Reports from the "Invest in ME" conference--May 20th

[eric_s]

Wow, i think i can see another order coming ;-)

 

[Sasha]

Hi, a brief teaser, the explanation includes a comment that it can almost completely reverse the symptoms of ME in twenty four hours. I am now thinking of getting the DVD if orders are still being accepted. Bye, Alex

The emoticon doesn't exist for that one (I just checked!)

That's amazing. Can't wait to hear about it.

 

[Jemal]

Hi jemal, you can pulse dose though, and once we understand the mechanism, we can develop a better less toxic drug. Bye, Alex

ps I think that killing B cells is not the primary mode of action, 24 hours implies this

Yeah, I think you are right about it not being the primary mode of action. The immune system would also take a hit by killing off B cells, I guess? The drug doesn't distinguish between good or bad (infected) B cells?

 

[redo]

Yes, here's the relevent info:

"Their paper is now completing the peer review process and we would rather wait a little longer before distribution begins in order that we can include this presentation on the DVD as well.

This has forced a delay but we hope everyone will understand the reason for this. The research by Professor Mella and Dr Fluge, experts in their own (non-ME) field, could be ground-breaking."

Know how that works? Some peers (CFS specialists I guess, or perhaps immunologists) will give their comments (to the journal?) and let the authors reply to critical questions? If you got knowledge of the peer review process, than please lay it out.

 

[Sasha]

Know how that works? Some peers (CFS specialists I guess, or perhaps immunologists) will give their comments (to the journal?) and let the authors reply to critical questions? If you got knowledge of the peer review process, than please lay it out.

Hi redo - yes, that's exactly it. The journal's editor chooses reviewers (some journals invite suggestions for expert reviewers from the study authors) and sends the paper to them for comments. The reviewers make specific comments on the paper that they want answered and the reviewers also recommend whether the paper should be accepted, rejected, or accepted if satisfactory revisions are made in line with their comments. In the latter case, the authors revise their paper and resubmit it; if they have answered the comments it should then be quickly accepted with no further peer review.

The amount of time this whole process takes depends on the journal. It can be months but some journals are much faster.

 

[redo]

Hi, a brief teaser, the explanation includes a comment that it can almost completely reverse the symptoms of ME in twenty four hours. I am now thinking of getting the DVD if orders are still being accepted. Bye, Alex

Which drug are you talking about here Alex?

 

[Jemal]

Which drug are you talking about here Alex?

Rituximab, basically a chemotherapy drug that eliminates certain cells of the immune system. Some doctors in Norway have been experimenting with it in ME/CFS patients. The drug has already been used to treat certain automimmune disease. Apparently it resolved symptoms within 24 hours in patients. Which sounds great... unfortunately your immune system will take a hit and that's potentially dangerous. Some patients with Lupus have died taking this drug, because a virus reactivated and their immune systems were not able to supress it anymore.

Personally I also believe a virus like XMRV is associated and most likely the root cause of ME/CFS. Damaging the immune system might be a bad move as XMRV has also been associated with cancer.

Another thing to consider is that the relief of symptoms lasts only for a few months. So you would need regular doses of Rituximab to keep supressing symptoms.

So I am still very interested in this, but I am also cautious.

 

[redo]

Yes, I knew about that. Made a thread about it here.

What puzzles me is the stuff about 24 hours. If you see the graph of how the symptoms improve below. As you can see, the big symptom improvement comes after around 6 weeks.

If there are any improvement after only 24 hours, than I suspect it might be some of the other agents doing something (oral cetirizin 10 mg, dexamethason 8 mg and paracetamol 1 g - plus rituximab 2 mg/ml).

Rituximab could well be described as the chemotherapy which aint chemotherapy. It kills immune cells, but it does so because Rituximab is a antibody binding to the antigen found on the outside of CD20 cells, leading to apoptosis of B-cells. It's really a gentle drug compared to the ones in that class. They use it for moderate to severe arthritis (not that that's all happy days, but it's not lethal).

About the virus being activated in some rare cases, I think Daffodil posted some novel research about how that may be stopped, although it's still avant garde science. It's in the Rituximab thread above.

I think Cort did a brilliant job interviewing the scientists. Just thought I'd add that.

 

[Sasha]

Redo, this isn't stuff from the presentation that is being peer-reviewed and the one why IiME want to hold back their CD so as not to affect publication, is it? If so, I think it would be best to delete these posts so as not to risk the paper's publication!

But I think you may be talking about another study so sorry if I am just confused!

 

[Jemal]

Yes, I knew about that. Made a thread about it here.

Ah, I misunderstood your post then, sorry

Anyway, I am wondering about the 24 hours as well. It seems really quick...
Also I hope you are right about it being a gentle drug. I am still a bit wary.

 

[redo]

Redo, this isn't stuff from the presentation that is being peer-reviewed and the one why IiME want to hold back their CD so as not to affect publication, is it? If so, I think it would be best to delete these posts so as not to risk the paper's publication!

But I think you may be talking about another study so sorry if I am just confused!

No, it isn't. You can calm down :Retro smile:

The graph and other info I wrote is from the study which was published over two years ago. Early summer 2009. It's available for a read here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711959/

What puzzled me was the 24 hour stuff, so I reckoned it had to be another drug which was mentioned (or the "co drugs" given). Because it took months last time, and because it takes months (not hours or days) for the much related condition, MS, to improve from Rituximab (published 2008).

Here's a graph showing lesions in Multiple sclerosis after given Ritximab (from the 2008 study).

Point I am trying to make is that the time frame puzzles me...

 

[redo]

Ah, I misunderstood your post then, sorry

Anyway, I am wondering about the 24 hours as well. It seems really quick...
Also I hope you are right about it being a gentle drug. I am still a bit wary.

No problem. I misunderstand things constantly. I'm having problems navigating in all this fog...

What I meant to say about it being gentle was that "It's really a gentle drug compared to the ones in that [the chemotherapy] class."

 

[Sasha]

No, it isn't. You can calm down :Retro smile:

Thanks! One less thing to worry about!

 

[LaurieM]

DVD set due out next week

According to the IiME facebook group https://www.facebook.com/groups/5804522506/ the DVD set will be released next week (1st week of October I guess).

Iime comment:

Great news. We will begin distributing the conference DVD next week. Thanks for your patience all who have ordered

This implies, and the Iime have also confirmed on the facebook group, that the Norwegian study (which was the cause of delay) will also be published very soon.

I just need to get around to watching last years DVD set now

 

[eric_s]

Great, i just ordered the DVDs some days ago. They're not expensive at all, by the way. 13 or so.