an advantage to the virus of course, but there are plenty of mutations in viruses that are not advantageous. Maybe i'm getting ahead of myself, but i guess we could hope that any person that happened to would die quickly and thus not be able to transmit the virus.

 

[justinreilly]

So, does anyone know the current status of proposed trials for rituximab? Someone said Dr. Enlander posted on his facebook that he was planning (w Dr. Bell) to do a trial. Are they funded?

The country of Norway said it will award almost $400K to Fluge and Mella for a trial. I think they needed more money. is that right? have they got any? are they planning to start?

Haven't heard of any other funding. You'd think that NIH, CDC, CAA, CFI would provide emergency funding ASAP. Extremely disappointing that they haven't. They need to get this done now! Every day that goes by without advancing this critical science is a tragedy.

I encourage everyone to join me in writing to these orgs to provide immediate funding! Thanks!

 

[oceanblue]

Traditional 0-100 scores
Rituximab: baseline 44.9, mean max score 76.5; gain = 31.6
Placebo: baseline 47.3, mean max score 56.5; gain = 9.2

To really push these figures, you could allow for the fact that 4 ex 13 (with SF36 data) rituximab patients were non-responders. Assuming non-responders improved as placebo patients gives a score of 86.4 for responders, and 85 is probably an acceptable score for healthy (it's the PACE protocol recovery threshold).

Using peak scores for responders only is possibly cherry-picking in the extreme (particularly as these figures are estimates, calculated from the available data). Nonetheless, it does suggest a dramatic response to rituximab in this study, albeit temporary. Now all we need is replication of the findings.

 

[biophile]

Autoimmunity comes for a reason, and that reason can very well be infections...

Saw this in PubMed about MS. Could this be one day be said for ME?

"Although the etiology is unknown, MS is thought to be an autoimmune disease triggered by a viral or other infectious agent in genetically susceptible individuals."

http://www.ncbi.nlm.nih.gov/pubmed/22142753

 

[Tia]

I knew it!! Mikovitz was right!

 

[Tia]

Yup, that's the downside with it, they say ten years for it to be approved and get out on the marked but DAMN, give me this shit!

 

[redo]

Yup, that's the downside with it, they say ten years for it to be approved and get out on the marked but DAMN, give me this shit!

I have been thinking the same about DRACO, it might work wonders. But some of us will already be in the grave before it's FDA approved...

But, RTX will have it's patent expire within a couple of years (maybe making it half as extremely expensive), and within a couple of years I guess more supporting data is available.

 

[Enid]

Auto - immune triggered by viral - but didn't we all know that ?

 

[snowathlete]

A product that is already in use (albeit for other illnesses) is gold for us, because it should take less time to reach us. Even so, RTX is still a few years away i guess (assuming it proves to be viable as a treatment)

Once approved there will of course be a flood of people wanting the treatment, and there would be a bottleneck i guess because it has to be administered under care...probably be a fully year before all of us get the treatment once available.

Thats my guess at anyrate...

 

[usedtobeperkytina]

I would think, seeing what happened with the anti-retrovirals, that if another study shows good results, even before FDA approval, some patients will be able to convince their docs to try it on them, considering it is already approved for use for multiple other illnesses. (How do they get to use it without the FDA approval for use for that illness? It will depend on money and doctor's judgment.)

I am glad that we have some private funding to help with this with all these new initiatives, research groups and centers. Surely, they will follow the science and this is the most promising at the moment. I can't wait to see what Klimas comes up with as she is an immunologist. Surely she is very interested in this, and with her move to NOVA, she is set for more resources to accomplish more.

Plus, NIH just announced a request for grant applications that could be applied to RTX research. Usually, NIH funds the studies that will do more in moving the science forward.

Tina

 

[Tia]

Hmm, interesting.. I also find it to be a coupal of years. Three in my book. So in 2014 we'll get it. Damn, Im SO ready, I just say: -Hook me up, bumboy! I want meds!

 

[Snow Leopard]

I'm wondering why more people haven't rated the PLoS one article yet? (1-5 stars)

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

 

[sensing progress]

I'm wondering why more people haven't rated the PLoS one article yet? (1-5 stars)

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

If I click 'rate this article' it prompts me to "Login to Your PLoS Journals Account"... which I don't have.

 

[alex3619]

Hmm, interesting.. I also find it to be a coupal of years. Three in my book. So in 2014 we'll get it.

Hi Tia, my best guess is two to twenty-five years. Two with political will and funding, twenty-five with no will and no funding, just trudging along. In reality 5-10 years is more likely. The studies that prove its effective will probably take another 3 years, and then the fight begins to get governments and insurance companies to use this therapy. It could be a long fight, we need to begin moving in that direction NOW. Bye, Alex

 

[SarahLaBelle]

Could it be that they didn't make more of them because they are not familiar with the literature evaluating ME treatments (and how poor some of the outcomes are)?

Jenny

The Norwegian researchers seem to be very strict in their analytic methods, and I applaud that. May others follow their lead.
Tom has figured out how to compare what they did with the work of less strict analyses, which is useful for us who have had years of reading those papers. It would be great, to me, if all papers in future normalize their results, and we all learn to understand the significance of the numbers thus presented.

My too-optimistic streak is popping through.
As to your direct question, in a way I hope those scientists did not waste too much of their time with all-in-your-head papers. Those are so often so badly done, violating the most basic rules of scientific analysis and reporting.
Those poor papers are published anyway, which is what raises the big questions to me. Sure, do bad work, but why does it get past the peer review all the time?

Sarah

 

[Tia]

Anything new yet? I know they're starting a study this spring with way more patients in it, a bigger one, that is. But what about the american scientists who came up with the same results where the patients were cured and who thought the rituximab will be out in about a year?

 

[Tia]

God Alex, don't say that. :sad: I can't take any more of this laying in bed all day every god damn day anymore..i feel like I'm dying. This has got to end so we can live our lives, we can't loose hope now. Not when we're so close.

 

[SpecialK82]

But what about the american scientists who came up with the same results where the patients were cured and who thought the rituximab will be out in about a year?

Hi Tia, I haven't heard about any american scientists getting the same results, could you provide a link or source? I would be very excited to read it. I haven't read this entire thread so my apologies if it has been mentioned before.

I have heard of at least two American doctors that are going to start studies - Dr. Lapp in North Carolina and Dr. Endlander in New York.

I agree - we need a treatment, we need something this year.