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Bad news: BWG Results are negative!!

WillowJ

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4,940
Location
WA, USA
If it is accurate news and we know for sure one way or the other, it is not necessarily bad news. It was a really good model, but if it can't be substantiated, then we need to spend our energy and money looking in other directions.

All news that gives us sound information is good news. It's disappointing not to have a unifying eitiology and ultimate cause, but many diseases don't have that. And not potentially having an infectious retrovirus (if this is a true report; it's a day early) is a relief.

What we need to hear now is commitment to finding solutions to our disease(s), and I think we have that. WPI is there for us and will always be there. They will find a new direction to study. NIH is funding the Lights' research, bigtime.
 

Joopiter76

Senior Member
Messages
154
and why are people gettign better by taking ARVs ?? Because ther ist NO RV ??
I will wait for the WPI response before make some conclusions.
 

FancyMyBlood

Senior Member
Messages
189
and why are people gettign better by taking ARVs ?? Because ther ist NO RV ??
I will wait for the WPI response before make some conclusions.

The ARV 'trials' are purely anecdotal and the results are mixed. Some people claim to get better from homeopathy.

I really hope the WPI will acknowledge the end of XMRV/ME-CFS so this doesn't turn into a 'Wakefield situation' (not the frauding, but the persistent believe by some patients it's a conspiracy). It's really in the best interest of them and for us patients if other areas will be explored so we can finally find a cure for this awful disease.
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I agree we have to wait for more information before i even dare to try to draw a conclusion. As far as ARVs are concerned, i think it's very hard to say anything without a real drug trial. It might be a placebo effect or the ARVs might work in some other way, by affecting something else in the body.

But if the labs who have previously reported finding XMRV now find it equally often in cases as in controls i would honestly have to say: lousy work. It should not take 2 years, thousands of upset and stressed people and probably millions of dollars to be able to correctly conduct a blinded experiment. I will now be careful and say no more before we know more and i really can't believe people like Frank Ruscetti or Harvey Alter would not be able to make sure they have run a proper blinded test in their own lab before going public with results, but if what was reported here really is the truth, then some people have screwed up miserably, in my view. The best explanation would then be that they did it to create a stir and a lot of attention, but i don't think this is what happened. If it would be plain incompetence it would be quite disappointing. Those people have made major discoveries and recieved prizes :confused:!
 
Messages
13,774
The ARV 'trials' are purely anecdotal and the results are mixed. Some people claim to get better from homeopathy.

There have been a few reports of people getting worse on ARVs... but they stop taking them, and then we get no more reports. If people's conditions fluctuate anyway, then any intervention is likely to end up with more positive anecdotes than negative as those whose condition happens to be improving when they're on it will be more likely to stick with it, and talk about it.

To me, the reports we've been receiving from those experimenting with ARVs have always made them sound like an ineffective intervention - but it is still possible that a minority were being helped by them. Who knows?
 

FancyMyBlood

Senior Member
Messages
189
I agree we have to wait for more information before i even dare to try to draw a conclusion. As far as ARVs are concerned, i think it's very hard to say anything without a real drug trial. It might be a placebo effect or the ARVs might work in some other way, by affecting something else in the body.

But if the labs who have previously reported finding XMRV now find it equally often in cases as in controls i would honestly have to say: lousy work. It should not take 2 years, thousands of upset and stressed people and probably millions of dollars to be able to correctly conduct a blinded experiment. I will now be careful and say no more before we know more and i really can't believe people like Frank Ruscetti or Harvey Alter would not be able to make sure they have run a proper blinded test in their own lab before going public with results, but if what was reported here really is the truth, then some people have screwed up miserably, in my view. The best explanation would then be that they did it to create a stir and a lot of attention, but i don't think this is what happened. If it would be plain incompetence it would be quite disappointing. Those people have made major discoveries and recieved prizes :confused:!

I think a huge amount of money and resources would've been saved if 'they' (NIH/CDC/FDA) just took 100 well-defined ME/CFS patients and 100 healthy controls and send their blood to VIPDX. If it would turn out that XMRV was more detected in the blood of ME/CFS patients, we could go on from there and find out why other labs didn't find it. If it would turn out that there was no difference in detection, it would be a fair conclusion the results of the original Science paper were based on contamination and patient samples were just handled more often.

Anyway, it'll be interesting to see a detailed response from the WPI. These new findings and the partial retraction of the original Science paper are a pretty big blow to them.
 
Messages
73
Location
Belgium
There have been a few reports of people getting worse on ARVs... but they stop taking them, and then we get no more reports. If people's conditions fluctuate anyway, then any intervention is likely to end up with more positive anecdotes than negative as those whose condition happens to be improving when they're on it will be more likely to stick with it, and talk about it.

To me, the reports we've been receiving from those experimenting with ARVs have always made them sound like an ineffective intervention - but it is still possible that a minority were being helped by them. Who knows?

Jay Levy:
Rivka,

There is some evidence that antiretroviral drugs quiet the immune system. So some relief could be expected since many people with CFS show evidence of a chronically stimulated immune system. However these antiretroviral drugs are not free of toxic effects and so one would not recommend them for CFS. We need to find other drugs that can quiet the immune system in a selective and beneficial way

This was the answer to a question why people got better with ARV's.
 

Joopiter76

Senior Member
Messages
154
I think a huge amount of money and resources would've been saved if 'they' (NIH/CDC/FDA) just took 100 well-defined ME/CFS patients and 100 healthy controls and send their blood to VIPDX. If it would turn out that XMRV was more detected in the blood of ME/CFS patients, we could go on from there and find out why other labs didn't find it. If it would turn out that there was no difference in detection, it would be a fair conclusion the results of the original Science paper were based on contamination and patient samples were just handled more often.

Anyway, it'll be interesting to see a detailed response from the WPI. These new findings and the partial retraction of the original Science paper are a pretty big blow to them.


Thats what I mean. And they point is, that I wonder why this way wasnt chosen? This sound illogical to me to take 7 Labs additionally who never proved to detect XMRV in vivo.

What I would have done in my Lab if I had detected XMRV first (ha, ha) was to blind samples and to re-do the testing to confirm my findings myself. I cant believe they didnt do this. If they didnt do so at the WPI this would be irresponsible. But I guess the did. If we are itellegent enough to think so, of curse they are as well.

And thats right, anyway the WPI has pushed research to solve ME/CFS anyway. with or without XMRV.
 

currer

Senior Member
Messages
1,409
This was the answer to a question why people got better with ARV's.

Hi You can have an auto immune state PROVOKED by a retroviral infection.

Its not an either /or

Retroviruses have been suspected in rheumatioid arthritis for example, another disease where there is an auto immune reaction going on.
 

dannybex

Senior Member
Messages
3,555
Location
Seattle
and why are people gettign better by taking ARVs ?? Because ther ist NO RV ??
I will wait for the WPI response before make some conclusions.

Who's getting better with ARV's? And/or what percentage of those trying ARV's are getting better? Serious question.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
im feeling alot better on av's with lymphocyte tests showing improvement. Im starting to lean towards immune deficiency. I think they need to look at why there is immune abnormalities, lerner maybe the one on the money???
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Who's getting better with ARV's? And/or what percentage of those trying ARV's are getting better? Serious question.
Dr. Snyderman seems to have results that show improvement coinciding with ARV use. But that's just one case of course and i don't know how much independent, outside control there is, basically we just have hist reporting.
 

mellster

Marco
Messages
805
Location
San Francisco
I think Alex said it right - the immune system can be activated and hyper but it also needs to be targeted - it could very well be that it reacts strongly to new outside stressors such as recurrent exertion and also certain pathogens, but become negligent/deficient in fighting latent, reactivating old pathogens and it can also show exhaustion due to constant overdrive and have moments where latent infections can start replicating again. I think that an immune-modulation and anti-viral therapy at the same time (drugs or supplements or both) holds the biggest promise at this point. I'd be wary of any immuno-suppressants but maybe use mild anti-inflammatory drugs/supps.
 

Daffodil

Senior Member
Messages
5,873
people are getting better on ARV's because we have a retrovirus. most people have taken azt, which works on all retroviruses. i dont think its that the drugs "quiet" the immune system..quieting the immune system wouldnt make my NK cell function rise from single digits to 60.

i have always gotten the feeling that the azt is the only thing helping me. when i stop it, i start to slowly decline months later.

i do, however, know someone who has improved substantially on viread alone....and i think i have heard of someone improving on raltegravir alone, too. so i don't know what to make of that.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,076
Location
australia (brisbane)
people are getting better on ARV's because we have a retrovirus. most people have taken azt, which works on all retroviruses. i dont think its that the drugs "quiet" the immune system..quieting the immune system wouldnt make my NK cell function rise from single digits to 60.

i have always gotten the feeling that the azt is the only thing helping me. when i stop it, i start to slowly decline months later.
Daff i dont doubt you have a retro. Im just wondering if it depends on what infections someone can pick up when the immune system is down, like avirus or retro which further causes immune deficiency and more co infections. I think we may still need to look at different sub groups depending on infections one has. The old name of chronic ebv maybe true for many and even chronic cmv or hhv6 or even retro for those resistant to av's. The immune condition of nk immunodeficiency also stands true. I hope they keep looking into retroviruses as a theory as it seems to make the most sense to cfs/me
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
It still annoys me that the media is focused only on the CFS angle, when the prostate cancer results are just as likely to be due to contamination.

well said! if it's contamination/not a human pathogen, etc. in the one, it's likely contamination/not a human pathogen, etc. in the other.