What better way to prove causality than holding those clinical trials?

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Hello everybody,

I've been known to oversimplify things, so please correct me if necessary. Like all of you probably, I've been reading a lot of articles and analysis since the appearance of the Alter/Lo paper and a lot of arguments keep being repeated. One of the most read arguments is: It's too early for clinical trials because causality isn't proven yet, but I keep thinking to myself: "With such a high percentage of correlation (87%) and 3 ARV's that have already proven itself in vitro, what better way is there to prove causality than HOLDING those clinical trials? If the ARV's work, we have double succes. It proves (at least partial) causality and it provides us with a cure!

What's keeping them?

The severity of side-effects? My uncle has HIV for years now and is treated with ARV's. I would LOVE to trade with him.

The costs? Are ARV's so expensive that they cost more than millions of people depending on social security?

Again, maybe I'm oversimplifying things now, but shouldn't we be petitioning, screaming, begging, writing and E-mailing for CLINICAL TRIALS NOW?
 
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I strongly agree - I think now - more than ever - is the time for us to galvanise and mobilise around one key message - I agree the message should be
 

Francelle

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I agree with you Wasbeer on so many levels.

There is much speculation that MLV’s (XMRV or HGRv’s whatever retrovirus) in people with M.E./CFS may simply be piggybacking on a diminished immune system……but with figures like 85% + I'd like to know, do we find HHV6, CMV, EBV or any other virus occurring in a similar percentage in this same patient grouping?

Both the other retroviruses found to date cause devastating health issues. Why should this one be any different?
 

Sasha

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I agree with you Wasbeer on so many levels.

There is much speculation that MLV’s (XMRV or HGRv’s whatever retrovirus) in people with M.E./CFS may simply be piggybacking on a diminished immune system……but with figures like 85% + I'd like to know, do we find HHV6, CMV, EBV or any other virus occurring in a similar percentage in this same patient grouping?

Both the other retroviruses found to date cause devastating health issues. Why should this one be any different?
I think I read somewhere on the board that Dr Mikovits had said that they had recently tested a ton of PWC for all these other viruses and none were showing up in more than about 10% of patients. Unless there is still another "Agent X" out there, I'm finding it hard to see how XMRV/MLVs aren't "it".
 
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http://www.pnas.org/content/early/2010/08/16/1007944107

this very thing is called for in the Commentary published in PNAS to accompany the Alter/Lo paper.
It's a very good commentary, and I hope the people who wrote it will put their money where their mouth is. I really don't see any reason why we shouldn't start those trials today. What is interesting about the commentary is that most of it's authors come from France, a country with barely no history in CFS-research, for as much as I know the situation for PWC's in France is very bad. These guys and girls seem to know what they are talking about though, I would love to move to their lovely city Montpellier (great climate!) to participate in their trial.
 
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On a bit more serious note: is there something we could or should do to show the research community that it's in their and our interest to start those trials? There are already a lot of petitions and patient intiatives going on, but neither of them is demanding for clinical trials, as far as I know. The scientists can make progress, Big Pharma can make money, we can maybe get our lives back and I'm pretty sure that if the research community won't lead on this subject, more and more patients will start their own 'rogue' trials, with or without appropriate medical supervision. I know I am not willing to wait much longer for 'the science to puzzle this out' when a possible solution already seems available.
 

Rrrr

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i think we need to all be demonstrating everywhere with signs that say CLINICAL TRIALS NOW. like, how about in front of all the big pharma headquarters?